Phoebe Rose Rocks

This too shall pass ...

2012-03-01T15:41:00.000-08:00

Phoebe continues to have 100% donor cells and she is most definitely kicking this Leukemia's butt. She is still eating, pulling herself up, standing, babbling and saying new words. Her favourite thing right now is to give hugs and kisses to Jon, Mae and I. It really is a beautiful thing and it warms my heart.

The rash, however, is still here. And although it is not any worse, it is not better either. The cream does not appear to be doing its job. Tomorrow, Phoebe will have a skin biopsy to help to determine if this is GVHD. The doctors are going ahead and treating it as such before the biopsy results are available because they are convinced it is and they want to keep it under control. GVHD is essentially the new stem cells attacking Phoebe's body. It can be life threatening and is something that I have seen many children suffer from. Phoebe's liver enzymes continue to be elevated, and this is another area that can be affected. We really don't want it to get any worse and so although the prospect of Phoebe being on more medications that carry with them many side effects scares and worries me, I think the alternative is far worse.

Treatment for GVHD is steroids, and the doctors plan to use as small an amount of these as possible. The steroids will hopefully burn out the GVHD and then Phoebe will also be on immuno-suppression. She will be on this medication for 4-6 months, if all goes well and its job is to prevent any more complicatons. It is, as much of this is, a fine balance. Weighing side effects with treatment, and ensuring that the delicate balance of immuno-suppression is there. Just enough to prevent GVHD but not too much as to affect these new and hard working cells.

There is one good thing about GVHD and that is that statistically, patients who have it have a decreased risk of relapse. I will add this piece of information to my list of all things good and positive about all of this, and think of it when the alternative and worrisome thoughts work their way into my mind.

As for the future and a possible homecoming, it will definitely be delayed. For how long, we are not sure and we
are taking things as they come. Phoebe will not be sent home with active GVHD, so that and all other things transplant related will have to be stable. How long all that will take will depend on Phoebe and how her little body responds to treatment. And really, as long as we are bringing home a healthy and Cancer free Phoebe Rose, it doesn't matter.

Rash, rash go away

2012-02-28T08:06:00.001-08:00

The rash is still here ... and it is driving me crazy. Over the weekend I probably looked at various parts of Phoebe's skin 500 times - wondering if the rash was spreading or changing colour. Our conversations all weekend focused on it. Was it raised? Was it splotchier? Better? Worse? It better go away soon, or I might just lose my mind and cause Jon to lose his too.

Yesterday afternoon when our doctors saw the rash again, for the first time since Friday, they commented that they were "pleased" with what they saw. This brings me a small amount of comfort. The concern right now is in this GVHD getting worse and possibly spreading to the rest of Phoebe's skin, or her liver or gut - the other places it commonly affects. Right now it is somewhat stable, and possibly, even a bit better. If the cream will in fact clear it completely, we should see real improvement over the next few days. If the cream is not effective in clearing it then Phoebe needs oral steroids to in her doctor's words - put out the fire, that is causing the gvhd, and then 4-6 months of immuno-suppression to ensure the fire remains calm. We are really hoping and praying that the cream is effective as the alternative treatment will suppress Phoebe's new and developing immune system and delay a return home.

We are so close to home and to putting our lives back to some kind of normal, that this setback is frustrating. But, it is just a setback and we will eventually make it home. Looking on the bright side, to have this (hopefully) small amount of GVHD is a good thing in the fight against Phoebe's Leukemia. Her new immune system is proving to be very active and the hope is that while it is causing some problems in her body with the GVHD, it is also giving any stubborn and cowardly Leukemia cells a kick to the curb and a big Glasgow kiss. Never to be seen again.

Phoebe's blood work looked good today, apart from mysteriously high liver enzymes that the doctors are trying to figure out, everything is very stable. They have stopped one drug that they think may be the cause. We are taking things one day at a time, applying cream diligently, and hoping for continued improvement.

We are day +89 today - almost in the 90's. Miss Phoebe Rose has come so far that we are not going to let this rash get us down.

Day + 85 and another hurdle ...

2012-02-24T11:01:00.001-08:00

Day + 85 and all is well, or somewhat well. Phoebe's weekly chimerism shows 100% donor cells - great news. This week however, Phoebe developed a bit of a rash. It started on Tuesday evening, on her fingers, slowly spread to her face and today it is also on her feet and back. Never a dull moment around here. The doctors are assuming that it is GVHD ( graft versus host disease) and have ordered a topical and very strong steroid ointment. GVHD occurs when the graft (my stem cells) recognizes the host (Phoebe) as foreign and mounts an attack.

We are hoping to see improvement by Monday. There was some talk about what to do if there is no improvement, but I am hoping we won't have to go that route, as it involves oral steroids, and restarting immuno-suppression. These things will both suppress Phoebe's new and developing immune system and that worries me very much because of the larger beast that we are fighting. We are really hoping to avoid that route but GVHD can be both debilitating and life threatening so we will do whatever it takes. Our doctor did say that this rash is mild GVHD, that it is positive that it has moved slowly and that it took many weeks of being off immuno suppression to develop. He also said that a bit of GVHD is not necessarily a bad thing as it means that Phoebe's new/my immune system is fired up and possibly fighting off any leftover Leukemia cells. We are focusing on that And hoping the ointment successfully clears Phoebe's skin of the rash.

Phoebe will be seen by her doctors again on Monday and until then we will keep applying cream and hoping for the best. We will also be enjoying a weekend away from the hospital and the beautiful and sunny Memphis weather. And Phoebe and Mae, who have been playing up a storm lately and really loving their time together.

Watching and Admiring

2012-02-20T14:57:00.000-08:00

Day +81. Phoebe is still without the tube, eating constantly, and doing very well. She is yet to drink as much as she eats and is happily soothed by a cookie rather than a bottle, but she is still well hydrated and we are following her lead. We are happy, relieved, excited, nervous, and so very hopeful. The plan for now, in the words of one of the fabulous transplant physicians at St. Jude - a doctor who happened to be on service each and every time Phoebe ended up in the ICU, who saw her through many frightening and life threatening episodes - In his words we are "watching and admiring". Watching and admiring as Phoebe beats down these odds and expectations and most importantly, as she beats down this Cancer. There is no waiting and seeing being done here.

Phoebe's blood work looked great today - her electrolytes are perfect, liver enzymes still on their way down, and her platelets, hemoglobin and white blood cells are "normal", or as close to normal as we have ever seen. It is a beautiful thing. And we are full of hope for continued beautiful days.

Home was mentioned today - or at least the logistics of home. In particular, how often Phoebe will need to be seen for blood work and where, and how frequently she will need to return to St. Jude. Because we are international patients here at St. Jude it is complicated, mainly because of the cost of flights. St. Jude will pay for flights to return Phoebe to the hospital for a check up visit every 3 months, but Phoebe will most likely need to be seen more frequently than that. So, we will probably stay in Memphis a little bit longer than we expected, just to make sure it is safe for her to return home. Before going home is considered, Phoebe will need to have her bone marrow tested on day 100 and the results of that will need to be clear, she will also need to have more t-cells than she has now. The t-cell is an imporant white blood cell as it fights against viruses and has also been known to kill cancerous cells. They are slower to engraft than other white cells because of the immuno-suppression that is given post transplant - at last count Phoebe had 190 t-cells and she needs 400.

We are hoping to be on a plane headed to Ottawa in late March or early April. We, or at least 3 of us, will stay in Memphis until Phoebe is safe, healthy and ready to return home. At some point, parts of our lives will need to return to some kind of normal - meaning Jon will have to return to work, Mae to her home in preparation for school in September, and we will need to adjust to life without frequent tests of Phoebe's blood. To life outside of the hospital.

Phoebe has never been to a shopping mall or a grocery store. She has never been to a playgroup, the library, or daycare. Over the past 16 months, there have been no birthday parties or events with other children, no trips to the zoo or amusement parks. Apart from meeting many medical professionals and other very brave children, Phoebe has been somewhat isolated from society since her diagnosis at 9 weeks old. Once we return home we will still need to avoid many things, but slowly and as we get further from transplant, Phoebe will be able to do "normal" things. I can't wait to see the smile on her face when she participates and is able to experience all of these wonderful firsts.

I wanted to share something with all of you ... a friend recently sent me a beautiful song, explaining that it reminded her of Phoebe. I couldn't agree more and because of this fact, I could hardly listen to it without crying. So here it is:

http://soundcloud.com/theoneswho/my-name-is-you-were-alive

Day +77

2012-02-16T11:53:00.000-08:00

Another visit to the hospital, and another good day. Phoebe has gained .2 kilograms - weighing in today at a whopping 8.7 kgs. This means that the tube stays out, which is wonderful as each day seems to bring with it an increase in appetite and interest in food. She is happily embracing foods of all colours now - enjoying brocoli and asparagus very much.

We also saw the eye doctor again today, and thankfully after she looked into Phoebe's eyes, she saw improvement. She said that the papilledema in both eyes is shrinking - her left more than her right, and that the colour of the nerves of both eyes appears better. Good, great, wonderful news. And a giant sigh of relief. The vision exam also showed that Phoebe still sees very well. She will continue to be monitored closely with another exam in 2-3 weeks followed by a repeat lumbar puncture to check for increased pressure, but we are so happy to see some change. Some good and positive change.

Finally, today's chimerism result is 100% donor 2 cells. We are day +77 today, which means we have now officially passed day 76 and are well on our way to 100. Day 76 marks the relapse of Phoebe's first transplant and we are happy to put it and all memories, anxiety, thoughts and feelings of that behind us.

Go Phoebe go.

All good news ...

2012-02-13T15:04:00.000-08:00

All good news ... Phoebe is still tube free, but has yet to gain any weight. She has since discovered cheese though, so it shouldn't be too long. She is also enjoying a plethora of snacks and other food; including sweet potato, carrots, goldfish, and mandarin oranges - add all of this to the cheddar cheese and I think we have a theme. Phoebe likes orange food. We are hoping the tube will remain out, but we also don't want Phoebe to lose anymore weight as she is already quite small, so we are following her lead.

Today we had a visit to the hospital, Phoebe's blood was taken and everything looks very good. She was also given her weekly dose of immunoglobulin - a drug that helps to boost the immune system. This is something that the body produces naturally and Phoebe's level was high today, so she may not need it anymore. Good news. Her liver enzymes are also on their way down, and all of her electrolytes are normal so the food she is eating is working to keep her healthy. We are relieved and hopeful and apart from the ongoing and unresolved issue of Phoebe's eyes, all is very good.

Phoebe's blood is now only being monitored weekly - on Mondays with the chimerism tests, and her doctor mentioned that this is part of getting things ready to send Phoebe home. That and the fact that it has been many weeks before there have been any issues with Phoebe's blood work - her new cells are working hard. The thought of going home sends me into a bit of a panic which he acknowledged, commenting on how it might be more difficult to get me ready for home than it will be Phoebe. We feel very safe here at St. Jude but home will still be a welcome sight.

For now, we will continue to take things as they come. One day at a time. We will keep surrounding Phoebe with as much food as possible in the hopes that she will eat it and put some meat on her little bones. And we will simply enjoy this time.

Oh, and for the first time today, all by herself - Phoebe pulled herself up to a standing position. Go Phoebe go ...

Tube free Phoebe continues ...

2012-02-09T15:52:00.000-08:00

Watching Phoebe eat is quite possibly the most beautiful sight in the world. After 15 months with an ng tube and almost a year without drinking anything by mouth, to see her reach for her cup and drink is so wonderful. There have been moments throughout this journey when I wondered if Phoebe would ever eat or drink by herself again.

She is not yet eating or drinking as much as she needs to be to gain weight and since her tube was pulled she has lost some weight - going from 9.4 kgs to 8.8 but the doctors are hopeful and want to give her a good opportunity to eat on her own and so they are waiting until Monday (unless something crazy happens before then) to decide if the ng tube needs to be put back in.

Up until today, Phoebe would only willingly drink water, or juice mixed with water - and we were adding all kinds of supplements to this mixture because she needs, among many things, more calories and protein. Today in one sitting she happily polished off half an avocado and drank a yogurt and fruit smoothie - lots of fat, protein and healthy calorie goodness, and just like that, things are looking up.

Speaking of looking up and looking forward - today we also heard the most recent chimerism results and they are 100% donor 2 cells - Phoebe Rose is doing wonderfully well and we are allowing ourselves to hope, dream and think about the possiblity of one day being home. Mae asks about Ottawa often, and I know that she would like nothing more than to be there - for all of us to be there.

But, for right now we are simply watching and waiting - Phoebe's blood counts all look good, and except for some elevated liver function tests that the doctors are trying to figure out, all is great. We are going to spend the weekend putting meat on Phoebe's little bones and life without an ng tube will hopefully continue to be a real possibility.

Phoebe snacking and enjoying a live show in honour of St. Jude's 50th birthday.

Tube free Phoebe

2012-02-06T21:48:00.000-08:00

This morning for what was probably the 100th time, Phoebe pulled out her ng tube. This is the tube through which she gets the majority of her nutrition and it is something that she has had since shortly after her diagnosis. We would love to see an end to ng feeds, to the leaky tube that goes in Phoebe's nose, is taped to her face, hangs down her back, and has to be replaced in a way that resembles torture and apparently, so do the doctors. They have decided to give Phoebe a chance without the ng feeds, to see what she will do, and we are hoping that this is a first step toward an end to everything tube related. And it is so wonderful to see her whole face again.

Phoebe will drink from her sippy cup, and she is slowly expanding the number and types of foods that she will eat, but she rarely finishes anything. She loves her goldfish and she will suck on 100 before she will chew and swallow 2. She is a unique one, our Phoebe. So, while we are hopeful that this is the last time Phoebe will pull out her ng tube, we are realistic and aware that this is something that she has had for the majority of her life. As usual, we are going to follow Miss Phoebe's lead.

Phoebe had her blood tested today, and everything looks very good. Her platelets and hemoglobin are coming up on their own, and her white count is holding steady. This week's chimerism results should be available by Thursday and we will anxiously await the results. The doctors are impressed with Phoebe's progress and spent some time today just watching her play and do her thing. She is working very hard with her walking and now I am a bit worried (but very excited) that she might be mobile by the time we head home in a couple of months. Worried because I will be trapped on an airplane with 2 very active and now possibly very mobile toddlers, and so very excited for many other reasons - Phoebe is learning to walk!!!

In other news, Jon the regular blood donor has now given over a gallon of platelets to the kids of St. Jude. He never misses a week in the donor room and to put it in perspective, those giant plastic tubs of icecream or a large can of paint - fill one of those and then some and that is the amount of precious platelets that Jon has given. Go Jon Go.

If all continues to go well, home in the Spring is looking like a very realistic goal. Although it is hard for us to make plans that are more than a week in advance, I have embraced all things hopeful and signed up to run a half marathon on Ottawa's race weekend in support of Candlelighters Childhood Cancer Support Programs. Before Phoebe was diagnosed, I like to think I ran on a regular basis, but as many Cancer mums and dads can probably attest to, life in the hospital with a sick child can be both physically and emotionally exhausting and leaves little out of hospital free time. Now, with the half marathon goal in mind, and a wonderful organization to support, I am enjoying the overwhelming feeling of peace that running brings me. A chance to push Cancer to the farthest corner of my mind.

Candlelighters is a wonderful source of support to families like ours and others throughout Eastern Ontario who find themselves faced with a childhood cancer diagnosis. Their focus among many is to enrich the lives of children with Cancer, to ensure a wonderful quality of life, and to help families by easing financial burdens.

If you can, please help me support Candlelighters and their mission to better the lives of children diagnosed with Cancer, by making a small contribution.

http://www.canadahelps.org/GivingPages/GivingPage.aspx?gpID=16466

A Glasgow Kiss

2012-02-02T20:51:00.000-08:00

This week's chimerism results show 100% donor cells. Go Phoebe go! She is doing very well and is eating more, drinking more, and doing something new everyday. Her latest achievement is to take steps while holding on to furniture - her obsession with goldfish crackers has come in handy for this as we have learned that she will walk for fish.

On Wednesday, four eye doctors had a look at Phoebe's eyes while she was under sedation and today another doctor gave her an eye exam. The good news is that she appears to see very well and she passed her eye exam with flying colours. We, of course, already knew this because Miss Phoebe has an incredible ability to find and pick up very tiny and often clear objects and examine them with wonderful and careful curiousity. Thankfully, she is not a baby that puts things in her mouth.

The not so good news is that there appears to still be few answers to what may be causing or what could have caused the papilledema. One eye doctor commented that this is "unheard of" for someone Phoebe's age. It is just not seen. They were puzzled and they asked a lot of questions about Phoebe's history. One doctor asked why Phoebe was on the blood thinners. Jon explained the original cause was an overdose of platelets that Phoebe received just days after her diagnosis. All of the opthamologists focused on this for the rest of meeting, calling it a traumatic event and suggesting that it could have caused the papilledema as it could have temporarily affected the veins in her brain and skull. They asked what had been done after this "trauma" to ensure that no damage, other than the very obvious clot, had occured. And our answer was simply, nothing. Nothing had been done.

And so, once again, I am hurt and heartbroken. Talking about this incident has brought up memories that I have been suppressing for a long time. Memories and images of Phoebe, days after her diagnosis in the ICU, her leg purple and swollen to 10 times its normal size, unable to move, screaming in pain. And the doctors telling us - well, at least she won't need platelets for a while. For the first time since it happened, it was described accurately - a trauma. Phoebe's body, a tiny body that was already fighting for life, had experienced a traumatic event.

We have no photographs of the first week of Phoebe's diagnosis because we were in too much shock and disbelief, both with all that we were processing in terms of her disease, and all that we were seeing in regards to this incident.

Phoebe still receives injections of blood thinners because she is now at a high risk for clotting, but I could never have imagined that 15 months later we would be dealing with more possible complications. It breaks my heart to know that Phoebe's already incredibly difficult road was made harder by a very unnecessary and careless mistake.

The opthamologists and neurologists are going to watch Phoebe, and monitor her eyesight with regular exams. And in the meantime, we are going to be hoping for answers and solutions to this frightening problem. Phoebe, as we know, is different. She is a child that will always have to be closely watched. This is our life. Our new normal. And we will manage because Phoebe will guide us.

And so onwards and upwards we go and today instead of past mistakes I choose to focus on 100% - on those powerful cells that are doing magical things inside Phoebe's body. At this exact moment I am imagining them physically kicking Leukemia to the curb, giving any bad cells a Glasgow Kiss (think aggressive head butt), and generally triumphing over this Cancer that has plagued us for so long. Too long. Those cells are allowing her a chance at a healthy and cancer free life. A life spent in parks and playgrounds rather than hospitals, because seriously - I think we have had our fair share of hospitals for one lifetime.

Positive steps ...

2012-01-30T21:02:00.000-08:00

Today Phoebe had another visit to the hospital. Her blood was checked and everything looks good, her platelets are slowly climbing and her other counts are holding steady. Her white cell count jumps around a bit and was low today - still in normal range, but anything white cell count related is stressful. The doctors remain comfortable not doing a bone marrow test right now and will wait until day 100 or earlier if there is a reason to. They are happy with Phoebe's progress and that is what we are focusing on. Positive steps forward.

Phoebe's drug count has shrunk and this makes me very happy. Now instead of 8 drugs twice a day, she gets 3. The 3 that are left over are protecting her against viruses, fungal infections, and she still has the twice daily injections. The protection against viruses and fungus is necessary until Phoebe has a normal amount of T-cells - they are the last type of white cell to come in because the immuno-suppression works against them. Now that we are without that drug these wonderful virus and cancer fighting cells will have free reign. Free reign to kick Leukemia to the curb.

The puzzle with Phoebe's eyes remains just that, but it is not for lack of trying on the part of many doctors. The opthamologist that has been seeing Phoebe has called in some troops - asked for help and advice from her collegues and on Wednesday 3 eye doctors are going to have a look. For them to get a clear picture and run all of the tests they need to, it will require Phoebe to be sedated ... again. Hopefully her friend George will be there.

I appreciate all of the effort that is going in to solving this problem, no one is giving up and the opthamologist that I spoke with today is determined. Not only to solve the problem, but to save Phoebe's vision. The fact that Phoebe's vision could possibly be at risk scares and worries me, but not nearly as much as many, many other things we have been and are faced with everyday. Since Phoebe's battle with Leukemia began, we have lost many brave friends. Wonderful, vibrant, incredibly courageous children are dying in the dawn of their lives. When I hear of another life lost I want to scream and shout and tell as many people that will listen that we need help. That there aren't enough funds dedicated to children's cancer research. That many children's cancers carry a very poor prognosis, including Phoebe's. That too many children are suffering with or dying from this disease.

We have seen incredible advances made towards a cure over the past 15 months and we know that research helps and that many people are working very hard, but sadly with the exception of St. Jude, the Children's Oncology Group and a few others, very few large Cancer related organizations dedicate much to Children's Cancer research. Some shockingly give less than a penny raised. Why is that? One oncologist told us that it is simply because there is no money to be made. The drug companies making these life saving drugs simply don't make a profit by developing drugs for children Many are sick and dying, but not enough to make a profit. That's something, isn't it?

To the right of of this page is a list of many wonderful organizations who are working very hard to advance the cure for Children's cancers. Our situation reminds us everyday, not just of the overwhelming need for more research and funds directed specifically to childhood cancer research, but also of the incredible people who despite all that they are up against work tirelessly to help children like Phoebe. Although our journey has been long and not free from bumps, we feel very lucky to have benefitted so much from this hard work and determination.

To all of the sweet and courageous warriors who are fighting, to the brave souls who have lost their battle, and to the many parents who are hearing those dreaded 4 words, your child has Cancer, for the first time today - I salute you, my heart aches for you, and I admire you.

George!!

2012-01-27T16:07:00.000-08:00

Phoebe is drinking from a cup. I mean, really drinking from a cup. She asks for her cup, sips from her cup, drinks and swallows whatever is in her cup, and she does it all by herself. Up until the meeting of this major milestone, Jon or I would have to hold the cup up to Phoebe's lips to entice her to drink. We would let drops of milk or water fall into her mouth and sometimes she would taste and swallow and other times, most of the time - she would let the liquid drip out of her mouth and down her chin. This new skill makes me very happy. So very, very happy as it means that there may be an end to the ng tube feedings that have been Phoebe's main source of nutrition for the past year. She will have to drink enough by mouth to do this but it is one more big step forward and that is a wonderful thing.

We had a visit with a new neurologist yesterday. Phoebe liked him very much and even allowed him to hold her - which is nothing short of a miracle as she really doesn't trust strangers. He didn't have many answers as to the cause of the swelling on Phoebe's optic discs, but is going to be following Phoebe closely, running some more tests, and he wants her to have regular and consistent eye exams and lumbar punctures to make sure her vision stays as strong as it is and that there is no longer any more increased pressure. She also may be seeing an eye specialist to make sure that they are not missing something. Many doctors are now involved and working hard to help Phoebe, but once again, we are left to wait and see and hope that this does not cause any further or long term problems.

The neurologist also commented on Phoebe's developement and how she is slow to learn some skills. He said that there is evidence on her MRI of some damage to the nerves of the brain - something that everyone else has commented on as "normal for someone who has gone through what she has". He explained that we will not know how all of this has affected her until she is older - she may not be as cognitively alert as she would have been were it not for the copious amounts of chemotherapy that ran through her veins. We will never know. And frankly, after I put all of the guilt that I feel over my own baby having to endure what she has aside, I realized that it doesn't matter. I will never look at Phoebe and wonder what she could have been - she has already proven herself spectacular and brilliant and I truly believe that her future is bright. She can be whatever she wants to be and i'm sure she will do it with style and grace and in her own unique way. I am just so relieved and happy that she has a chance to be.

But for now, she doesn't say many words, she is not yet walking and she is not eating like a "normal" 18 month old - but look at all she can do. Phoebe can attach a syringe to the tiny lumen of her central line after pretending to clean it like the nurses and Jon and I do. We don't allow her to touch her own line but she has "practice" ones that the nurses gave to her. She can put the clear sheath on the end of the thermometre tip - a task that is difficult for Mae to do. She has figured out how to open the end of her ng tube and often puts pretend syringes in there too - mimicking how Jon and I give her medications. One of her favourite things to do is to screw a top on and off a bottle of sterile water or to put the stethescope up to her chest and "listen". All of this to say that her environment, her experience, has allowed her to develop differently - perhaps more slowly than others in some ways, but all things considered she is not slow, only different. And she is fierce - there is no stopping our Phoebe.

In other news, Phoebe had another central venous line inserted today, this will be line # 8 and this time it is a single lumen hickman. Meaning only one tube is hanging from her chest. To put in perspective Phoebe's unique situation, sense of humour and the unfortunate fact that she is a regular in the operating room - when she saw the anesthesiologist appproaching she looked up, waved, and said "George!". And yes, his name is George. With this line in, Phoebe avoids pokes for blood work and her weekly IVIG and it just makes things easier and less traumatic for her which is a good thing. When she is further out from transplant, needing less frequent blood draws, no IVIG, and all is going well, the line can be pulled. That will be a glorious day as it will mean a future of bubble baths, swimming pools, and playing without worry of getting too dirty or pulling on the line.

Onwards and upwards ... day + 57.

Splish Splash

2012-01-25T19:16:00.000-08:00

Tonight, for the first time in her life - Phoebe took a real bath in the tub. Because of her very young age at diagnosis and the various central lines that she has had since then, she has never really taken a bath. Or at least a real bath, with bubbles and toys, and the chance to splash and play. So tonight, she sat up, surrounded by bubbles and toys and played and laughed with Mae. While I was running the bath she stood up next to it and lifted her leg, trying to climb in by herself. Needless to say, she loved it.

Tomorrow we have another visit to the hospital, this time to see another neurologist. We are hoping that the addition of this doctor will help to solve the problem of Phoebe's eyes and the swelling on her optic discs, so that we can put all of the worry and questions associated with this behind us once and for all.

In the meantime, Phoebe continues to do very well. She is starting to act very much like a "normal" toddler, and like her big sister, rarely sits still. Tonight she had rice, beans, her usual avocado, and sweet potato for supper and she has added cucumber, raisins, and apple to the list of foods that she will very willingly try. Still tiny bites but she makes wonderful progress everyday.

And ... this week's chimerism is 100% donor cells. Go Phoebe go ...

Tub baths on the horizon ...

2012-01-23T15:51:00.000-08:00

Our weekend away from the hospital was wonderful. Phoebe is doing so well. She has been standing and babbling, and catching up on all that she has missed. Last night we made pizza for dinner, and Phoebe pointed excitedly at the pizza and said "za za" over and over again until it was cool enough for her to sample a piece. She is still eating only tiny amounts but the effort is there. She is trying very hard and is in love with snack food. She is borderline addicted to goldfish crackers and we are working to expand her culinary repertoire.

We were back at the hospital bright and early this morning. Phoebe had her lumbar puncture, a visit from her doctor, an infusion of IVIG (an immunoglobulin that she receives weekly to boost her immune system), and she also had her central line pulled. The lumbar puncture shows slightly elevated intra-cranial pressure. The next step is to once again involve neurology in the hopes of solving this puzzle and preventing any further or possible damage to Phoebe's vision. Phoebe's transplant doctor is still very happy with her progress and because her counts have been steady and her chimerisms have consistently been 100%, he doesn't see any need to do a bone marrow aspiration on day +60. This was mentioned as something that is done often for high risk patients like Phoebe when there is cause for concern, and so it is wonderful news to hear that she is doing so well and impressing her doctors. The next bone marrow aspiration, if all goes well, will be done on or around day 100 and in the meantime the weekly chimerism of Phoebe's blood will still be monitored.

Phoebe's doctor decided that the risk of the bacterial infection returning with her line still in is too high, and opted to pull it out. And so, just like that while Phoebe was awake and in her crib a nurse practicioner pulled, or actually yanked it out of Phoebe's chest. That, i'm sure was a lovely sight to see and I am thankful that it was Jon and not I that got the pleasure of witnessing it. I heard that Phoebe was a trouper and seemed more shocked than hurt as it came out. That's our girl.

Now, for the first time in many, many months - 15 to be exact, Phoebe does not have tubes hanging from her chest. In 2 days she can actually take a real tub bath if she wants to - a real tub bath is something that many children going through cancer treatment are not able to do because of their central lines. It is something that should never, ever be taken for granted. Unfortunately, Phoebe's time without tubes is limited as another central venous line will be inserted on Friday. The doctors feel that it is too soon to go without regular and reliable access to Phoebe's veins, for blood work, her weekly IVIG, and other miscellaneous tests and so line number eight it is. Hopefully this will be her last.

In other Phoebe news, she is almost completely weaned from her immuno-suppressant. This drug comes with a particularly long list of side effects and we are happy to see it go for many reasons. Without it, Phoebe's new immune system has free will to develop into a healthy disease fighting machine. It is a fully functioning and cancer fighting immune system that will hopefully put an end, once and for all, to all things Leukemia.

And so despite the fact that the doctors are still looking for solutions to Phoebe's eye issue, today has been a wonderful day. It has been full of hope and promise for a beautiful cancer free future. It is day +
53, we are allowing our minds to wander and imagine the tub baths and other wonderful things that are on the horizon, and we're doing it. Go Phoebe go ...

Snacking sisters.

Hanging out at the St. Jude coffee shop and eating with a spoon today.

Breaking Ground

2012-01-19T20:54:00.000-08:00

We had a visit with Phoebe's doctor today. She is doing well, her blood work looks great and he commented happily on how wonderful she looks. She, of course was smiling, laughing, playing and doing her thing. She also appears to have a soft spot for her transplant doctor, and for good reason - she is wise and he is working hard to save her life.

Phoebe is now a whopping 9kgs, she is eating, growing, developing, and everything is moving forward which is so great. There has, however, been a giant elephant in every room that we have been in for a little while now. Something that we have avoided asking or talking about, and depending on which one of us you talk to - we don't want to know. I am referring to odds, statistics, and Phoebe's chance of relapse. Before her first transplant we were told that she had a 30% chance of success, 70% of relapse. This time around, the odds are the same. I am not sure how I feel about this. On one hand, although it may seem odd - to hear 30% makes me feel wonderful and full of hope - 30% is a heck of a lot more than zero, and after such an early relapse and all of the other odds and obstacles that have continually been stacked against Phoebe, I would have expected lower. I will take 30 and treat it like it is the 100 % that it will most definitely be.

Our doctor also explained that Phoebe is part of a five year study, targetted at improving survival rates for children like her who are going through a second transplant - the hope is that the transplant that Phoebe received will prove after 5 years, to be more successful, to improve the odds, but right now there is not enough data to support this and so we have 30%. We are lucky. Phoebe is receiving cutting edge and ground breaking treatment and we may be sitting on the edge of something very wonderful. Who knows what will be discovered. I know that in five years, when my baby is in grade one, I will look back and marvel at all that she has done and continue to thank the folks at St. Jude for their unwavering hope, determination and fight towards a cure.

But still, despite all of this, there is fear present everywhere and all the time. Sometimes it is so overwhelming that it is best to not go there - to focus instead on the wonderful chance that Phoebe has been given rather than the possibility of its failure. Afterall, Phoebe has proven time and time again that she is better and bigger than this cancer and the odds that have been stacked up against her. She is mighty, strong and she is winning this fight. Our doctor mentioned that to be in a good remission, like Phoebe was before transplant, with no evidence of disease is a very good thing. Nothing short of a miracle that should be celebrated.

We have the entire weekend free from hospital visits before Phoebe's lumbar puncture on Monday. The sun is expected to shine here in Memphis and I think we will make the most of this time together, and focus on all that we have and the many, many things that we have to look forward to.

“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.” Lance Armstrong

Day +48

2012-01-18T20:19:00.000-08:00

All is well here in Memphis. Phoebe appears to get stronger everyday. She is eating more, trying new foods, and enjoying playing with Mae. She is more active and although she doesn't pull up by herself yet, she will stand and play and her legs are definitely getting stronger.

We had a follow up eye clinic visit yesterday and the opthamologist noticed the same swellling on Phoebe's optic discs. There has been no change, be it better or worse despite the short course of medication she received. Her medication was interupted by her stay in the ICU and had to be put on hold because of the many complications it creates with Phoebe's electrolytes. The plan right now is to repeat a lumbar puncture on Monday to check for increased intracranial pressure which can cause this swelling. The last lumbar puncture showed normal pressure so right now all of this is a bit of a mystery. There seems to be some disagreement among the doctors also - the BMT doctors are not overly concerned and think it is related to the increased pressure that Phoebe had while she was at Sick Kids, that perhaps it is taking time to heal. They and the neurosurgeon both think that it is related to this and that it will improve once Phoebe is further off treatment. The opthamologist is concerned but really has no answers or solutions at this point. It is a bit frustrating, and needs to be solved and treated to protect Phoebe's vision. Phoebe appears to have incredible vision, and although the eye doctors say that it is difficult to measure sight in an infant, it is obvious to us that she sees well and she appears to have no symptoms of increased pressure. I would like to see the end of this tunnel and when we get there, I hope the BMT doctors are right.

Everything else is going well. Phoebe's blood work looks great, and she hasn't needed anymore transfusions. She is still on antibiotics for the infection but the hope is to complete the course in another week, and we are still holding our breath as to whether her line will need to be pulled. That will depend on what happens after the antibiotics are stopped. Let's hope the nasty bacteria stays away.

So for now, we are enjoying our time together, celebrating less frequent visits to the hospital, and making plans to try and entice Phoebe to eat enough to warrant removal of the feeding tube. We are hoping and praying for answers and solutions in regards to Phoebe's eyes. And we are putting one foot in front of the other and slowly but surely moving closer to home. Day +48 today - almost halfway to day 100.

The Rock

2012-01-14T16:43:00.000-08:00

Jon is a stone mason by trade, an artist really. He shapes, carves, cuts, and forms stones to make beautiful and wonderful things. Fireplaces, patios, kitchens are among his creations that are displayed in homes in Ontario and Quebec. Before any of this happened he was often called "the rock" by friends and family, alluding to his occupation but also his unyielding strength, loyalty, and determination. Today this nickname is even more appropriate. Jon is most definitely a rock.

Like many dads, Jon worked often when Mae was a baby, he rocked her and soothed her, but it was always after work and on the weekends. If she woke in the middle of the night, I soothed her, if she was hungry I fed her - I was the go to parent and Jon was the provider. Well, we both "provided", just in very different ways. When Phoebe was diagnosed our routine and our priorites greatly shifted. We desperately wanted to do whatever we could to save our Phoebe. We put our lives on hold. Phoebe was given a 10% chance of survival and we wanted to spend as much time with her and Mae as possible - we worried about the future, how much time we had together and we wanted to make the most of it. We stopped working and started loving, cuddling, soothing, parenting. 24 hours a day, every day.

While Phoebe was in patient at CHEO, for the first 6 months of treatment, it was Jon that spent the majority of the nights sleeping on the chair-bed. I was expressing breast milk that would be given to Phoebe through her ng tube and needed sleep, time and a private and clean place to do this. Life in the hospital doesn't allow for very much privacy or free time. So, Jon did the night shift and I - the chatty and constantly questioning parent did the day shift. Night after night Jon soothed, comforted, rocked, settled, sang to, and loved Phoebe. During the day he hung out with Mae, brought her to playgroups and parks or spent even more time at the hospital. He has often said that this situation has allowed him a closeness to his daughters that he would never have had otherwise. Among many other things, he learned to comfort and sooth a baby on steroids, and I challenge you to find a baby who is fussier, angrier and more difficult to settle than one who is on steroids. Babies and steroids just don't mix but steroids are a very effective drug at killing Leukemia. Jon did it, night after night and he rarely complained.

During his time with Phoebe he learned to draw with unbelievable skill, he read and read over 10,000 pages of history, and he made many things better. He donates platelets once a week, and has become something of a donor superstar in his ability to continually pump out 2 units of platelets every week. Over the past 14 months, he has also become something of a nutritionist's assistant, he knows how many calories Phoebe needs as she grows and how to get them in to her so that she will grow, he has fixed cribs, made various hanging apparatuses for pumps and other medical equipment that has prompted nurses to call him "MacGyvor" and to ask if he has an engineering background. He made Phoebe her very own personal home theatre in her crib with a small dvd player and some bungie cord, we kept track of where her injection was given by a simple stick-person drawing that he drew on the whiteboard (ingenious yet so simple!), he knows how to insert an NG tube, and regularly takes photos and videos for the doctors so that they are able to see what they might have missed. He is often the first person to notice when something isn't quite right with Phoebe and has a gentle but no nonsense approach when things aren't going as planned.

Today Jon, Mae and I are all in Memphis and lately I have referred often to Jon as the "unsung hero". Looking after children is something that I have always done. I stayed home with Mae and Phoebe and was with them 24 hours a day. When Phoebe was diagnosed, not only did our world turn upside down, but Jon went from full time work to full time dad. He has done this with so much grace, strength and pride that as I write this and think back I have tears in my eyes.

There are many, many things that I wish had been different - above all I wish Phoebe could have had an easier start to life, but about the closeness that my family has developed over the past year - I would change nothing. We have learned to live comfortably and happily in a very small 2 bedroom apartment in Memphis - a roof over our heads, love in our hearts, and hope. Hope is what fuels us. Don't get me wrong, our days are not always sweet and wonderful. Going through a Cancer diagnosis, treatment and 2 bone marrow transplants with an infant and keeping a family together is not easy. We disagree and have trouble managing life sometimes, but at the end of the day we are grateful. Grateful for another day together, another day that Phoebe has survived and a day without Cancer. We make it work and takes things as they come.

And now about Miss Phoebe - she continues to do well. She needed another transfusion of platelets yesterday which the doctors think is due to the infection, but her other blood work continues to look good. Her hair is starting to grow again - very slowly and blond but it is there and she is still working hard at her eating. She is a rock star, just like her daddy.

Freedom

2012-01-12T16:16:00.000-08:00

Phoebe made it back to the transplant unit, and has been steadily improving. She is now getting 20mls per hour of formula with no problems other than the fact that she is very hungry. We have been feeding her by mouth and she has shown a lot of interest in her cup, various snacks and whatever we have on the spoon. All wonderful signs that she is feeling better.

Plans are being made as I write this to send Phoebe home to the Target House today. They have identified the specific type of bacteria and are adjusting the antibiotics once again to make sure that it is well treated. She will be going home on at least 2 antibiotics in addition to her many other drugs. It is a particularly stubborn bacteria so Phoebe may need to have her line pulled but right now all of her blood cultures have come back negative so there is no plan to do that and we are taking each day as it comes.

Phoebe is doing very well. Her last chimerism was 100% and the doctors have started the slow wean of her immuno-suppressant, Tacrolimus. This usually takes about 4 weeks and doing it earlier than planned, we were told, will help with treatment of the Leukemia - in case there are any unwanted cells hanging around, having a well functioning immune system will help to fight them. I was worried when they told us that they were starting the wean earlier, wondering if there was something that caused them to worry, but once again I was reassured that everything is going well. Her immune system is steadily improving and she is almost to the point where she will no longer have to wear a mask when she visits the hospital. She will still need to be somewhat isolated from the outside world, but we are moving forward and each day that passes is one more day in which we have triumphed over all things cancer.

For now, we are hopeful that this will be our last hospital stay, the last time that we are separated by the fish bowl, and we are focusing on helping Phoebe to catch up on all that she has missed. We are working with her physical and speech therapists to improve eating and gross motor development. She is doing well and we are looking forward to all of the wonderful and "normal" things that are in store for her in the future.

Better days

2012-01-10T12:57:00.000-08:00

Phoebe is on the mend. Still in the ICU but hopefully moving to the transplant ward today. The first day in the ICU saw many worried looking doctors, coming in to check on Phoebe frequently and looking fearful for what could have been. The second day saw the same doctors only this time they came in with looks of relief and amazement as to how quickly Phoebe had turned things around. Sepsis can cause, among other things, organ failure and in a person like Phoebe who not only has a new immune system but is also on immune suppression, it can be very serious and sometimes fatal. Thankfully it responded to treatment quickly and before it could cause further problems. It was a very difficult and trying couple of days and we are thankful that we appear to be on a smoother path - once again.

There is an element of fear in each of our days. Fear of Leukemia and relapse, of the unknown, and now of crazy and aggressive bacteria. Yesterday in response to this crazy and aggressive bacteria, Phoebe's white blood cell count climbed to 25,000. Seeing that number on the print out of her blood work caused me incredible anxiety, fear, and panic. Phoebe has never had an immune system to mount any kind of response in the past, so we were somewhat unfamiliar with seeing how a "normal" bone marrow functions. A normal bone marrow pumps out more infection fighting white blood cells to respond to and kill the infection causing bacteria., and this is just what Phoebe's did. Amazing that it has the capability to mount such a response, and reassuring that it is not Leukemia. Reassuring is too small a word to describe the immense sigh of relief that I let out when the doctors told me that this rise in white cells was not cancer related and I look forward to the day when my mind doesn't irrationally jump to all things cancer.

Today the doctors are planning to move Phoebe back to the transplant unit, and we have started to feed her again. Very slowly because her gut took some abuse and temporarily shut down with the infection. She is getting 5mls every hour, which is just enough to keep her gut working but not nearly enough to sustain her. In total she will receive just 120 mls of formula today. 4 ounces. She seems hungry and we would like to give her more but the doctors are worried and cautious and we trust their decision. Before this happened Phoebe had made a lot of progress with her eating and weight gain and we were even imagining a future without the feeding tube. We seem to be starting over but are hopeful that she will quickly recover and begin to love her snacks again.

For now we look forward to moving to the transplant unit, to hopefully allowing Phoebe to eat more, and to bringing her back home. This situation has shown us just how fragile Phoebe is, and how quickly things can deteriorate and change direction. There are no words to describe the relief we feel over how she has recovered and we are grateful for the care that she received in the ICU and the love she was sent from all of you.

Here's to better days ..

The Rollercoaster continues ...

2012-01-08T14:41:00.000-08:00

And the rollercoaster continues ... Yesterday was a good day - Phoebe appeared to be doing well, smiling, laughing and clapping along to her favourite episode of Blue's Clues. Then, early this morning, she started vomiting and she spiked a fever. Jon brought her in to the hospital, blood cultures, stool and urine samples were taken and during this time Phoebe's heart rate started to climb, reaching 230 beats per minute and her blood pressure dropped. She was quickly transferred to the ICU.

She has now had x-rays and a CT scan to look to see if her bowels are twisted and/or obstructed and surgery has been in to see her. Many problems that occur in the bowels, it would seem, have to be surgically fixed. Thankfully, she doesn't appear to have any of those problems, but they are monitoring her with blood work every six hours and more x rays and ultrasounds. Her blood thinners are on hold in the event that she may need emergency surgery. The blood cultures that were taken early this morning quickly grew a gram negative bacteria, one that is considerred to be quite ferocious and so antibiotics have been adjusted to treat it. The bacterial infection originated in her bowels, spread to one lumen of her central line and then also to her peripheral blood. The line may have to be removed, and if it is removed, because we are so soon post transplant, she will most likely need another one. That will be line number 8. I think. I have lost count. The low blood pressure she has been experiencing is a symptom of sepsis - this is where the bacteria enters and poisons the bloodstream causing many, many life threatening complications that I just don't want to think about right now.

The plan is to continue with antibiotics, bowel rest, and fluid. The fluid will help to keep her blood pressure up, the antibiotics will hopefully kill the bacteria and the bowel rest will allow her to heal and to prevent any further damage that may require surgical intervention. Right now she is also resting her body, connected to the monitor for her heart rate, oxygen saturation levels, and constant blood pressures are being taken. She also has a tube in what was her free nostril to pull fluid from her belly and bowels. They are monitoring her very closely, her blood pressures and heart rate have been stable for most of the day and she is where she needs to be to get better, but I can't help feeling intense fear and panic over how quickly all of this happened and the fact that once again, Phoebe is in a very precarious and fragile place.

While the doctors do their thing to help Phoebe to get better, our part of the plan is to surround her with as much love, positive energy, hope and prayers as possible and to support her as she fights her way through another obstacle on her road to recovery. Please help us to do this and send some love Miss Phoebe's way.

Kicking Leukemia to the Curb

2012-01-05T17:29:00.000-08:00

Today we met a fellow Canadian. Unfortunately, he is a neurosurgeon. Phoebe had another eye exam this morning (by an opthamologist, not the Canadian neurosurgeon), and this doctor noticed the same papilledema (swelling) that was behind Phoebe's optic nerves on the last exam. She recommended Phoebe see neurosurgery to rule out anything major. The neurosurgeon commented that because Phoebe's intracranial pressure was normal at the last exam (they do a lumbar puncture to check this pressure), and her MRI appears to be normal, he didn't see reason for any of his interventions. He did think, however, that if the swelling persists, in order to protect Phoebe`s eyesight, a surgical procedure that makes an opening in the sheath around the optic nerve to allow the extra fluid to drain out would be recommended. It sounds invasive, dangerous, and intense and I am hoping that it is not necessary.

During our visit with this fellow Canadian, Phoebe was all smiles, waves and shouts of "Hiaaaaaaaaaaaa" - her way of saying hello these days. She appears to really like to meet new doctors, and frankly, I have had enough. No more doctors. Especially neurologists and neurosurgeons. I would like this mysterious problem to simply go away. Sometimes I wonder though if all of this, these many months of chemotherapy, 2 bone marrow transplants, and Leukemia - if this is just the beginning of the life affecting side effects that we are to come to expect. Each drug that Phoebe has been on has pages of side effects, some life threatening, many life altering, and others very mild. They range from rashes and high blood pressure to sterility and include everything in between. In regards to side effects, I have always thought that we will deal with them when and if they come; I guess I wasn't expecting them to come so soon. Papilledema, if left untreated can cause significant vision loss. Add that to the list of possibly long term side effects and it is completely and incredibly overwhelming. Is it too much to ask to make it through all of this completely unscathed?

On the bright side, and there is always a bright side - Phoebe continues to do and look very well. Today we met with her transplant physician, who she was also very happy to see. She smiled and laughed through the visit and he commented on how well he thinks Phoebe is doing. Everything transplant related, he said, is going perfectly. Her counts are great, her graft is strong, and her chimerism is perfect. Oh, and there is no evidence at all of any disease. Anywhere. He said that the job now is to make sure that everything continues to go well, but he is hopeful and very optimistic. He used the term "success" when discussing the future and Phoebe's transplant. A hopeful and optimistic doctor, we have learned, is truly a wonderful thing.

In other positive and encouraging Phoebe news, she is eating more and more each day. She is still not taking nearly enough to warrant removal of the NG tube. The tube that has pretty much become a part of her body for the past 14 months, but we are definitley making progress. Jon and Phoebe make quite the team at mealtimes - he has always had an amazing ability to get her to eat. She will always open her mouth for the spoon or the cup when he is holding it and considering all that she has been through and the many reasons she has not to eat, it is nothing short of a miracle and Jon, the miracle worker. In the past when all of this began and Phoebe refused to drink from her bottle, in frustration I left it up to Jon and asked him to "get her to drink". Within hours, even if it was just a couple ounces, the miracle worker would make it happen. We have learned through trial and error of late that Phoebe likes icecream, will drink milk from her cup, and very much enjoys picking up and eating very small food. Her time spent in the hospital has blessed her with incredible dexterity and pretty amazing fine motor skills. Yesterday she was stacking and successfully making a tower with her tiny corn and peas.

And so despite the ups and downs of hospital and post transplant life. The possiblity of some very overwhelming side effects and visits from many, many doctors - we are moving forward. One step at a time, one day at a time - we are doing it. Kicking Leukemia to the curb.

Happy New Year

2012-01-03T15:44:00.000-08:00

In the world of bone marrow transplants, we have hit another important milestone. We are now able to visit the hospital every second or third day for blood work and a check up, rather than the daily visits we have gotten used to. Phoebe is doing well. Today, her blood work looked good. Her bone marrow is producing many cells, including platelets, healthy white blood cells and red blood cells. Her white count is 9 today, which because of what brought us here to St. Jude and all that we have been through, caused me to worry. It is completely within normal range but when you are used to zero white blood cells, 9 can seem odd. Thankfully, after talking with Phoebe's doctors, I was reassured that all of those cells are good ones. No sign of Leukemia.

We finally received most of the long awaited bone marrow results. The chimerism shows that Phoebe's bone marrow is making 100% donor 2 cells. This means that right now, all of the many blood cells that are being produced in Phoebe's bone marrow are donor 2 cells. My cells. There is no sign of any of Phoebe's cells, or the first donor's cells. And this, is simply fantastic news. The results of the cytogenetics and MLL (multi lineage Leukemia) gene testing are all negative for any signs of this gene or Leukemia. The MLL gene is often found in infant Leukemia and is one of the factors that makes treatment difficult and complicated and associates the disease with a poor prognosis. To never hear the words, multi-lineage and Leukemia again would make me very happy. The final result that we are waiting for is the minimal residual disease test, which looks more deeply for Leukemia cells. It can find as few as one cancer cell in a million healthy cells and is an important way of determining how successful treatment has been. Phoebe has never had this test done before and we are anxious for the results.

In other Phoebe news; she is going strong. Crawling, standing, babbling, clapping, pointing, blowing kisses, and doing some talking and eating. All of her tricks that disapeared soon after transplant are back and now we have nothing but growth to look forward to. In some ways it is hard to imagine a life without chemotherapy, the hospital, and all things Leukemia related. It has run our lives for the past year and a half but as each day passes, we move a bit further away from the fear that surrounds all things Cancer. We are hopeful that one day, Cancer will no longer be at the forefront of our minds, that we will look back and say - "remember that time we lived in Memphis?", and then we will look at Phoebe and think of how amazingly far she has come. One sweet day.

Right now we have much of the same to look forward to. Phoebe will be monitored closely in Memphis for at least 100 days post transplant. We are currently on day +33. She will need to be somewhat isolated from people, crowds, and public places; only visiting the Target House and the hospital for the next 100 days at least. Her immune system is recovering and because she hasn't been able to develop immunity to anything, or receive any vaccinations, she is succeptable to many viruses as well as bacteria and germs. We feel very lucky and blessed to be able to spend these 100 or more days in Memphis, together as a family. 2012 is off to a wonderful start.

A year in pictures ...

2011-12-30T15:53:00.000-08:00

Phoebe's latest chimerism test shows 100% donor 2 cells. Wonderful news to bring into the new year. In addition to this, Phoebe had a bone marrow aspiration done on Wednesday and the preliminary results show no sign of Leukemia cells. This bone marrow sample will be sent for cytogenetics testing to look for the MLL (multi-lineage Leukemia) gene as well as minimal residual disease (MRD) testing to look deeper than what can be seen under a microscope for Leukemia cells. The chimerism of the bone marow sample will also be tested. The results of all of those tests should be in next week, but we are very happy with the initial news.

Phoebe has also put on a tiny bit of weight. She had been steadily losing weight since she was discharged from the hospital so this is good news and reason for another sigh of relief. She is now on a higher calorie formula with a bit of extra fibre, and we have started her on an appetite stimulant with the hopes that it will entice her to eat. She has eaten tiny amounts of her usual snack foods since we have been home, but one cannot live and grow on goldfish and rice cakes alone, so we are hoping to add some healthier and more nutritious food to this list.

As the new year is approaching, I have been thinking back on all that 2011 has brought us. It was a tough year, full of so much joy, but also a fair share of sorrow. To best explain the rollercoaster ride that was 2011, I thought I would tell it in photographs ...

We had some sad days ... adjusting life in the hospital and managing side effects from constant chemotherapy was difficult.

But we had many happy days full of playtime and new toys.

We spent a lot of time "hanging out" at the hospital.

And we finally made it outside to enjoy some fresh air on a cool day in March. This would be Phoebe`s first time outside since her diagnosis in October.

We celebrated birthdays.

                                           We enjoyed walks in the fresh air and Spring.


                                        We basked in the sunshine at the hospital's park

And we finally made it home for day trips in April.

Throughout 2011 Phoebe had countless NG tubes, 6 central lines, 2 PICC lines and a hip brace.

For the six months that Phoebe was in patient at CHEO, this was our bed.

We were finally discharged and sent home in late April.

And we spent one blissful week together at home before travelling to the Hospital for Sick Children in Toronto.

The Hospital for Sick Children "Sick Kids" and Toronto was our new home for the next 2 and a half months.

Phoebe had her perfectly matched unrelated donor bone marrow transplant on Friday May 13th, 2011

Many difficult days followed. Phoebe engrafted on day +13 and started to heal. In this picture, Phoebe is holding her soother up to her face because she knows it is a source of comfort and the sores in her mouth made sucking on it or even opening her mouth painful.

Soon, we were all reunited and ...

before long, Phoebe was outside enjoying the "fresh"' Toronto air.

We made it home to Ottawa on July 16th, and on July 28th, on day + 76 we learned the devastating news that Phoebe had relapsed. 50% Leukemic blast cells were found in her peripheral blood.

We spent one month at home searching for options and hopeful for a cure for Phoebe, unable to accept that there was no treatment available in the world. During this time, leaving Phoebe`s Leukemia untreated resulted in 95% Leukemic blast cells in her peripheral blood.

Phoebe celebrated her first birthday on August 8th.

She started to eat again - pizza, avocado, and anything with garlic were her favourites.

At the end of August we travelled back to Toronto and Sick Kids and resumed life in the hospital. Phoebe was enrolled in a phase one clinical trial, using a promising experimental drug. This was considered our only option at the time.

We also applied for a passport and prayed for a cure.

The clinical trial proved unsuccessful, a reinduction of chemotherapy was reluctantly started at Sick Kids and with the help of our doctors we continued to search for other options. On October 5th we boarded a plane headed to Memphis and the hospital of hope - St. Jude.

Phoebe was started on a protocol that used chemotherapy and natural killer cells, harvested from me, to bring about a stronger remission.

She continued to play, grow and do her thing. And before long we heard the wonderful news that she was back in a complete remission and ready for a transplant.

Transplant #2 was on December 1st, using me as a partially matched donor. Many difficult days followed, including a trip to the ICU, but Phoebe slowly healed. Continued to do her thing ...

and was discharged on Dec. 22nd, just in time for Christmas.

Phoebe still has many days of healing ahead of her, but we are entering 2012 in remission with 100% donor cells. Today she started to show an interest in food again and crawled for the first time since her transplant. 2011 brought us to St. Jude and Leukemia aside it was the year that Phoebe learned to crawl, say her first words, cut her first teeth, and try food for the first time. Her fearless big sister Mae turned 3 and appeared to learn a new word everyday, including the words "chemo", "cancer", and "recovering", the third being my favourite, as in "Is Phoebe still 'covering today?". We are hopeful for more firsts in 2012.

The future is bright.

Home for the holidays

2011-12-26T21:04:00.000-08:00

Phoebe is "home". She was discharged on the 22nd and has been with us since. We have also been back to the hospital every day since then too, to have her blood checked, levels of very important anti-rejection medications taken - to prevent Phoebe's body from rejecting the cells, and to have the doctors look her over and make sure that everything is okay. So far, apart from extreme fatigue, weight loss, nausea and diarrea, everything seems fine. Fine, just like the word "well", is a relative term. All things considered, including the fact that Phoebe's little body has just been through extreme trauma, she is doing fine. We have seen many smiles over the past few days, but Phoebe is still not herself. She is slowly coming out of her shell, and getting stronger, spending more and more time awake during the day, and while she is awake she has played with her new toys from Santa. She is not unhappy, but she is not herself.

It was wonderful to have all of us in the same place on Christmas eve and Christmas day, to not have to juggle children back and forth, wondering who would get to see Mae prepare Santa's cookies and milk - which she did expertly and even included a picture, or who would get to see the joyful reaction to Santa's arrival. Jon and I were both able to do it all this year, and for that we are so grateful. Christmas was full and complete and the generosity of family, friends and the folks at St. Jude and the Target House was incredible and overwhelming, in the best way possible.

Although it is wonderful to be together, and it is where Phoebe is happiest, for one of the first times since all of this began, I think that she looks sick. She is thin and tired looking, she has dark circles under her eyes, her skin is dry, with little elasticity or muscular definition. She is no longer the perfectly plump baby with the big chubby cheeks. Her hemoglobin is closer to normal than it has ever been, but it is not reflective in her complexion or energy. She has been through more in one year than most of us will experience in a lifetime. More pain, more hurt, more confusion and heartache and I am anxious for it to be over. I am anxious to have my Phoebe back. Mae too, appears to be anxious for the return of Phoebe. She had commented to many people since she arrived home, that "Phoebe is still sick". Yesterday was the first day since Phoebe has been home that she didn't cry when Mae approached her. It is heartbreaking. I long for the day when they can play together without worry of tripping over feeding and IV tubing, when Phoebe isn't so fragile. I know it will come. Although Phoebe appears to be sick, I know that inside her little body, amazing things are happening. She has now been without a blood or platelet transfusion for almost a week, her electrolytes are stable and within normal range, and her white blood cell count is holding steady. She is exhausted because she is working hard and healing.

We can now think about the future and not be treated like we are crazy and unrealistic for doing so. 6 months ago, we were told by many doctors that Phoebe had zero chances of survival. Zero. Today, there is a wonderful and very real chance that she will survive. We believe she will, and many doctors do too. It is amazing. My hope is that in making it to this point, Phoebe has not only changed our lives, but also changed the lives of other children who may find themselves in a similar and unfortunate situation. There is now a little person of reference. A person to prove what we have always known - that anything is possible.

All set for a Christmas day walk.

100%

2011-12-22T11:33:00.000-08:00

What a difference a day or in this case, two days, makes. We have some answers and very good news to share. There is nothing on the MRI or EEG to suggest that Phoebe was ever having seizures, and the opthamologist, after looking at the video of Phoebe sleeping and eye rolling, said that it is completely normal behaviour. He actually said it is good and something that he likes to see people do. First sigh of relief. Next, he examined Phoebe's eyes, and found the same swelling that the previous opthamologist reported. It is minor, but they have started Phoebe on another medication to treat it, and the plan is to follow it and run some more tests next week to hopefully find the source of the swelling and to prevent any damage to Phoebe's eyes. Phoebe appears to have incredibly good vision and we would like to keep it that way.

The opthamologist had me very worried yesterday when he mentioned that Leukemia can infiltrate the optic nerves - this is something that we know from the past and the reason Phoebe had an MRI at Sick Kids was to rule it out (which it did). Leukemia will forever be on my mind, and the fear of relapse is very real. However, the results of Phoebe's lumbar puncture show that her spinal fluid is clear of any Leukemia, her latest Chimerism test shows 100% percent donor cells, and the MRI shows no evidence of Leukemic infiltration. According to Phoebe's BMT doctors, the likelihood of the optic nerve issue being related to Leukemia, is very very slim. Almost impossible given the treatment Phoebe has received, the results of all of these tests and her twice perfect chimerism. Second giant sigh of relief.

Phoebe's transplant related issues are also working themselves out. Her liver enzymes are almost completely back to normal, her belly is smaller and she is no longer retaining fluid. She is eating again, via her NG tube, and has even sampled some cheerios and other random snack food. Her blood work looks great and she appears to be feeling better, albeit a bit depressed. The doctors have considered all of these things and decided that Phoebe is ready to go home. HOME. To her little home in Memphis to spend Christmas with her family. She will still be monitored very closely in the clinic at the hospital, and we expect to stay in Memphis for at least 100 days post transplant, but she will sleep in her crib at night, and share her days with her big sister.

We are counting up and away from all things Cancer and this Christmas will be the first of many family holidays that we will spend together. It will also be the first Christmas that we will spend as a family as last year Phoebe was in the hospital. There are no words to express just how much this means to us. Before we arrived at St. Jude we worried that Phoebe would not be here to celebrate her second Christmas. Now, against all odds, not only is she here but she is in remission with a full chimerism, and her future is so bright. What she has done to make it here is simply amazing, and we are so very proud of her.

Thank-you for continuing to keep Phoebe in your thoughts and prayers. Your love, support and wonderful messages and words have meant so much to us and have helped to make even the darkest days a little brighter.

Busy, busy, busy Phoebe Rose

2011-12-20T20:01:00.000-08:00

Phoebe has been very busy. Over the past two days, she has seen opthamologists, neurologists, her BMT doctors, she has had an eye exam, an MRI, a lumbar puncture and an EEG (essentially a brain scan). They are trying to determine whether or not Phoebe's odd eye movements and simultaneous drop in her oxygen saturation levels are in fact seizures. They are still trying to put together the many pieces of the puzzle in an effort to answer their and our many questions but this is what we know. We know that the eye exam showed optic atrophy and/or papilledema - we have heard different things from different doctors and we are waiting to hear back from the opthamologist to confirm one or the other, or both. Papilledema is swelling of the optic nerves and Phoebe has had this in the past, it was thought to be drug related and was treated. The atrophy may be secondary to this, but the cause of both, if they are there, must be foud to prevent further complications related to Phoebe's vision. The lumbar puncture showed normal intracranial pressure - they were looking at this because papilledema can be caused by excessive pressure. The MRI showed nothing to suggest any serious problems, just the optic atrophy and/or papilledema the seriousness of which we aren't sure, and did not lead the doctors to believe that Phoebe was having seizures. The EEG (brain scan) is the test that will ultimately tell us whether or not they were seizures and those results will be in tomorrow. We are not sure if the atrophy and the seizure like behaviour are related, but all of this is completely overwhelming and frightening to say the least. It is hard not to know what is going on. We are hoping that the seizure like episodes are simply related to medications, that they go away and never come back, and that they don't cause any more problems or result in any more tests for Phoebe. We are hoping that the atrophy is minor, that it will not affect Phoebe's vision and that it also goes away and never comes back.

In regards to the other transplant related issues, they all seem to be improving. Phoebe's weight and liver enzymes are coming down which means she is less likely to have or develop VOD, her belly is smaller, and although she is still very much not herself, she has been up playing a few times in her bed over the past few days, and we have seen some smiles. Her face lit up yesterday when she caught sight of Mae through the glass of the fishbowl, which was enough to bring tears to my eyes as I was beginning to wonder if I would ever see her smile again. She does seem to be depressed and is at her best when we are out of her room, doing our laps around and around the BMT unit. She actually got very mad at the doctors for arriving just as we were about to go for a walk today, and proceeded to shout and scream at them for the entire visit.

We are hoping for more news tomorrow that will hopefully help the doctors solve the puzzle of all that Phoebe has been up to these past few days. Tonight I have caught a few glimpses of bright, shining and smiling Phoebe Rose, and although they were few and far between, I believe she is on her way back. As I write this she is sitting in her bed watching Baby Einstein and munching on cheerios, she actually smiled and laughed at the sight of those beloved cheerios - that has to be a good sign.

Day +17

2011-12-18T14:24:00.000-08:00

We are out of the ICU. Phoebe has been back on the BMT ward since Friday. We are still working through many issues, but she is improving. Her rash is now completely gone, and her fevers are low grade, occuring about once or twice in a 24 hour period. All blood cultures have come back negative so the fevers are thought to be related to engraftment. Phoebe has been extremely sleepy and even listless and difficult to arouse at times over the past 4 or 5 days. Her oxygen saturation levels have also dropped down to as low as 76, and there have been a few times over the past 2 days that her eyes have rolled to the back of her head - writing that down is about half as difficult as seeing it and I didn't even see it first hand. Jon, being the very thorough and good caregiver that he is, took a video of Phoebe sleeping and eye rolling because he was concerned that she may be having a mild seizure. He wanted to make sure that the doctors saw it and it is sometimes difficult to time these episodes with doctor visits. The video was quite possibly one of the most frightening, and unnerving things that I have ever watched, and it reminded me of how Phoebe looks when she is heavily sedated. The doctors think that she is in fact over sedated because of her pain medications and the fact that her body may not be metabolizing them fast enough because issues with her liver and kideys are causing a build up in her system. They would like her to be more awake than she has been so we can get an idea of how much of this is Phoebe and how much is drug related. So do we, so they have stopped all pain medications in the hopes that all scary eye rolling and sleepy activity stops.

Phoebe's other issues are related to her belly and liver which are still very swollen and enlarged. Her liver enzymes are slightly lower today, but the doctors are still keeping a close eye on all things Phoebe related because we are not out of the woods yet, and she is still at risk for developing VOD.

If I could compare going through a bone marrow transplant to something, it would be jumping out of a plane, but instead of a nice safe and gentle parachute assisted glide back to earth, you are free falling at an incredibly fast rate, anxious and panicked for a parachute to open and save your life. The parachute opens just in time, when the ground is in site, too close for comfort, and you have already avoided colliding with various tall buildings. This obviously causes extreme stress and even some trauma to your body and you live your life aware of just how precious it is, of how close to death you once were.

Every day seems to bring with it another challenge, but it also brings us closer to a cure. It has been almost 5 months since Phoebe relapsed, since we were told that she had weeks to live. 5 months of life, love, growth, experience, and hope. It is amazing what can happen when a person is given a second chance. Despite the fact that the road we have turned on to is not free from bumps, we are confident that it will eventually lead us to a smoother path. We are day + 17, Phoebe has officially engrafted, she has a full chimerism, she is working hard to get better, and the future is so very bright.

Go Phoebe Go

2011-12-15T18:02:00.000-08:00

Phoebe's first night in the ICU was intense. It is a different atmosphere, and our room is near the exit so yesterday while I sat watching Phoebe's rapid heart and respiration rates, I also watched many very sad parents walk by. It is a hard place to be, and I had a difficult time fighting back the tears as I packed up all of Phoebe's things to prepare for the move. Because Phoebe has overcome so many obstacles, I worry with each hurdle that this is all too much for her, that this obstacle will be the one that she won't be able to overcome.

Thankfully, our time in the ICU was not as unpleasant and frightening as I was expecting. Soon after we arrived, Phoebe was started on a steady and regular flow of oxygen to help her breathing, and the nurse quickly got to work at managing her pain. After about 3 hours of watching her struggle just to breathe, things slowly got better. The oxygen helped her to relax and the pain medications helped her to sleep. The steroids worked at bringing down the swelling and inflamation that appeared to be running rampant throughout Phoebe's entire body. Before long, she was resting comfortably and apart from a 5am xray and vitals every 2 hours, she had a fairly peaceful night. Not at all like the night that I was imagining in my head before we arrived in the ICU, but as we learned later, it could have easily gone that other and very frightening way.

It is amazing how quickly things can change direction. Just as they can deteriorate quickly, they can also improve just as fast. Today, the possibilities for good are seemingly and wonderfully endless. The doctors came in to check on Phoebe at the end of the day and commented on how happy they are with how she looks, and on how quickly she turned things around. Phoebe's kidneys and liver have endured a lot of abuse throughout treatment and they and her swollen belly are still being monitored closely. The doctors feel that everything is under control and they expect Phoebe to continue to improve.

Because the past few days have been so wrought with complications, the big problem and reason for this transplant, Phoebe's Leukemia, has been pushed to the back of our minds. We were concerned because Phoebe needed to have steroids today and yesterday, and we were told that steroids can suppress the immune system. The doctors explained that because Phoebe received so many cells, she needed the steroids to help to lighten the load and reduce the stress on her body. They also discussed the weekly chimerism tests that they have started to do to look at the make up of Phoebe's blood cells as a way to monitor and ensure transplant success. Before bringing up the results on the computer, they cautioned Jon, saying that the first chimerism is sometimes mixed because it is so soon after engraftment (in Phoebe's case she could have a mix of her own cells, the first donor's cells, and my cells). And then there it was for Jon and the doctors to see together for the first time - 99-100% donor cells. Donor #2 cells. My cells. Phoebe's is engrafted and she has a full chimerism. Amazing. Surprising. Wonderful, Phoebe Rose.

This is incredible news and a wonderful sign that Phoebe is on her way to living life cancer free. After the week we have had, it is almost hard to believe, but we believe it. Oh, we believe. Phoebe does still have a long way to go to complete recovery and to be considered "cured". The goal now is to successfully guide the graft, the new cells, and to see continued 100% results on chimerism tests. To safely bring Phoebe through all of this.

We have now officially turned the corner. If all continues to go well, Phoebe is scheduled to return to the BMT ward tomorrow. Next stop - Memphis home away from home.

Go Phoebe Go....

The ICU

2011-12-14T17:13:00.000-08:00

Phoebe was moved to the ICU this afternoon. She appeared to be turning a corner this morning, her fevers were less frequent and her rash looked better, but by early afternoon her condition began to worsen. Jon noticed her belly getting harder and more distended, and she looked to be in an incredible amount of pain. Her pain was not being managed well and it escalated which caused her heart rate to increase and her oxygen levels to fluctuate as she was grunting and holding her breath in response to pain. On top of all of this, an xray of her lungs showed inflamation and swelling which was causing her to wheeze and at times making it difficult for her to breathe, plus her kidney function is elevated, and the doctors suspected that she might have VOD (veno-occlusive disease), this is something that she also had with her first transplant and occurs when there are blood clots blocking small vessels and blood flow from the liver. It is serious and not something we want to live through again.

The doctors decided to move Phoebe to the ICU so she can be closely monitored and they are hoping that the corner that we all thought we were turning this morning is still on the horizon. Results from her ultrasound show an enlarged liver, but no evidence of VOD - good news. Her kidneys, although they have also taken a lot of abuse and are struggling to work as well as they need to, also looked okay on the ultrasound. Also good news. Furthermore, Phoebe's pain appears to be somewhat under control, and the doctors have ordered a steroid, of which she has had one dose and her breathing also seems better. The steroid will help to slow things down, as the rapid engraftment seems to be at the root of all of these problems as it has caused inflamation throughout Phoebe's body.

The road that led us to the ICU, is obviously not one that we would have chosen. No one wants to see their child in intensive care, but sometimes, as we have learned throughout this journey, you must take the difficult roads to get to the smooth ones. We are hoping for better days to come, to see Phoebe's beautiful smile and to hear her laughter. We want our Phoebe back.

The final stretch ...

2011-12-13T08:49:00.000-08:00

Apparently Phoebe didn't get the slow and steady memo. Yesterday we saw a slight rise in her counts - her white cell count was .2 and her ANC 100. This came with constant and very high fevers, that barely responded to Tylenol, and a red rash that covered her entire body. It seemed like a huge reaction for so few cells, until we saw her counts this morning. Today her ANC is 1100 and her white count is 1.4. A huge and very fast jump which better explains the reaction.

While it is wonderful that she is engrafting, such a fast jump is not ideal. Phoebe's body is in complete shock and responding with fevers and rash. We have been told that things could get worse, that we could end up in the ICU, but we are taking things one day at a time. Overnight, her fevers seemed less frequent and slightly lower, and apart from being exhausted, she is doing well. Or as well as can be expected. She is not herself; she is weary and uncomfortable, but we are in the final stretch. The sprint to the finish line, as Phoebe's doctor said yesterday.

The treatment for this, engraftment syndrome, is steroids, but because they suppress the newly developing immune system, they will only be given if Phoebe's condition worsens. If it doesn't, then we will simply wait it out. Wait for her body to adjust to the cells and to calm down. The doctors are keeping a very close eye on Phoebe, and we know that they are doing everything possible to bring her safely through this.

While there are many unknowns, a few things are certain. Phoebe is incredibly strong, and although her strength and her spirit are constantly tested, she seems to refuse to back down. No one should have to prove strength, but Phoebe has proven again and again that she is stronger than any cowardly Leukemia cell. She is exactly where she needs to be to get better, and this transplant is clearly very different from her first. If the heat from her body is any indication, her immune system is extremely fired up and that is what will hopefully make the difference and make this our final sprint to the finish line

Day +10

2011-12-11T15:01:00.000-08:00

Since the day of Phoebe's transplant, when she gave everyone a scare with her fevers, drop in oxygen levels and low and then elevated heart rate, her room on the bmt unit has been quiet. Almost too quiet. The doctors come in and comment on her incredible resilience, how good she looks, how well she is doing, how she has no complications. Good, good, good. We should know by now however, that life with Phoebe is never without action. Yesterday afternoon, she spiked a fever that eventually climbed to 40.2 overnight. It came down with tylenol, but has reappeared every 6 hours since then. The doctors suspect it is related to engraftment. She has no signs of recovering cells in her peripheral blood, but they think that her body is starting the process of engraftment and reacting to that. Once again, her immune system is being fired up, and consequently, so is her little body. They expect to see an increase in her ANC and white cell count over the next few days.

To be on the safe side, they have started Phoebe on antibiotic number 4. Just in case there is an infection raging within her they want to make sure that it doesn't get out of control. Apart from a rash (which can be related to engraftment), she does look good, so they think it unlikely that she has an infection that would produce such high fevers. Plus, all of her blood cultures have come back negative. Everyone, including Jon and I, seem to be hoping for and voting for engraftment. Please let this be engraftment.

I feel anxious and worried, mainly because very much of this is unknown. Every symptom that Phoebe has has two or more possible scenarios. One is good, and the other terrible. Instead of focusing on the possibility of terrible, I choose to focus on Phoebe. Yesterday, not only did she start to eat - sampling, chewing AND swallowing a cookie, some cheerios and her favourite ketchup flavoured fries, she said ball, block, bye, more, and something that very closely resembled cuddle. More and cuddle were said together - more cuddle. She is amazing and so is her ability to make it through this.

Before long we will be back to the wonderfully quiet days.

Slow and steady

2011-12-08T22:42:00.000-08:00

Day + 7 today. Phoebe continues to surprise and amaze us with how well she is doing. She improves a little bit every day. She has no signs of mouth sores, something that plagued her at this time during her first transplant, brought on a continuous infusion of morphine, and caused extreme pain and discomfort. Her liver enzymes, and all other things affected by transplant and chemotherapy continue to look good. And she has more energy today, spending a lot of time playing and standing on the mat. She is awake more during the day and she is now getting 25ml of formula an hour with no signs of nausea and no vomiting. She even took a few sips from her sippy cup tonight. We are relieved, and so happy.

Yesterday Phoebe's blood work showed an increase of her white blood cell count. It was .2 and her ANC (absolute neutrophil count) was 100. Today her ANC is zero and her white count is .1. The doctors don't technically call it engrafting until they see a steady increase of white cells and they expect her white cell count to jump around a bit because it is still very early. They are expecting more fevers and stress on Phoebe's body with engraftment because of the way she reacted to the cells initially, so slow and steady is a good thing. In any case, Phoebe's is working hard, making cells, and healing. Three very wonderful and encouraging things.

In other news, Christmas is very much in the air here at St. Jude. The effort that is made to decorate, celebrate and bring joy to an already very joyous place is wonderful. Today Mae and I attended the first Christmas party of many. She decorated gingerbread men and their houses, had her face painted, and Santa's elves were there, all of which made for a very exciting day for her. At our home away from home, our small but very lovely Christmas tree is decorated and all four of our stockings are hung in hopes that both St. Nicholas and Phoebe soon will be there.

Tonight at a very special school in Canada's capital city, Phoebe's Uncle and a group of equally special, generous, wonderful and kind teachers and staff are gathering for their Christmas party. This year they have decided to include a fundraiser for Phoebe in their festivities and for that we are very thankful. The support of our community - our village as I like to think of it, is truly amazing. It is allowing us to be by Phoebe's side today, and has made it possible for us to stay together as a family. There have been times in our journey, before we arrived at St. Jude, when our time together seemed especially fragile, when Phoebe's chances for survival were thought to be very few and her time was measured in weeks instead of the many, many wonderful years that we believe she most definitely has. We were determined to surround her with love, support, hope and faith and we believed that by doing this, we would help her in her fight for life. Thank-you Uncle Pat and his fellow staff for thinking of us, we are so lucky to have you in our lives.

Phoebe has been especially excited and eager to stay awake tonight, full of giggles and smiles, finally closing her eyes at just past midnight. A sign she is feeling better, but also, I am sure a reaction to all of the love and support that is being sent to her from her friends many miles away.

So long chemo

2011-12-06T10:53:00.000-08:00

Yesterday, Phoebe received her very last dose of chemotherapy, hopefully forever. It is high dose cyclophosphamide and its job is to kill some of the many T-cells as a way to prevent graft vs. host disease and also to give Phoebe's body, which has been deep in battle with these cells, a bit of a break. These cells will eventually come back once Phoebe engrafts and her bone marrow starts to make new and healthy white blood cells.

Because of how Phoebe's first transplant went, it is hard not to write "hopefully forever" when imagining that this is the last dose of chemo. The memory of Phoebe's relapse is never far from my mind, and while it is something that we try not to focus on, its memory serves as a constant reminder of how precious and wonderful time is. We unfortunately don't know what the future holds but we hold on to the hope that this will be the last time that chemotherapy will run through Phoebe's veins.

Phoebe is doing well. Her blood work, liver enzymes, kidney function and all of the other things that transplant affects look good. The doctors are slowly starting to feed her again, through her ng tube. Today she will receive 10mls of formula every hour. Not a lot, but it's a start. Her feeds have been on hold since her transplant because there is a worry that she will become nauseous and vomit and possibly aspirate feed into her lungs. There is a risk of developing pneumonia if this happens and that is a risk that no one wants to take. So we are starting slow.

Phoebe is sleeping a lot and when she is awake she is very tired. She still plays and laughs and when she is mad she shouts and makes herself heard, but the spunky and feisty Phoebe is not quite back yet. That too will take some time. And so it is a good thing that we have time, a lot of it, to wait for Phoebe to get better. We believe in a cancer free future for Phoebe and we will wait and fight for as long as we have to to get there.

To all of you who have believed and hoped with us, kept Phoebe in your thoughts and prayers and close to your hearts. Thank-you. There are no words to express just how much this means to us.

Small victories

2011-12-03T11:13:00.000-08:00

Day +2 today. Counting up and away from all things cancer. Phoebe is having a better day. She had a good and restful sleep last night, interupted only once by a very high temperature. Her oxygen levels remained normal, her heartrate when she wasn't febrile was normal, and she even gave her daddy a few laughs. Yesterday at this time, the doctors were planning to move Phoebe to the ICU, thankfully she turned a corner before that became a reality. We have come a long way in a short time.

The next few days and weeks will be filled with much of the same waiting and watching that we have become accustomed to. Waiting for signs of engraftment - of Phoebe's body's ability to make white blood cells, and watching for side effects from the transplant. Because Phoebe is more stable today, the doctors are starting to wean her off of the steroids in the hopes that her body will slowly adjust. This morning they commented that they are happy with how she is doing, and they are hopeful. Phoebe's last pre-transplant chimerism test showed 100% donor cells, so she is still in a deep remission. The stem cells that she received also contained a lot of T-cells, our nurse said that it is one of the largest amounts they have given, which will hopefully help to rid her body of any stubborn Leukemia cells.

Phoebe is tired today and resting a lot. Her body has been through so much and she is doing exactly what she needs to do to get better. We will continue to move forward and to focus on the small victories that each day brings. We are not in the ICU, Phoebe is stable, she is no longer on the monitor, and everyday that passes is another day that she is closer to being cured.

Day +1

2011-12-02T16:13:00.000-08:00

Phoebe received the first bag of stem cells last night. Her temperature slowly climbed as they were going in, and reached 40.3 at its highest. Tylenol wasn't successful in bringing it down, and so today she has a cooling blanket on her while she sleeps. The doctors have decided not to give the second bag of stem cells, instead they are freezing them in case Phoebe needs them in the future. They say that the first bag contained a lot of cells, enough for the transplant to be successful. and that giving her the second day of cells would cause more harm than good. Phoebe's little body needs to start healing now.

Yesterday morning Phoebe was a picture of health. She had learned to get into a sitting position from laying down which was making diaper changes interesting, she was cruising around her crib, laughing, smiling, playing. She was wonderful, joyous Phoebe Rose. This morning her heart was beating at 215 beats per minute, her temperature was high, and at times her oxygen levels were dropping. The overnight change in her condition was incredibly difficult to see, but we were told that it is to be expected. The stem cells that she received were unfiltered, so they contained a lot of T-cells. These are a white blood cell that normally fight infection, and many of them in an unfamiliar body is wreaking some havoc - while this is frightening to see the hope is that this surge of immune system power houses is also wreaking havoc on any leftover Leukemia. On day +4 Phoebe will receive her very last dose of chemo (hopefully forever), and its job is to wipe out some of the T-cells and to ease the stress on Phoebe's body.

Right now Phoebe is resting. She has been sleeping most of the day. Her heart rate has come down a bit and her oxygen levels are normal. She is connected to the monitor and covered with a giant cooling blanket. The doctors have started her on more broad spectrum antibiotics just in case the fevers are not related to transplant, and they are continuing a steroid to counteract some of the reactions that she is having. They are doing everything possible to keep Phoebe safe and this eases some of our stress and worry.

Tomorrow is a new day.

Day -1

2011-11-30T21:24:00.000-08:00

Day -1 today and Phoebe is doing very well. This morning during her visit with her occupational therapist she pulled herself up in her crib and shuffled from one side to the other. This is amazing considering the fact that when we arrived at St. Jude two months ago she refused to stand. Now she is standing and moving and shaking and we are so proud of her.

Today she had her last infusion of ATG and tomorrow and Friday from 9am to 3pm my stem cells will be harvested, taken from me through an IV line in my arm, and Phoebe will get them soon after. I am anxious, excited and nervous, similar to how I felt with Phoebe's first transplant only slightly more nervous because it is my cells that have a big job to do this time.

In the meantime we are loving the joy and happiness that Phoebe and Mae bring to each day. Their visits in the fish bowl attract the attention of many nurses as their smiles and laughter is contagious and so wonderful. A reunion, when it happens will be amazing. Today our doctor planted an unexpected but wonderful seed in my mind when he mentioned the words "home" and "Christmas" in the same sentence. Perhaps a reunion will come sooner than we are expecting.

Anything is possible.

Day - 4

2011-11-27T16:36:00.000-08:00

Today, my part of Phoebe's stem cell transplant began. I received my first injections of G-CSF (granulocyte-colony-stimulating-factor). It is a drug that will stimulate my bone marrow to make white blood cells, causing them to spill out into my blood so that the stem cells for Phoebe's transplant can be taken directly from my vein. I will have 10 injections over the next five days and I was told to expect a lot of aches and pains, that I will probably need something to help me get through, but so far everything is good. The actual injection itself is a bit painful, similar to a very long bee sting as the drug burns while it is being pushed in, but i'm sure it is tiny in comparison to the amount of pain and suffering that Phoebe has endured over the past 13 months.

To date Phoebe has received over 800 injections. Two days after her diagnosis, a standard transfusion of platelets turned catastrophic when she was transfused with 10 times the amount of platelets that she needed. Platelets are the part of our blood that helps it to clot and this overdose resulted in a giant clot developing where a femoral line had just been painstakingly put in. It caused her tiny leg to turn dark purple and to swell to many times its normal size. I remember worrying that she would lose her leg but being too afraid to ask if that would happen. At the time, being so close to diagnosis, Phoebe's blood was already thick due to her high white cell count and this medical error could have cost her her life. One nurse commented after this happened that with the high white count, "Phoebe's blood was like porridge, and now with these extra platelets, it is like mud". Thankfully it resulted only in moments of incredible and unforgettable panic, anger, frustration and fear, and twice daily injections of blood thinners that she still receives today. In the future, once her central line is removed and the risk for clotting lowers, Phoebe will be able to stop taking the blood thinners, but for now they serve as a constant reminder of our job as Phoebe's voice and advocate.

I wasn't going to tell this part of Phoebe's story, as our goal throughout has been to move forward, to focus on the future and to move past any obstacles that we have faced. We are still moving forward, but in this case the past has greatly shaped the present. While I was sitting in the chair today, feeling the pain from the injection, I thought of Phoebe and all of these pokes. To do her story justice this part has to be told. It has shaped us and how we have handled much of this journey. It taught us to question everything, to forgive, to do our best to make sure that we are aware of everything that happens each day, and it helped me to understand and realize that mistakes can be made, even in hospitals.

Now for today and for moving on and forward. Today is day -4 and Phoebe continues to do well. She had a wonderful day yesterday, full of playtime, her favourite baby Einstein videos, a visit to the playroom, and a few laps around the transplant unit. Today and for the next 3 days she will receive a new drug. It is not a chemotherapy but works in similar way to weaken Phoebe's immune system and prepare her body to accept the new cells. It runs over 6 hours each day and because there is an increased risk of an allergic reaction, Phoebe has to be connected to the monitor for its duration. It is called Anti-thymocyte Globulin and is a rabbit antibody. Again, it is incredible what has become normal in our lives. This drug will do what a chemotherapy would do only with less toxicity and fewer side effects - Phoebe's little body has seen enough chemotherapy for one lifetime.

Day - 7

2011-11-24T12:41:00.000-08:00

Each night before Mae goes to sleep, she makes a wish for Phoebe. She always says that she "wishes for Phoebe to come home" and recently she has added, "for Phoebe to get better and better" to her wish. Now when she wakes up in the morning she asks, "is Phoebe coming home today?". It is enough to slowly break my heart because each morning since Phoebe was admitted, Jon or I have had to say no, Phoebe is not coming home today. One day, she will be home. Mae misses her baby sister and also often comments on how much Phoebe loves her. She will say "Phoebe loves me the best", which is probably true. I look forward to the day when they can be reunited, and we are hopeful that this long hospital stay is our last. That these next weeks are the last weeks that I will have to say - no Mae, you can't see your sister today.

It is day -7 and all is well. As I write this, a sleeping Phoebe is receiving the second of six infusions of chemotherapy for today. I can't help but think how "normal" all of this has become. That to watch Phoebe receive so much chemotherapy no longer makes me anxious and worried - it is just a step on our road towards the cure. That is all.

As for Phoebe, she is happy, playful and active. Today for the first time ever, she managed to pull herself up to her activity table. She has been handling her feeds well and has even eaten a few crackers. This is a good sign that she is still feeling well and I am relieved. I worry often that all of this is too much for Phoebe, that being back in the hospital would cause her to be sad and depressed, and so I am happy to see that although i'm sure she is missing Mae and life at home, she is still doing her thing. Joyful Phoebe Rose.

The next seven days will bring much of the same - chemotherapy, visits with Mae in the fishbowl, and juggling life back and forth between the hospital and "home". We are hopeful that we will continue moving along on this very smooth path ... we are almost there.

Welcome Back

2011-11-22T16:05:00.000-08:00

The whiteboard in Phoebe's room in the bone marrow transplant unit reads "Welcome Back!". We are back and today is day -9. In the world of transplants, we count down to day zero, or transplant day, and then we count up. After her first transplant, Phoebe relapsed on day +76. Today none of that matters. Today we have an opportunity to start fresh. Today is day -9.

Phoebe is sleeping peacefully as I write this. She was admitted last night, and was not very happy to be back. She has had a few sad moments today and the effects of her first day of chemo seem to already be causing her some nausea, but she is slowly adjusting to hospital life. She has been smiling and playing with her nurse and showing off her latest trick of making animal sounds - her favourites being to moo like a cow and growl like a lion and we have heard a lot of those sounds today.

Over the next 9 days, Phoebe will receive at least one type of chemo daily. She will have her blood pressure and temperature measured every four hours, and she will be closely monitored. She will not be able to leave the bone marrow transplant unit and her visits with Mae will be through the glass of the fish bowl. The chemotherapy will cause her white count to drop back down or close to zero, giving her nothing to fight off infections, and making space in her bone marrow for her new cells. On day zero and day +1 (Dec. 1st and 2nd), Phoebe will receive infusions of my stem cells. And then we will wait for her new cells to engraft. We know from Phoebe's first transplant that it is the waiting that is the hardest. Waiting and hoping that these new cells, this new life will take root in Phoebe's body and start to grow healthy cancer-free cells is quite possibly one of the hardest things I have ever done ... and now we are about to do it again.

Rock on Phoebe Rose

2011-11-20T21:15:00.000-08:00

Our weekend is coming to an end. It was fun-filled. We celebrated Mae's 3rd birthday 5 days early so that Phoebe could take part, I baked cake, and Jon cooked up some delicious meals, we took long walks, enjoyed a beautiful sun shining day on Saturday, and a rainy day today. Phoebe tried her best not to nap - she seemed too excited to play with her big sister. She ate a few cheerios, and took some sips from a sippy cup - not nearly enough to warrant removal of her ng tube, but it's a start. We finally saw an end to her incredible nausea and vomiting.

We will miss being a family, doing all of these simple and everyday things, and Mae and Phoebe will miss their playtime. I am sad for them, but hopeful that Phoebe's transplant will go smoothly and that soon she will be back with us, where she belongs. I cannot believe that we are already here, about to embark on this huge step towards a cure. Phoebe Rose really does rock.

Two days ...

2011-11-18T20:55:00.000-08:00

Phoebe has a weekend off. She had a blood transfusion today and platelets yesterday, so if nothing unexpected happens, we can spend the weekend away from the hospital. This is great because on Monday, Phoebe will be admitted to the bone marrow transplant unit to start the pre-transplant conditioning. This is 9 days of chemotherapy and is meant to make space in her bone marrow for her new cells. Because this is her second transplant, it is less intensive chemotherapy. The thought among our doctors here is that the high dose chemotherapy that was given with Phoebe's first transplant was not effective, so why give it again when to do so would come with many risks. This time, with this transplant, she will receive less intensive but still effective chemotherapy, followed by 2 infusions of my stem cells in the hopes that her new/my immune system will take care of any remaining and hidden Leukemia cells. This particular type of transplant has seen incredible effectiveness in high risk patients like Phoebe. Chemotherapy is obviously not enough to rid her body of cancer. Her first transplant focused on high doses of chemotherapy to no avail. This transplant focuses on chemotherapy followed by cellular therapy. Let the cells do the work. As our doctor described, because of the sheer number of stem cells that Phoebe will receive, it will act like a kick start to the immune system. And ultimately, it is a properly functioning and kick-started immune system that Phoebe needs right now, and for life.

My stem cells are not an identical match to Phoebe's, so there is an increased risk of Graft Versus Host Disease, which can be life threatening and debilitating. Phoebe will receive 3 different medications to prevent this from happening, she will be monitored very closely as it is a fine balance. Our doctor commented during our pre-transplant conference that this is what they do. They do this all the time. It gives me comfort to know that, but it doesn't make any of this easier.

I have a million questions running through my mind. I have not forgotten about Phoebe's first transplant. About the Veno-Occlusive Disease, the frightening and very high temperatures, the constant need for blood and platelet transfusions to keep her body going, the swelling and bloating, the constant vomiting and diarreah, the life threatening side effects. I have not forgotten. I am just choosing instead to focus on Phoebe, on her spirit, and her wonderful strength. We can do this. We will take it one day at a time, and we will make it through. And with this transplant, there is a good chance that Phoebe will engraft earlier than she did with her first, which gives fewer days without those precious white blood cells.

For now, we have two days and we will enjoy them to the fullest. Two days before this life saving treatment that months ago was just a dream. Two days before we begin the process that will ultimately and hopefully bring us home. For good.

Words to live by ...

2011-11-14T22:29:00.000-08:00

Almost four months ago, after Phoebe's relapse, Jon and I sat together, tears streaming down our faces, and listened as doctors told us to take Phoebe home, to keep her comfortable. That there was no hope. That our journey was coming to an end. A month later, more doctors, this time with a glimmer of hope and a wonderful spark of determination, told us that it would be difficult, that standard treatment would not cure Phoebe. That it was time to think outside the box. The help of these doctors, a lot of luck, determination, perserverence and faith brought us to St. Jude and today we sat in a room with an optimistic and confident doctor who recognized and commented on how far Phoebe has come, on the odds she has courageously beaten down. And his focus on the cure never wavered, often saying "when we cure Phoebe", not if. When. Amazing how one word changes everything.

Yesterday while out for a walk we ran into a man who looked to be down on his luck. His car had broken down . Although we were unable to help him, he seemed determined to talk with us and give us a message. Looking down briefly at Phoebe he said, "I don't know what you are going through, and what you are trying to do, but believe it. Imagine it. Think of it as if it has already happened and it will be". A stranger on the street, whose eyes never left mine and whose words have echoed in my mind ever since. Believe it. It will be. Words to live by.

And so after many tests, Phoebe's bone marrow has shown to be negative for any sign of leukemia or the multi-lineage leukemia gene and her chimerism is still 100% donor cells. Her transplant is scheduled for Dec. 1st and 2nd and it will be an infusion of my stem cells, unfiltered so that it includes all of the cells that will work to fight against any leftover Leukemia. There is an incredible amount of science behind this transplant, great minds have been and are hard at work and I don't know if I will ever completely understand it. I know that it is different from her first transplant, and that it has shown to be very effective in high risk patients like Phoebe. I also know that she is in a good place, she is in a good remission and we are moving forward. Phoebe has done what many thought to be impossible, and although our road is far from being over, I have so much hope that at times I feel like it is hard to contain.

Growing

2011-11-12T10:10:00.000-08:00

Phoebe's bone marrow test went well, and unlike the first bone marrow test that was done when we first arrived, they were able to get a good sample with many recovering cells. The initial results show that Phoebe is in morphological remission. Under a microscope, zero leukemia cells are seen. They are looking deeper and running more tests but these results are encouraging. Yesterday we also learned results of a chimerism test. This is the test that is run weekly to determine the make up of Phoebe's blood; because she has had a transplant and an infusion of my NK cells it is complicated. Last week, 14% of Phoebe's blood was made up of her cells, 78% were from her original donor, and 8 % were mine. Because Phoebe's blood was once full of Leukemia cells, the hope is for her to have no cells of her own. Yesterday I learned the results of the latest chimerism and they are 100% donor cells. Phoebe has never had 100% donor cells, even after her first transplant the most she had was 95%, so this news is wonderful.

Despite this latest result, Phoebe will still have a second transplant. I think this says a lot for the aggressive nature of her disease. As we have learned from the past, Leukemia cells like to hide, stay hidden, and creep up when you least expect it. Like they did in Phoebe's case after 8 months of intense chemotherapy and a bone marrow transplant. This disease is not kind or gentle, or forgiving and it needs to be treated aggressively. I don't think the fear of relapse will ever go away, but we believe. We believe in Phoebe, in our doctors, and in the possibility of a cure. And everyday it seems that we are getting closer.

We have a meeting with our doctor on Monday to discuss Phoebe's transplant procedure, have our many questions answered and hopefully learn more results from bone marrow tests. I am hoping that his answers will bring me comfort and peace before we start the process of a second transplant, but I have come to realize that these doctors and what they are doing is the best that there is for Phoebe, and there comes a point when I have to let go of control and have faith in their knowledge and ability. And I do.

In the meantime, Phoebe continues to do her thing. She loves to play with Mae and is making great strides developmentally. She is also growing. Since our arrival at St. Jude, she has grown 2 and a half centimetres. Go Phoebe go ...

Steps

2011-11-08T20:46:00.000-08:00

We are still at home together in Memphis. Still loving this time together. Phoebe has a bone marrow aspiration tomorrow morning, the results of which we are hoping to know soon. The anxious, nervous feeling that I have never really goes away, but we are choosing to enjoy each moment that we have together instead of focusing on the worry. Phoebe is doing very well. Her love of life and all things not related to the hospital is beautiful. She lights up the room with her smile, and when her sister is in view, her excitement is uncontainable. Today, we took a drive around Memphis and as the wind blew in from the windows and through Phoebe and Mae's hair (Phoebe still has a few strands), their laughter and joy, and Mae's shouts of "the wind is in my hair!", were simply wonderful.

Tonight, because the weather has been incredible and warm, we brought Phoebe to the playground and patio area here at Target House, had dinner, enjoyed the fresh air and time outside. As Phoebe watched Mae and some new friends run and play, she squealed in delight. While holding her she seemed to want to jump out of my arms and if she were able to run, I think she would have does so at that moment. Instead of running, she stood with her feet planted firmly on the ground, and while we held her hands she took a few steps ... and then she took some more.

We are making strides, in as many ways as we can - a few steps forward each day.

Home away from home

2011-11-04T11:13:00.000-07:00

Home again, at our Memphis home way from home. I can't say it enough, just how wonderful it is to have each member of our family under the same roof. This time we have is precious and the tenuous nature of our situation is never far from my mind. We take things one day at a time and hope that Phoebe remains well and without a fever so that she stay an out patient - with us at home.

As I write this, Phoebe is sleeping peacefully at the hospital - getting more platelets and an injection of IL2. The results of the NK chimerism test, the test that looks at how many NK cells are active in Phoebe's blood and how many are mine versus hers, shows that 99-100% are donor cells. This is great news. Phoebe will continue to receive IL2 injections for as long as their are NK soldiers to feed. The hope is that the NK cells will work to rid Phoebe's body of the lingering and stubborn Leukemia cells before we start the transplant process. We will find out results of the next chimerism test this week. Phoebe will have a bone marrow aspiration done this week too, on Wednesday. Everything is steadily moving forward and it feels good.

Although we have been here for almost a month, each time I walk through the hospital doors, talk with Phoebe's doctor, or meet another family, I am reminded of just how lucky we are. We are here and we have this second chance. The time that we have together right now is wonderful in its simplicity. Walking to the coffee shop with Phoebe in the stroller, the fresh air, sharing a meal together, watching a movie - these small and simple things are precious. Their importance is so very clear. I look forward to the day when spending a week with both of my children and my husband under the same roof is not a rare event. I know that to get there will take some time, but it will be well worth the wait.

Hopeful homecoming

2011-11-02T21:53:00.000-07:00

We are still in the hospital but hoping to be discharged tomorrow. Phoebe is doing well, but the doctors want to keep her an extra night because she received another IL 2 injection today, and they can sometimes cause fevers. She has thankfully not had that side effect, so far, and we are hoping that her temperature remains normal. We are anxious to have her back at home, and to be together as a family again before she starts the transplant process and what will be a lengthy hospital stay. Her big sister is also very excited, and I can tell that she misses having Phoebe at home. The first thing she says when she wakes in the morning is, "let's go see Phoebe now".

Tonight and for the past few days and nights, my mind has been on Phoebe and her potential homecoming, but also on another infant Leukemia warrior. Tyler Burdick. Tyler passed away today at 4:33pm, while being held and comforted in his mother's arms. He fought a courageous 28 month battle with Infant Leukemia and died at just 2 and a half years old. His mother, Stephanie, is someone that I greatly admire for her strength, courage and optimism. My thoughts and prayers are with her family tonight. Tyler left this world surrounded by so much love, he touched my heart and the hearts and souls of so many others. There really are no words to express how deeply sorry I am for his family. My heart is heavy.

Hospital Halloween

2011-10-31T15:30:00.000-07:00

Phoebe is back in the hospital. She spiked a fever yesterday afternoon, so she was admitted, blood cultures were taken, and she was started on yet another antibiotic. Her temperature has since come down, and she is still her happy and smiling self, so as long as no source of infection is found and she remains without a fever, she could be returning back home with us as early as tomorrow. If so, this will be the shortest hospital visit in Phoebe's history.

The Interleukin 2 injections that Phoebe receives can produce flu like symptoms, and occasionally fevers, so we are hoping that that is all it is. She has one more injection to receive and then it is all rest, all the time until she starts her pre-transplant conditioning.

Despite the fact that we were in the hospital today, we had a fun-filled and exciting Halloween. Halloween at St. Jude is a really, really big deal, and the people who work here go out of their way to make it a special day for the kids. It is overwhelming in the best way possible. Each area of the hospital chooses a theme and they decorate and dress up according to it. One clinic was dedicated to the muppets, another to Star Wars, the 60's, 70's, and 80's were all represented, there was a zoo, a slumber party, farm, Cruella D'Ville and many, many Dalmations (dressed up, not the real thing), and a rock concert. Michael Jackson, Elvis, KISS, Taylor Swift, Lady Gaga, Justin Beiber - they were all here singing their hearts out - again not the real thing, but possibly better . The kids travel around the hospital, through each themed area, collecting candy. Mae had a blast. Phoebe was upstairs as an inpatient where all of the dressed up staff travel to each room to drop off candy. Because Phoebe has a weak immune system and doesn't eat candy, we opted out, but a bag was placed on her door anyway and filled with things that she might like. Cheerios, animal crackers - no one is left out on Halloween. Phoebe caught a glimpse of Chewbacca, Princess Laya, Mario, Luigi and Snow White walking by her room today and her excitement and laughter were impossible to contain. Thank-you once again to the folks at St. Jude for exceeding my expectations, bringing great big smiles to Mae and Phoebe's faces, and for working so hard to better the lives of all of the children that are here. Next year's Halloween has a tough act to follow.

Dodging bullets

2011-10-29T11:03:00.000-07:00

In our world, uneventful days are the best days. Days free from appointments, blood transfusions, fevers, xrays, scans, and all the other hospital and Cancer related things that usually fill Phoebe's time.

We have now been home together for one week. Each day that passes without fevers or extra trips to the hospital, I thank my lucky stars, God, the many angels who are looking down on us, for giving us one more day as a family. I thank the folks at Target House for understanding that part of healing and living a good quality of life is to be with the ones that you love. I feel very lucky that we are all together, I have met many parents who are here without their spouses, other children, who are isolated and alone.

Phoebe is still receiving her injections of Interleukin 2 - the food for the NK soldiers, and her white cell count is still zero. What happens next depends on Phoebe, on her disease, and on how well she has responded to therapy. A plan for a second transplant is in the works, and we even have a tentative date, but Phoebe's bone marrow first has to be tested. The doctors may decide to move quickly, to start the transplant process before Phoebe has completely recovered from the NK cell therapy. They are concerned that allowing Phoebe's bone marrow to recover white blood cells, also gives her Leukemia a chance to rear its ugly head. It is a fine and delicate balance. Phoebe has been without a functioning immune system, since she relapsed in July. She will be without a properly functioning immune system until many months post transplant. That is a very long time without the ability to fight off infection. Phoebe is dodging bullets everyday. Today, she has 3 open wounds on her body, caused by recent skin biopsies, a PICC line removal, and central line insertion. All of these sights are closely monitored for infection, because the risk is very high. Our doctor describes her as a pin cushion, which is an unfortunate but realistic analogy because her little body is full of marks from daily injections, bruises as a result of low platelets, and wounds. The antibiotics help to keep infections at bay, but we are aware that complete healing only happens with an immune system. A person needs good white blood cells to heal, and right now Phoebe has zero.

At times I feel like I am watching the events of my life unfold as if they are the most frightening and suspenseful movie I have ever seen. I am in the theatre, on the edge of my seat, biting my finger nails, holding my breath, and bracing for the moment in the movie when the entire audience will scream out in pure fear. The paralysing kind of fear that causes your heart to race and your palms to sweat. And then I am waiting for the moment after that scream, when everything is calm. When we realize that it wasn't so scary afterall, just the wind and a dark night.

Today after a morning of playing and crawling around after her big sister Mae - her favourite thing to do right now, Phoebe had another quick visit to the hospital. Monday is a big day of appointments, visits with doctors, blood work for Phoebe and a big day for Mae too because apparently here at St. Jude, Halloween is a really, really big deal. We are hoping that in between her busy schedule, and with her mask firmly in place, Phoebe can catch a glimpse of Halloween, and maybe even pick herself up some kit-kats.

One year later ...

2011-10-26T19:55:00.000-07:00

A year ago today, Jon and I heard 3 little words that would greatly change our lives. Much of that night is still a blur of activity, but those words: Phoebe has Leukemia, those words will forever be ingrained in my mind.

Five days before that fateful night, Phoebe was seen by her family physician who discovered that the lymphnodes in her groin were swollen. Without making her worries clear, she asked us to go to CHEO for blood tests and an ultrasound. We had to make appointments for these tests, and today, knowing the incredible speed at which Phoebe's cancer progresses, this seems crazy. Before our scheduled appointments, and late in the evening after Phoebe saw her family physician, I brought her in to CHEO with a fever. I was worried because I had done some reading and realized that our doctor was suspecting cancer. That night at CHEO, we were seen by two doctors - a resident and an attending physician, I told each of them about the lymphnodes, and the attending physician told me - these words will also never leave me. He said "I know what your doctor is thinking, but frankly, cancer at this young an age, is so rare, it is practically impossible". Impossible. If I have learned anything over the course of this journey, it is that nothing, no matter how strange, unlikely, rare or unexpected, is impossible. In the end, Phoebe was not examined that night and no tests were run to determine the source of the fever. It was blamed on the immunizations she had received at her doctor's appointment earlier in the day and we were sent home. 5 days later we arrived back at CHEO for our scheduled appointments and Phoebe was ultimately diagnosed with Cancer. From the time of her blood tests at 12pm to the time it took us to get back to the hospital at 6, Phoebe's white blood cell count had climbed from 575,000 to 674,000.

If I could go back in time, I would ask those doctors to just do the tests that night. It wouldn't have changed the outcome, Phoebe was always going to have cancer, but it would have meant many thousand fewer nasty cells, the cancer may not have spread to her central nervous system, Phoebe would have been 5 days further into treatment. I am telling this part of Phoebe's story now, because I think that it is important. Phoebe's cancer is rare, but not impossible, and Cancer in children is perhaps not as rare as some may think. Today, 46 children will be diagnosed with Cancer, 7 children will die from Cancer. Despite the fact that Cancer is the number one disease killer of children, childhood Cancer research is grossly underfunded. Some major organizations dedicate less than a penny of total fundraising efforts to children's cancer research. I believe that the more awareness and noise that is made about this problem - the lack of funding, the incredible number of children fighting with or dying from this terrible disease or the children who are living with devastating long term side effects, the more likely there will be change.

And so here we are. One year later, many miles from home at St. Jude Children's Research Hospital. Today Mae and I went to a Halloween party, sponsored by Target Stores for the children of St. Jude and their siblings. It was held in the Danny Thomas/ALSAC pavillion on the St. Jude campus. As we sat listening to music - a live performance by Kelly Pickler of American Idol fame, and talking to friends, something on the ceiling caught my eye. Written there in beautiful cursive writing were St. Jude founder and hero, Danny Thomas's words: "no child should die in the dawn of life". Looking around the room at the many beautiful and courageous children, all in costume, and many fighting for their lives, at the parents who wake up every morning to the reality that their children may not live to see another Halloween but like us are still hopeful, determined, and joyful, I was overcome with emotion. At that moment, the seriousness of Phoebe's disease, her incredible fight, all that she has been through this past year, combined with the many very sick children in that room today, all of us surrounded by so much love and hopeful energy - had me close to tears. Where we are today, in Memphis, is not where we hoped or expected we would be a year ago today but we are so very grateful for this second chance. Thank-you to the doctors and nurses that we have met throughout the past year, who believe that anything is possible, even the good things, and for never giving up on that hope or belief in a cure.

And now for Phoebe, Phoebe is still home and happy. She is crawling, scootching, and doing a bit of standing on her own. Loving her big sister and this time that they have together. Our biggest concerns right now are her nausea and vomiting and the fact that she is, as usual, without a functioning immune system. She has regular visits to St Jude for blood work, transfusions, physical therapy and doctor visits. And we are following her lead, enjoying this precious time that we have together before Phoebe will inevitably be admitted to the hospital again before transplant.

Home is Where the Heart is

2011-10-23T20:41:00.000-07:00

It is often said that home is where the heart is. I think this is very true for our little family. For us, at this moment, home is not defined by the walls that surround us, but instead by the people who live within these walls. We bought a new house and moved in about a month before Phoebe was diagnosed with Cancer. This new house has been lived in by all four of us for less than 3 months. I kind of forget what it looks like. Right now, it is our house, but it is not home. Home is where the heart is, where Phoebe and Mae are, and where we can all be together as a family, be it the hospital, the city house, the Target House, or a tent in the backyard.

So, Phoebe is home and from the moment that she left the hospital with Jon, there was obvious excitement. When I met them at the front door, she was bouncing in her stroller, eager to get out and explore her new surroundings. The giggling and smiling was constant as Mae showed Phoebe around her new "house". Wonderful memories were made.

After a night of sleeping under the same roof. We were back at the hospital today, Phoebe needed platelets and an antibiotic. She will be out patient with very regular hospital visits, for as long as she is without a fever and doing well. We are hoping that these wonderful days and nights together last as long as possible.

While it is wonderful having Phoebe home, it is very busy. Taking care of Phoebe while she is out patient is like having two full time jobs. She has regular and multiple daily appointments and she doesn't travel lightly. Phoebe is on 11 different medications right now. Each of which is administered by Jon or I at home or on the road. There are antibiotics, antifungals, drugs for nausea, reflux, blood thinners, and a few others. This combined with rinses for her mouth to prevent sores, the daily maintenance of her central line and frequent dressing changes, at times it's difficult to keep it all straight. I am thankful that Jon and I are here together, that we can share these daily and sometimes daunting tasks, and that now we can also talk, face to face, about all that is going on.

The plan right now, is for Phoebe to be seen regularly at the hospital. On top of her many medications that she will get at home, for the next week she will also get an injection of interleukin 2 in the hospital. This is something that we all have in our bodies, but giving Phoebe more will help to feed the NK cells, to allow them to thrive within her little body for as long as possible, so that they can best target and kill the Leukemia cells. We like to think of it as the food that will feed the troops and make them stronger. As always, we are taking things one day at a time, this protocol is still considered experimental, and so we are hoping and our doctors are hoping that it will do what it has done for many others like Phoebe and bring about a stronger remission.

Natural Killers

2011-10-21T13:50:00.000-07:00

Yesterday, my natural killer cells were harvested. The procedure took about 3 and a half hours - my blood was taken out, it was put through a machine and the NK cells removed, and the remaining blood put back in through an IV. Today, Phoebe will receive an infusion of my cells. NK cells are a type of white blood cell that are known to fight and kill viruses, and research here at St. Jude shows that they also target, attack, and kill cancer cells. We are very excited by the possibilites that these little cells possess.

Phoebe continues to amaze me. Despite five days of really intense chemotherapy, she is playing like she has never played before. Pulling herself up to her activity table, stacking blocks, standing on her own, using crayons, and making new sounds everyday. She is so full of joy, it is impossible to look at her without smiling. She lights up her room and everyone in it. Her big sister Mae, is equally full of light, joy and smiles, and is on a first name basis with many people here at the hospital. We recently moved to the long term housing, a great place that has been donated by Target Stores. Mae was quick to ask the person who showed us to our "house" if there was a crib for Phoebe. She wants to make sure that when Phoebe comes home, there is somewhere for her to sleep. Very important detail. And to little Mae, a crib makes a homecoming a reality.

About Phoebe coming "home", or to our home away from home. There has been talk of sending her out-patient as early as tomorrow if all goes well with the NK cell infusion. A Memphis family reunion is on the horizon and we are so excited.

Miss Phoebe playing peek a boo with her sock :)

Almost there ...

2011-10-18T13:55:00.000-07:00

Phoebe is doing well. Today will be her second last treatment of chemotherapy and she has had few side effects. She is nauseous and losing her hair, but those things are to be expected. Lately, since Phoebe is doing relatively well with the chemotherapy, the focus seems to be on helping her to better develop her skills. We have had many visits from many different therapists - physical therapists, occupational therapists, speech therapists, all coming to work with Phoebe to help her to improve her skills. Phoebe is a very busy girl. She is also not sure about most of them, and she likes to give each new person a hard time, so their visits usually involve some crying and shouting, some pushing hands away, but if they keep their distance, there is a lot of smiling and laughing. She trusts Jon, Mae and I, but everyone else - as long as they stay back 4 feet, she is happy. We are working on breaking this "force field" - as our nurses at Sick Kids used to call it, but like any relationship it will take some time. For now, Phoebe is working hard. Everyday brings with it some progress. She is babbling, and making new sounds and words, and her little legs, despite all of their bruises from twice daily injections, are getting stronger and starting to hold her up.

Mae and Phoebe have had daily visits in the fish bowl, and even though their contact is limited, their connection is strong and each little face lights up at the sight of the other. We are looking forward to the day, hopefully soon, that Phoebe will be out patient and free to play with her big sister.

As for me, I am preparing to donate my natural killer cells to Phoebe. I have had check ups, x-rays and blood tests to ensure that I am in good health and so far everthing is set for Thursday. The procedure is fairly simple, but long. Both of my arms will be hooked up to an IV for 4 hours, my blood will be taken out, the natural killer cells removed, and the remaining blood put back. I have been giving my cells nightly pep talks to prepare them for what will likely be the fight of their life. They have a tough opponent in Phoebe's Leukemia, but I have a feeling that they will do me proud.

Sister love

2011-10-15T14:11:00.000-07:00

Last night Phoebe moved back to the bone marrow transplant unit, back to the fish bowl and the isolation. We had dinner together before the move and Mae and Phoebe happily played and giggled. I have been trying to prepare Mae for this move, and for the time that she will be apart from her sister. It's hard but I think that she understands what is coming. Her hugs for Phoebe were a little tighter, her touch a bit more gentle, and the time spent more attentive. Mae, who rarely sits downs, was happy to sit with Phoebe on the couch, asking me to put Phoebe beside her so they "could cuddle". And Phoebe was beyond happy to be sitting with her big sister. Sister love and bonding was at its best in Phoebe's room last night. This love between Phoebe and Mae and between siblings, is no match for the fish bowl, it will not be weakened by isolation and separation, it is a love unlike any other.

And now today - today we are back in the beautiful and colourful bone marrow transplant ward. Phoebe is back in her room with the big screen TV and we are back to long, lonely days of isolation. Phoebe can leave her room for walks, or to visit the playroom, but she can't leave the ward. We spend our days playing, reading books, watching Baby Einstein, singing songs and doing what we would probably be doing if we were confined to our home for a day. With the exception of chemotherapy, antibiotics, and the sometimes constant stream of nurse and doctor visits. Today, three different chemotherapies, with possible side effects ranging from nausea and vomiting to difficulties with the heart, liver and kidneys, were infused back to back through Phoebe's central line. While all of this was going on, Phoebe sat up in her bed, hooked up to the monitor to measure her heartrate, oxygen levels, and blood pressure and played. She bopped to the music of her Baby Einstein video, and played. She also talked to some friends and family on Skype. We are very thankful for Skype.

We are hopeful that the next four days of chemo are as uneventful as today's, and that Phoebe continues to do as well and be as happy and joyful as she is today. And we are counting down the days until the next family reunion.

The fine details

2011-10-13T20:02:00.000-07:00

I learned a lot today. We had a meeting with one of Phoebe's doctors to discuss treatment. It was informative, overwhelming, encouraging, and very interesting to say the least. Phoebe's type of Leukemia is rare and difficult to treat, this we know. There is a genetic component to it that is complicated and I don't think I will ever completely understand what it means or how it came to be. It is called the multi-lineage Leukemia (MLL) gene, and is often found in infant Leukemia and one of the reasons why it is so difficult to treat. The cytogenetics testing that looked at Phoebe's bone marorw sample, found this MLL gene rearrangement in 3 % of the cells. This news means that Phoebe definitely has evidence of disease and so she is eligible for the natural killer cell therapy. It also reminds us once again, of just how stubborn and nasty Phoebe's Leukemia really is.

Usually, a bone marrow aspiration is done when the blood counts have recovered because this way, there is more to see and test. In Phoebe's case, her bone marrow aspiration was done early, so although they found zero Leukemia cells, they were looking at a very small sample. Our doctor today said that yes, Phoebe is technically in morphological remission, but this finding was done from an unreliable sample - meaning that if they were to wait longer for the bone marrow to recover they may have found more cells. Or perhaps they wouldn't have found more cells, we will never know because we are moving forward with treatment. The plan is for Phoebe to have 5 days of three different types of chemotherapy, followed by an infusion of my natural killer cells, and the hope is that this will put Phoebe's cancer into a remission that will be deep enough to go to transplant. Considering that when we started treatment after Phoebe's relapse, there was 90% Leukemia cells in her bone marrow, the fact that it is now down under 5% is still wonderful, and we are making great strides in the right direction.

I talk a lot, and I ask a lot of questions. Today, though, I thought to myself - maybe it's better not to know? Before this meeting, I was blissfully unaware. I heard the good R word - remission, and I went with it. I didn't think about all of the fine details, the many things that make Phoebe's cancer and everything about treating it complicated. Nevertheless, my many questions brought a lot of answers. I learned that the NK cell therapy although it is experimental, has been used in treatment at St. Jude since the early 90's with great success. And that in the lab it has been seen to be effective in targetting cells specific to infant Leukemia. That when combined with immune system suppressing chemotherapy, the NK cells attack Leukemia cells. That they do this without the toxicity and many side effects that come with chemotherapy. Many very good things that I would not have known if I remained in my bubble, blissfully unaware. So, I will still be blissful because we are here, we have this second chance, Phoebe and Mae are bonding and happy, and we are moving forward and towards the cure, but I will continue to be aware. Or as aware as possible.

Reunion and Remission

2011-10-11T17:10:00.000-07:00

The long wait is over. The results of Phoebe's bone marrow aspiration and biopsy are in. When viewed under a microscope, zero leukemia cells were seen. Zero. This means that morphologically, Phoebe is in remission. To be in morphological remission means that there are less than 5% cancerous cells in the bone marrow, anything fewer can not be seen under a microscope, so the sample needs to be sent for further testing in order to determine minimal residual disease - basically how much, if any cells are still there. This is wonderful news, a great big step in the right direction and another obstacle that Phoebe has overcome.

The plan for the Natural Killer cell treatment can only be done if Phoebe has some remaining Leukemia cells, so the results of the MRD and other cytogenetics testing will very much determine the path that we take. The doctors think that because Phoebe's cancer is known to be very aggressive, to have the NK cell treatment in addition to another transplant would be best as it would be one more way of fighting the cancer. It seems strange, but they are hoping that Phoebe has some remaining cells. Even if Phoebe has a fraction of a Leukemia cell, it would still be enough to divide and multiply, and so that would warrant the NK cell therapy.

In the meantime, we are waiting and seeing, but also celebrating. We have come so far. Phoebe has once again defied the odds and proven that anything is possible. When we embarked on this part of our journey, when we decided to do everything possible to try to get Phoebe's cancer back in to remission, we were cautioned by many doctors. We were told that it would be difficult, that it might not be possible, that we should just accept this as our fate and bring Phoebe home. We decided that to bring Phoebe home, to choose to keep her comfortable instead of try again, to give up, was not a reality that we were willing or able to face. Phoebe is here, she is fighting so hard for the chance at a life and as long as this is true, we will never give up.

Tonight in Madrid, Spain, a concert is being held in Phoebe's honour. People are joining together to dance, listen to great music, and to celebrate Phoebe. I know that Phoebe can feel the wonderful energy and good and positive vibes coming to her from across the ocean and we feel so fortunate to be surrounded by the love and support of so many wonderful people. Thank-you Madrid!

And to top off this wonderful week, Phoebe decided to wear her mask so she was able to leave her room to explore the playroom. And ....

she has happily been reunited with her big sister.

The Fish Bowl

2011-10-08T18:48:00.000-07:00

It is our fourth day at St. Jude and all is going well. We had a busy first few days here, Phoebe's PICC line wasn't working well so they decided to remove it and put in a central venous line. While she was sedated they also did a bone marrow aspiration and biopsy, so that they can get a better idea of what is going on in Phoebe's little body and to determine how much (if any) Leukemia cells are still there. We will know the results of that on Monday.

The doctors here have told us that they are not expecting Phoebe to be in a deep remission, and so we are taking steps to start an innovative treatment using natural killer cells, harvested from me and transfused into Phoebe following about 5 days of chemotherapy. Natural Killer cells are a type of white blood cell, that have been found to be very effective in killing Leukemia cells and they are unlike anything that we have tried. The doctors say that this treatment should bring about a stronger remission, and the stronger and deeper a remission the better. Following that, our hope is for Phoebe to have a transplant possibly also using my stem cells, but right now we are just taking things one day, and one treatment at a time.

Although she is doing well, Phoebe has seemed quite sad and depressed since we arrived, and we think that she is missing her big sister. Siblings under 7 years old are not allowed on the transplant unit, and the best way to see each other is in an area they call the "fish bowl" - the siblings can look at each other through glass. Mae and Phoebe spent some time making each other giggle through the glass, but it was obvious that it was not the meeting they were longing for. We decided to see if the doctors would allow Phoebe out so that her and Mae could spend some time together. Phoebe won't start her treatment until the 14th, so she is not technically a transplant patient, yet. The solution was to move Phoebe to the oncology floor until she starts treatment, where siblings are able to visit. They have yet to be reunited as Mae has a bit of a runny nose, but I am looking forward to seeing Phoebe's face when they do. I know that it will light up with the love that she has for her sister, and I know that the feeling and the light will be mutual. Mae told me yesterday, that "Phoebe wants her big sister back". And she is right.

Here, happy and full of hope

2011-10-06T08:45:00.000-07:00

Perhaps it was the very hard and serious customs officer that softened when he saw Phoebe, who shared a story with us of a friend's child who had been to St. Jude, let Mae stamp her own passport and lingered as he wished us good luck on our journey, or the warm welcome and cheerful hello we received upon entering Mempis and St.Jude. The triage nurse who greeted us like a ray of sunshine in a bright tye die t-shirt and got a huge and running hug from Mae - the kind of hug that is usually only reserved for very special people, or the lovely and very gentle male nurse's aid who did what I was beginning to think was impossible for someone other than Jon or I , and sucessfully rocked and soothed Phoebe back to sleep in the wee hours of the morning while I watched, speechless and amazed, or maybe it was the beautiful stories of hope that we heard from fellow parents. Or that all of these things combined have made for an unforgettable and encouraging first day in Memphis.

We are here and happy and completely amazed and overwhelmed. What we have seen of the hospital so far exceeds my expectations. The campus is beautiful, and inside the building there is an energy and a feeling that is impossible to describe. On the walls throughout the hospital is art work done by former patients. Beautiful art work that celebrates the life that has created it. This includes an artful alphabet, letters carefully printed by small hands with words that mean something to the little people who wrote them. Things like "v is for vomit, chemo makes me do that", or" j is for joy - joyful moments when you laugh so hard your tummy hurts". Or one that I found especially heartbreaking and beautiful "c is for cancer - cancer makes you need to prove to the world that you are strong enough to beat it". Beautiful words and artwork created by amazing and very strong children.

It is what i saw on the wall while getting a tour of the bone marrow transplant unit, that best captures how I feel and the energy that St. Jude exudes. As we were being shown around the bright and colourful ward that Phoebe will call home for the next little while: the kitchen, play room, family lounge and laundry facilities (yes there is laundry) on the unit, another beautiful piece of art caught my eye. Encased in a very large glass frame were row upon row of tiny and colourful paper cranes - a thousand to be precise. It took my breath away and I stopped to admire it. We learned that the cranes were made for a boy by his classmates while he was undergoing his fourth bone marrow transplant. His fourth. Our nurse explained that this particular boy is now miraculously at home and thriving. His parents donated the cranes to serve as a symbol of hope for other families walking similar paths. The nurse told his story, and then said simply "we don't give up, and he is one of the reaons why". Amazing. Incredible, and a wonderful source of hope.

Phoebe is settling in well. She loved the flight and happily munched on some snacks, slept and cuddled the entire way. She seemed very excited to be out of the hospital and on the taxi ride to the airport was giggling and playing peek a boo with Mae. Her room at St. Jude is quite fabulous and almost hard to believe. It is about the size of a double room at CHEO, but it is all for her. It comes complete with a big screen tv, large and almost spa like bathroom for her, and another bathroom for Jon and I, a parent room with a pull out couch, comfy chairs and another tv, and a wonderful lazy boy for rocking her back to sleep. We are in hospital heaven. The communal kitchen is stocked with a wide variety of snacks and cookies that Phoebe has already sampled and enjoyed.

Our first day has been exciting, overwhelming and incredibly emotional. To think that this place, this city that is very new to us, will be our home for the next many months is hard to believe. We are looking forward to meeting Phoebe's doctors tomorrow and to learning exactly what the plan is, but for now we are marvelling in all of the good things - that we are finally here in this place that is overflowing with hope and love and faith, where Phoebe can get the care and treatment that she needs, treatment that will eventually and hopefully allow her to be back home where she belongs.

All our bags are packed ...

2011-10-03T18:09:00.000-07:00

Phoebe's temperature is coming down. Over the weekend, as time passed, her fevers became less frequent and her mood improved. She still has about one fever a day, but appears to be feeling better. We learned that the particular type of bacteria that was found in her blood, is also inside her PICC line, but that it is not the type that typically sticks to lines, and so as long as things improve, the line can stay. This is line number 5 for Phoebe, and so if we can save her from the stress, infection risk, and sedation that would come with getting number 6, at least right now, we would like to do so.
All in all, we had a good weekend. Despite the uncertaintly of our trip to Memphis, we continued with our packing and preparations. This was a good thing, because after speaking with our doctors this morning, we learned that many people are working to get Phoebe to St. Jude on schedule. The details of how we will get there have yet to be completely worked out, but we are hopeful that it will still happen on Wednesday.

Today my cup of thanks was once again overflowing. I have been spending a lot of time looking back over the past year of hospital life, and marvelling at everything that Phoebe has accomplished. Over the past few days, despite an infection in her blood, and the fact that she probably feels very far from what most people would consider good, she has still been doing her thing. Developing and learning new things everyday. She amazes me. It has been 9 weeks since Phoebe's relapse, since what was quite possibly the worst day of my life, and in that relatively short time, we have come so far. I have come to realize that this time that we have had, may not have been were it not for some very special doctors. Doctors who despite all of the odds that are and have always been stacked against Phoebe, agreed to try - to give Phoebe one more chance. To them, I am eternally grateful. Although our road ahead and the future is full of uncertainties and likely some very difficult days, we are still moving forward, and our goal has never changed. We want and believe in a cure.

As this chapter of Phoebe's story is coming to an end, I would like to take a moment to thank The Hospital for Sick Children, or "Sick Kids" as it has come to be known. While we were here for treatment, we witnessed the work of some very incredible people. Their work, the difference that they make, the lives that they change, proves that it just takes one. Wonderful and life changing things are happening here. Work and research is ongoing, and the folks at Sick Kids are determined to advance the cure, to help Phoebe and those like her. The determination and optimism of our doctors has opened doors for Phoebe that wouldn't have been open otherwise. Phoebe's primary oncologist said it wonderfully today - he said that it is to help people like Phoebe, with the belief that a difference can be made, that gets him out of bed everyday. And we are so grateful that he does.

Another fever

2011-10-01T14:33:00.000-07:00

Over the past year, Phoebe has had more fevers than I can count. With each fever, her blood was sent away to be tested for any signs of bacteria and infection, and each time, countless times, it came back negative. Not this time. No, this time, five days before we are expected to leave for St. Jude, Phoebe's blood cultures have come back positive for bacteria. This means that she has a bacterial infection in her blood. Because the doctors now know what is causing the fevers, they are once again adjusting antibiotics in order to treat the specific type of bacteria that has been found. They know how to treat it, which is good, we just have to wait and hope that the antibiotics work their magic.

What we don't know is how this will affect our journey to Memphis, and we probably won't have any answers to that question until Monday. When Phoebe spiked a fever on Friday, we were told that as long as she is well and her cultures come back negative, she will still go even if she is on antibiotics. Despite all that is going on in side of her, Phoebe, as usual, looks good. She is smiling and loves her playtime. This morning as I was taking out her mat, she started to laugh and pull herself up in her bed, to try and get a closer look, or maybe she was trying to get out, either way she was very eager to start playing.

We are taking things one day at at time, and hopeful that this obstacle won't affect our trip to St. Jude. Everything that is within our control, is under control - our flights are booked, our bags are slowly being packed, and we are preparing ourselves and Mae for the move. Mae continues to tell everyone and anyone that she meets that she is "going to Memphis!" - and I think this time I am going to follow her lead. As long as we keep believing, it will be.

Going to Memphis

2011-09-28T21:35:00.000-07:00

Earlier today I went to the passport office to apply for Phoebe's passport. Thanks to a very thoughtful nurse practitioner at Sick Kids, the photos were taken at the hospital by the hospital photographer. This meant that Phoebe was able to avoid the busy streets of Toronto and a crowded photography shop. With that first step out of the way, and plans to pick up the passport tomorrow afternoon, I called St. Jude to organize our arrival. The doctors would like us there by October 6th (which is also my birthday, so happy birthday to me), and so we are making plans to leave the big city on the 5th. This is all very exciting and incredibly overwhelming at the same time. We have no idea what to expect but from what we have heard, and the few people we have spoken to, our expectations are high.

We received some clarification today, from our doctor at Sick Kids, about what the plans are for Phoebe at St. Jude. It seems that there are a few clinical trials that she is eligible for and what happens will depend on Phoebe, on whether or not she is in remission already and on how deep in to remission she is. She may need more chemotherapy or treatment to help her get there, or if she is in a good remission, she may be able to go directly to transplant. We have a lot of faith in our doctors, we have to as often we are moving forward without really knowing where we are going. We do know now that we are all moving in the same direction, and that is towards a cure and that is enough to keep us going.

Phoebe is doing well, she has been without a fever for the past three days, so she has been taken off all but one of her antibiotics. This means fewer beeps from her IV pump, and more time to play because she is not constantly being premedicated with sleep inducing gravol and benadryl to prevent side effects and allergic reactions from the antibiotics. She has one more day of steroids and another dose of chemotherapy, and then she has a scheduled "wash out" period - part of the eligibility criteria for all of the clinical trials at St. Jude. The plan is to test Phoebe's bone marrow once she gets to St. Jude and then we will be able to see if all of this chemotherapy has been successful and decide what our next steps will be.

We are all very excited to board a plane on Wednesday and to start this next chapter. Although we have no idea what to expect, we know that by going to St. Jude we are going to where Phoebe needs to be right now, and everyday we are moving closer to a life that is free from cancer and all that it brings. Mae is also very excited, and if you ask her she will tell you very matter of factly that she is going "to get Phoebe all better, going to Memphis". Hearing this breaks my heart a little bit as it reminds me of all that Mae has endured, but also of her incredible resilience, her strength and her awareness that she too is helping Phoebe to get better. I believe that her energy and spirit is something that is willing Phoebe to fight, and one day they will both have the chance to reap the rewards of all of our persistance, determination and hard work.

A village like no other ...

2011-09-26T19:52:00.000-07:00

Mae and I had a beautiful and perfect day yesterday. We spent time in the sunshine at the park, we played, went down the slide what seemed like a thousand times and we laughed. Then, while I was pushing Mae on the swing I started talking to the mum beside me, who was also pushing her child. It was a very lovely and "normal" moment. She told me that her daughter, her lovely, giggling, talking and walking child, was 13 months old. I couldn't help myself, I broke down and started to cry. I thought of Phoebe, and all that she is missing. About all of the time that she is spending in the hospital, time that should be spent in the park. For the first time since all of this began, I really and truly felt sorry for myself and my family. And then I thought about Phoebe again. About bright and shining Phoebe Rose, and how she spends her days. She loves life regardless of where she is spending it, and I believe that one day, she will play at the park. She will. And we will make up for all of this lost time.

Crying at the park aside, us cancer parents, we are really no different from any other. Our time is spent in the hospital, we eat our meals on our laps, and we don't sleep under the same roof, but our goal and our purpose are the same. We love, we laugh, we care and advocate for our kids, we want what's best and we do our very best to make that happen. Because this is true, we have learned as much as possible about Phoebe's disease, about how the body works, how chemotherapy is metabolized, long term and short term side effects, the names of more antibiotics than I have ever cared to know, how they work, what they do, we know what anti-nausea drugs work best for Phoebe and how frequently they need to be given, we know how to silence a beeping IV pump at all hours of the morning, how to correct air in the line, fix an occlusion, what position Phoebe's arm needs to be in in order for her blood to flow out of her line, and I could go on and on. I have learned more about the human body in the past 11 months than I ever thought possible. For me that is, I never really paid attention in science class. More importantly, this situation has changed me, at the way I look at the world and at how deeply I value time, family and friends. Because really, at the end of the day - if you have family, friends, love, laughter and time, regardless of where you are or what you are doing - what more do you need?

And so we are making it work. We are surviving the emotional, stressful effects of pediatric cancer, the isolation and separation, very much because we have a wonderful support system. It is often said that it takes a village to raise a child, and in our case, this is very true. Our village - our community both near and far has made it possible for us to be together, to be by Phoebe's side, and the energy, thoughts, wonderful messages and positivity that is being sent to Phoebe from all of you is incredible. Phoebe can feel it. I know she can and it is willing her to continue her fight. There really are no words to express our gratitude. We are truly blessed. And as the season of giving thanks (here in Canada) is upon us, I would like to take a moment to say what I am thankful for - the abbreviated list. I am thankful for our families and friends. I am thankful for Jon. For all of the people who have welcomed Phoebe into their hearts and into their prayers. For doctors and nurses who take the time to sit down and to listen, who dedicate their lives and many long days to helping people like Phoebe. For ongoing research and people as determined to find a cure as Phoebe is to fight her disease. For Mae's spirit, Phoebe's strength and both of their resilience. And finally, I am thankful for time. However and wherever it is spent.

And now for Phoebe ... Phoebe is doing very well, all things considered. She has about one low grade fever a day. Just enough to keep her doctors guessing and on their toes. Communication between here and St. Jude's is ongoing, the latest news being that we should really be getting on with getting Phoebe her passport. The plan for tomorrow is to do just that. Doctors on both sides of the border are working to get Phoebe the help and treatment that she needs and a move to St. Jude's is starting to seem like a real possibility. And that is one more thing that I am thankful for.

Phoebe's on the move

2011-09-24T22:55:00.000-07:00

Putting one foot in front of the other, and moving in the right direction. Phoebe's fevers have been less frequent and low on the fever scale, but they are still hanging around. The doctors are altering her antibiotics slightly just to make sure that she is well covered. Phoebe looks very well, which is encouraging, but to Jon and I, not a big surprise. Phoebe always looks good.

She is now about halfway through her month long re-induction treatment plan. Throughout this time, we have been talking with our transplant doctor about next steps and he has suggested the possibility of going to St. Jude's for a second transplant. The thinking among our doctors seems to be that for a second transplant to give Phoebe the greatest chance at a cure, it has to be different in many ways from her first transplant. They are hesistant to do the same type of transplant a second time and this is where St. Jude's comes in. They seem to have many innovative and novel approaches to transplant for high risk patients like Phoebe, that have also proven to be effective. Our road has been very bumpy and long, so to be able to go to St. Jude's at this point in the journey - it would feel a lot like winning the lottery. The cancer treatment lottery. When to further treat and try to cure Phoebe's cancer has come up against so much opposition, what better place to go than the hospital named after the patron Saint of hopeless causes? We are far from hopeless, but to me, at this moment, they represent what Phoebe also is: a bright and shining light in a sea of darkness. We still have many unanswered questions, and are not sure even if it is a real possibility, but together with our doctors at Sick Kids, we are taking as many steps possible to make it happen.

In other Phoebe news, today I watched her do something that very closely resembled crawling. With a look of obvious excitement and pride, she "crawled" across her mat. Phoebe is on the move, and in typical Phoebe fashion, she is doing it in her own special way. Tomorrow she will start another 5 day course of steroids and as Jon commented today, by the time that is done she will surely be a match for Ben Johnson in the 100 metre sprint. Oh, sometimes, you just have to laugh.

Thank-you blood donors

2011-09-22T19:07:00.000-07:00

A fever, in the cancer world, is a very scary thing. Phoebe has had fevers off and on for the past 2 days. Not high and not constant, but they are there and we don't like them. The doctors have re-started her antibiotics, as in lieu of a functioning immune system, they are the next best thing. Her current antibiotic count is now four, one is an anti-fungal and the other three protect against various types of bacteria. She has also been started on an anti-viral drug, a preventative measure because she is high risk and the doctors aren't sure what is causing her fevers. Despite all of this, Phoebe looks great. The doctors come in to see her and the look on their faces is one of pleasant surprise. She is defying the odds. One of our nurses told me that after reading Phoebe's chart and history, she braced herself for the very sick baby that she was sure she would meet once she entered Phoebe's room. She too commented on her pleasant surprise. Despite all of this, the look on the doctors faces, the comments of nurses, I am all too aware of just how fragile and precarious our situation is.

Right now we are doing what we do best, watching and waiting. And hoping. Hoping that Phoebe's fevers are not a result of something more serious. As for Phoebe - well, she is Phoebe. Quite possibly the happiest baby I have ever seen and spending most of her days doing what she does best. Laughing, smiling and playing. She is also very feisty and so when she is not smiling, she is getting very angry with her nurses and doctors when they approach her with their stethoscope. She does have some side effects from the chemotherapy, mainly nausea and a decrease in her appetite, but there is a real disconnect between the Phoebe that shows up in blood work to the Phoebe that we see playing and laughing everyday. The Phoebe that we have come to know is mighty. She has never paid attention to what her blood has to say. She takes each moment as it comes, rejoices in the simple things in life, and she greets each day with a smile on her face. We can all learn a lot from Phoebe.

And so in addition to watching, waiting and hoping, we are continuing to follow Phoebe's very strong lead. Everyday we watch Phoebe for signs and symptoms that all of this is getting to be too hard, and each day, Phoebe tells us in her own way, that she is all right. Today her blood works shows us that the chemotherapy is working. Her white cell count is .5 and her other blood counts are also falling. Today she will have a red blood cell and platelet transfusion. Thank-you blood donors, I don't know what we would do without you.

Thank-you also to all of you who have been hoping with us, and praying for Phoebe. It truly means so much to us.

Hospital life

2011-09-19T19:36:00.000-07:00

Phoebe's tests went well on Friday. She happily munched on a piece of pizza shortly after with her big sister as we anxiously awaited the results. Her spinal fluid is still clear of any Leukemia cells. Great news. The increased pressure that was there during her last lumbar puncture is gone and so her drug count is now down by one as that problem is considered fixed. We are still not sure what caused the increased pressure, the culprit seems to be one of the drugs she took post transplant but we may never know for sure. Her bone marrow showed a 60% reduction in blast cells. The doctors are pleased with this result as it is a significant decrease when we are only 4 days into Phoebe's new treatment plan. We remain cautiously optimistic and very hopeful that the next bone marrow aspirate will show that Phoebe's cancer is in remission.

We had another meeting with our doctor today, and the plan is to keep going forward with Phoebe's treatment and to test her bone marrow again in a month. We have had some bumps on the road so far, related not to Phoebe but instead to the plan. Over the weekend we discovered that one of the orders for a very important drug was not done properly, which resulted in Phoebe missing a few days of treatment. The problem has since been rectified and the treatment plan altered slightly to compensate and we are now back onto a straighter path. We have had our share of hospital related bumps on our road to recovery and this weekend we were reminded that even when things are checked and double checked, mistakes can still be made in the hospital world. We are Phoebe's voice and it is our job to advocate for her and to make sure that her team is 100 percent present and behind her treatment plan.

Our weekend was not free of stress, but we enjoyed the time we spent together. Mae and Phoebe had some wonderful playtime - building towers, crashing them down and enjoying dinner together in Phoebe's little room.

Days and nights spent in the hospital are long. Days are made busy and full with play time, visits from Mae, various doctors and nurses, naps, walks, story time and videos. We do our best to keep Phoebe entertained and stimulated, and we are more than rewarded by her many smiles and joyful laughter. At night time, after Phoebe goes to sleep, we find ourselves with many quiet hours. Jon uses this time to develop one of his many hidden talents.

This is one of my favourites. Beautiful Phoebe Rose.

The very hungry Phoebe Rose

2011-09-15T19:18:00.000-07:00

Just as in the regular world of soccer moms, hockey dads and so on; in the world of pediatric cancer, there are cancer moms and dads. I'm not sure how I feel about being called a cancer mom, I would rather be a soccer mom - but such is life. We have developed very close friendships with many of the wonderful and truly amazing parents that we have met on this journey. At CHEO, many of the rooms are semi-private, and our roommate often became a sounding board, someone walking the same road who truly understood the intense emotions that come with having a child with cancer. I was speaking with a fellow "Cancer mum" the other day. Her daughter is also here at Sick Kids, receiving treatment to cure an aggressive brain tumour. What she said, captured exactly how I feel. She told me that she feels like she has a wound. With each day that passes it slowly heals, but each time the doctors speak to her and focus only on her daughters's risk of relapse she feels like they are putting a knife to her wound and forcing her to start the healing process all over again. Do they think I don't know, she said, that my daughter's cancer is aggressive? I think just as our children need to heal, so do we as parents. We heal a little each day, and then, just as this mum described, our wounds are re-opened by a few harsh words. We know statistics, and chances, and risks. We really do, but when faced with the reality of this terrible disease, we choose to hope. To hold on to our own chance for a cure.

So, here we are. Day 2 of Phoebe's re-induction chemotherapy. As I write this Phoebe is receiving her second dose of chemotherapy. It is a new drug that is being used in some re-induction therapies for relapsed Leukemia, and one of the few new drugs that has been added to the long list that have proven to be effective in treating ALL. It is a bright and unusual colour of blue and it also comes with a long list of side effects. So far, Phoebe is handling everything very well. Her appetite and interest in food is increasing, most likely a result of the steroids, and today at lunch time her menu resembled a page from the story 'The Very Hungry Catepillar'. She ate half an avocado, some banana, a bit of chocolate pudding, some cheerios, a lot of zesty tomato puffs (made by gerber, Jon calls them baby junk food, and Phoebe loves them) and a few bites of kit kat. An odd diet for a one year old, I know. But really, whatever Phoebe wants - Phoebe gets.

The chemotherapy causes Phoebe's other blood counts to drop and today she needed a platelet and a red blood cell transfusion. For the second time since Phoebe's diagnosis, we learned that there is a shortage of platelets - this is the part of our blood that helps it to clot and is obviously a necessary thing. To help to balance out the supply and demand, Jon gave blood today. While he gave blood, Mae played, laughed and created to her heart's content in a lovely drop in centre that we discovered on the main floor of Sick Kids. This wonderful place is for siblings of patients at Sick Kids, is open all day and is staffed mainly by volunteers from the Women's Auxiliary. When Jon went to pick Mae up, she told him she wasn't ready yet - could he come back later?

Tomorrow morning at 10:30am Phoebe will have a bone marrow aspiration and lumbar puncture with intrathecal chemo. The bone marrow aspiration will allow the doctors to see how well Phoebe's bone marrow is responding to treatment. In a perfect world, it would show a bone marrow free of any Leukemia cells, but as we know very well, this world that we are living in - the world where children get cancer, is far from perfect. So instead we will hope that Phoebe's bone marrow shows a good response to the treatment and a reduction in the number of cancerous cells. When her bone marrow was tested a month ago, 85% of the cells were cancerous. Her white cell count is 0.7 today which is a significant drop and proves that Phoebe is responding very well to treatment, but the real proof will be in the bone marrow. Phoebe's new treatment plan consists of 4 weeks of chemotherapy, and this bone marrow test is the first of 3. It will be tested again in a week in order to continue to monitor progress and to ensure that Phoebe remains on the road to remission.

A plan ...

2011-09-13T15:08:00.000-07:00

This morning, at the suggestion of our oncologists, we met with the palliative care team. A doctor and nurse who specialize in palliative and supportive care came to Phoebe's little room to speak with us. We were dreading their visit. We felt that bringing them into the picture meant that we would need to prepare for the worst, and we were frustrated at our doctors for suggesting this as we felt that it was one more way that they weren't listening to us. Thankfully, we were wrong. We learned that although to meet with palliative care specialists usually means that your child's condition has worsened and that their options are few, part of their job is to support families through difficult decisions, and to help Phoebe manage symptoms of her disease. They agreed that as long as there are options we should pursue them and after speaking with them and explaining how we feel and what we would like - for the first time in a few days, we felt like we were really listened to.

Now to go back ... yesterday our meeting with two of Phoebe's oncologists was frustrating. Frustrating is the best word that I can think of to describe it but it really doesn't do the meeting and how we felt justice. There have been times throughout this journey where we have felt like not only are we fighting cancer, we are also fighting against and with doctors - trying desparately to be heard,. All of the doors that had been open to us before the clinical trial seemed to be closing, and all of the hope that we felt was shared by our doctor was suddenly gone. The meeting was to discuss options, and once again we were given two. Take Phoebe home, keep her comfortable and enjoy this time, or try once again to cure her. We were clear and straightforward in our speaking, we had decided before they stepped foot in the room. We want to move forward with curative therapy. To this, the doctors said - okay i'm hearing that you want to go ahead with treatment, but I am going to give you a couple more days to think about it. Really? As I write this, I am still angry.

So that was yesterday, and today is a new day. After the meeting with the palliative care team, we had another meeting with Phoebe's oncologist. It would seem that despite our frustrations, we were listened to and our wishes were respected. A plan has been put into place that includes a re-induction of chemotherapy with a goal of remission. Once in remission, the next step will be a second bone marrow transplant. The plan is loose and many details, mostly related to the transplant need still to be worked out, but the intended outcome is to cure and we feel relieved to finally have a sense of where we are going, and how we might get there.

As always, we are going to take everything one day at a time and we will continue to take our cues from Phoebe. Bright and shining Phoebe Rose. We know that the treatment may make her sick, and that she will probably have some difficult days ahead of her, but we are hopeful that those difficult days will lead us to a cure.

Super Baby

2011-09-11T12:09:00.000-07:00

Yesterday morning, after meeting with Phoebe's doctor and seeing that her white cell count had only climbed up 3 points to 40, we decided to wait - we desperately wanted the study drug to prove to be as magical and promising as it had in the beginning and our doctors remained hopeful in that possibility. By mid afternoon, her white count had climbed to 65, and it became painfully clear that the study drug, although it appeared to work very well in the beginning was not successful. We quickly moved on to Plan B and started Phoebe on chemotherapy in order to bring her white count down and help to ease some of the symptoms of her Leukemia. Phoebe is quite asymptomatic, her only trouble being her very large belly - made large by a growing liver and spleen that is most likely also full of Leukemia cells. Because her belly is so big it is pushing up on her lungs and her breathing is heavy and laboured. She is still getting enough oxygen and able to play and be her one year old self, but it seems that she is working harder. We hope that the chemotherapy will help to relieve some of this burden and allow Phoebe to be more comfortable.

We are meeting with Phoebe's primary oncologist on Monday. He is a wonderful doctor, full of knowledge, hope and optimism. A main focus of many of his is drug development and he is working to bring additional treatment options, new drugs and clinical trials to Canada. We are anxious to speak with him and to learn more about next steps and to hear his ideas on what the best treatment is. To treat such an early relapse seems to be fairly rare and at times we feel like we are in uncharted territory. No one seems to know how Phoebe's bone marrow will handle aggressive chemotherapy and if it will recover. To prepare for what will most likely follow a remission, we have also spoken with Phoebe's transplant physician who agrees that it is worthwhile to try to treat Phoebe's cancer but wants a second transplant to be innovative and novel as standard treatment was not successful. We all agree that all things related to treatment must be taken one day at a time with a first goal of getting Phoebe safely through a re-induction of chemotherapy and her cancer back in remission.

Today, after one dose of chemotherapy, Phoebe's white cell count has fallen to 23. It is a step in the right direction and we are anxious to take many more steps this way. As for Phoebe she is handling things very well. One of the drugs she has started is a steroid, which comes with many short term side effects. Among them, is an increased appetite. As I write this, after polishing off nearly half of an avocado, Phoebe is happily munching on a banana. The steroid also affects Phoebe's mood and behaviours as it would a bigger person too. Phoebe becomes somewhat of a super baby. She plays hard - lifting her toys above her head and then crashing them back down on to the mat, all the while hollering in what can only be described as a tarzan type of way, babbling and squealing. She is restless, very excitable and harder to settle down for a nap, but still very joyful. Before all of this, I could never have imagined giving my baby steroids, but they like many other things we have encountered on this journey, are a necessary evil. They work to fight against the cancer, and that - is a good thing.

Anything is possible

2011-09-09T16:55:00.000-07:00

Over the past couple of days we have had many meetings with many doctors. Trying to decide what the best course of treatment is. The study drug, although it appeared to work very well during the first 2 doses, has not seemed to have had any effect on Phoebe's cancer since then. Because it is an experimental treatment, no one seems to know what it will or can do now, but there seems to be hope among the doctors and they feel that it may still have an effect. All of this considered, we decided to give Phoebe the final dose today, and to watch to see if anything happens. In the event that nothing happens and her white cell count continues to climb, we will pull her off of the study and begin standard chemotherapy. No one is giving up.

Today, Phoebe's white cell count is 37. We seem to be back where we started which is frustrating to say the least. If it is higher tomorrow, the doctors are recommending chemotherapy with the initial goal of lowering Phoebe's blast and white cell count. This chemotherapy will help to control symptoms of Leukemia which will also help to make Phoebe more comfortable. Then, more chemotherapy drugs will be added with the goal of getting Phoebe back in to remission. Because this is the first relapse of Phoebe's cancer, the statistics regarding her chance of getting back in to remission with standard chemotherapy are good. Well, I think they are very good especially compared to all of the other statistics that we have heard over the course of treatment. The challenge it seems, is what to do once (because we will get there) Phoebe gets into remission. There are many unknowns and we have many unanswered questions. It is difficult to move forward without really knowing where we are going, but we have faith in our doctors and we believe that there is a light somewhere at the end of all of this, we just need to find it.

Now for what we do know. We know that our doctors are working very hard to find answers, and we are reassured to know that they are searching for the best possible answers for Phoebe. We are aware that little is known about treating such an early relapse, and because we are reminded almost daily, we know that Phoebe's chances are very small (albeit mighty). We know that each day is a cause for celebration because it is one more day that we have with Phoebe and another day that she is closer to a cure. We know that many people are working behind the scenes and we witness first hand how the research and search for a cure is ongoing and advancing everyday. We believe that a cure will be found in this lifetime. And more than anything, we know that it just takes one. One child, one doctor who believes that anything is possible, to make miracles happen.

Please take a moment tonight to tell your loved ones just that ... that they are loved. It is so important. And please keep our Phoebe in your prayers. She knows that she is loved and that is so important to me.

All you need is love ... and Kitkat

2011-09-07T17:43:00.000-07:00

Today Phoebe is going to receive the fifth dose of the study drug. Her white count has now climbed to 22 and we are hoping that this dose will bring it back down. If not, we have some difficult decisions to make, and more difficult days ahead. I think it may be safe to assume that if Phoebe's white count continues to climb, even after this dose, that the study drug has not worked. The doctors have started her back on the mild chemotherapy that she was on before the study, to try to keep things under control in the event that the treatment isn't working. Because the therapy uses an antibody to fight the cancer cells, there is a chance that Phoebe has developed a resistance to it, which might explain the initial success and the now climbing counts.

We spoke with the doctor today about next steps and what we will do if the treatment is ineffective. The option seems to be to try standard chemotherapy, but there are still many unknowns and no real plan in place to follow a remission. It has only been 4 months since Phoebe's transplant and we are unsure whether a second transplant is a real possibility. Phoebe will need to be in remission, which means that her bone marrow is free of Leukemia cells when viewed under a microscope, in order to have a second transplant. So that remains the focus right now. Standard chemotherapy has proven to be successful, it worked the first time to put Phoebe's cancer into remission so we are hopeful that it will do the same this time too.

I think the reality of this situation, the severity of Phoebe's cancer, and the small but mighty chance that she has of survival are slowly sinking in. Watching her white cell count climb over the past few days has made me realize now even more how aggressive her disease is. Many thoughts have been floating around my head, and I often force myself to push them out and to focus on that small but mighty chance that we still have to fight and win this battle. For now, our main focus as a family is to enjoy each day and to take things as they come. This means multiple visits from Mae, lots of play time and dinners together in Phoebe's little room, and laughing ... as much as possible.

The picture below is Phoebe discovering and very much enjoying one of life's most delicious treats ... chocolate - a KitKat to be precise. I know some people might think it crazy to feed a one year old a KitKat. I don't think Mae had chocolate in a non cake form until she was at least 2, but Phoebe likes it and it makes her happy and so she can have it.

We have joy

2011-09-05T19:25:00.000-07:00

Phoebe received her 4th dose of the study drug today. We are still very hopeful, but over the past few days her white blood cell count has been slowly climbing and today she had blast cells in her blood. We are continuing on the trial, as it seems that it is too early to decide whether it is effective or not, and we are hopeful that tomorrow's blood work will show better results. As for other bridges that hold different treatment options - we will cross them when the time comes.

Leukemia aside, Phoebe is doing well. Smiling, playing and babbling and making many friends at Sick Kids. She has daily visits from her big sister who is also making many friends at Sick Kids. Phoebe's face lights up when Mae walks in the room and she loves to get hugs and kisses from her sister. It is wonderful to see them bonding and developing a close relationship despite the abnormal situation that they are in. Mae is adjusting well to her big city life and the routine of switching back and forth between Jon and I that has become somewhat normal for her.

Phoebe spends most of her days doing what she is doing in the pictures below. Smiling, playing and laughing. The other part of her day is spent sleeping, being poked by doctors and nurses, and having her vitals taken, but it is these moments of joy that truly matter. It is these moments that propel us forward and help us to believe that anything is possible.

Busy Phoebe Rose

2011-09-02T14:30:00.000-07:00

Thursday, September 1st 2011

As I write this, I am waiting in the basement of the hospital, in the MRI reception area. Phoebe is doing great, she looks well, is happy and full of energy, but right now she is having an MRI done - the doctors are looking at images of her brain - and I am having a very difficult time with this. We have seen many doctors on our journey, from many different specialties, but neurologists - I was really hoping we wouldn't see neurologists. Yesterday after Phoebe's CT scan, which also looked at her brain, but didn't give the doctors enough information regarding her nerves, we were told that Phoebe's scan looked good. Not normal, but normal for a child who has undergone chemotherapy. What does this mean? I guess it means that chemotherapy, despite the many times we were told that it has little impact on the brain, really does.

I took Phoebe down today, she was sedated which in and of itself is difficult. To hold your baby and feel her go limp in your arms, to see her eyes roll gently to the back of her head. Each time I bring Phoebe for a procedure that requires sedation I hold her and whisper that it will be okay, and then I leave the room and the tears start to flow.

I waited in the waiting room for an hour an a half, which is twice as long as they told me it would be. There is an element of fear in each of our days. I am afraid of complications, of what is happening behind closed doors, of what the doctors are thinking, and ultimately of what the doctors will say once the procedure is over.

I am also a bit obsessive about the brain and development as probably most parents are. When Mae was a baby, after each round of immunizations I would obsessively watch her to make sure she was still making eye contact and acting "normally". Through all of this, I have discovered that "normal" is a relative term. What was normal for Mae, is very much not normal for Phoebe. Phoebe is Phoebe and regardless of what her brain looks like on a scan, she is developing and learning everyday. There are areas where she has some delays related to the fact that much of her first year has been spent in the hospital, but she will catch up and regardless of treatment and what she is going through on any particular day, she is still learning and developing. In the past few days alone she has learned to point, has made more new sounds, and she recognizes and waves hello and goodbye to all of her new doctor friends.

Now it is the end of our day. We have heard some good news and some not so good news from our doctors. The good news is that Phoebe does not have any signs of Leukemic infiltration on her optic nerves. Her optic nerves, in the words of her doctor are "pristine". The not so good news is that she does have papilledema - which means that she has swelling behind both of her optic nerves which sometimes happens when there is increased pressure in the brain, but according to the neurologists, her MRI and Phoebe, she has absolutely no symptoms of this which is reassuring to the doctors. Tomorrow she is scheduled to have a lumbar puncture which will help them to decide what to do next in terms of treatment.

"Two visit Phoebe" is living up to her reputation, only now it is based on the fact that at any given time she has two issues for her doctors to think about that require many visits from multiple doctors each day. As for the fairly large issue of her relapsed Leukemia, her white cell count is 1.5 again today and she just received the third dose of the study drug. On that front all seems to be going well, she has had no side effects from the treatment and she is still happy and joyful Phoebe.

Back in the Big City

2011-09-01T10:20:00.000-07:00

And so we are back. Back to Toronto, to the "city house" as Mae calls it, and the hospital. To juggling all aspects of life back and forth. To surviving. Phoebe has started her treatment and has received the first 2 doses of the study drug. Her white cell count today is 1.5, so it has dropped quite a bit after these doses. Our doctor also says that her liver and spleen are not as big as they were when she was admitted (the Leukemia likes to hide out in these organs which causes them to become enlarged). There is hope and it would seem that something is working.

Phoebe is doing very well. As usual, she is full of smiles and she is adjusting to life back in the hospital. She has happily had daily visits from her big sister, and many of her doctor and nurse friends from 8B.

Her eyes were tested a few days ago, as part of the study and the opthamologist found something that was unexpected. They told us that her vision is good, but that her optic nerves are swollen and irritated. A few days before this, Phoebe had a lumbar puncture with intrathecal chemotherapy, but because the eyes of a patient undergoing chemotherapy are almost never tested as part of their protocol, no one knows if this in itself can cause irritation and swelling. As it can indicate a number of very serious problems, we have had visits from neurologists and they ordered a CT scan, which did rule out most serious complications. Our oncologist is concerned that the swelling of the nerves may be related to Leukemia. Sometimes, the Leukemia can hide out in the nerves - he called this place their "sanctuary" because traditional chemotherapy can't get to it. Phoebe has no symptoms of this and her vision appears to be very good, but to rule it out, Phoebe is scheduled for an MRI today. If by chance this is what they find, then it will give us a lot to think about regarding the next steps. There has been a lot of mention of radiation in preparation for another transplant (after Phoebe gets back in to remission), and I think that if Leukemia is found in her nerves, radiation is the only treatment that is known to get to it and it will help us to make that decision.

All of this was found by accident but in a way it is helping us to make decisions about next steps, and once again we are aware of just how aggressive this disease really is. For now, we are making progress and focusing on the good things. Taking everything one day at a time and happily watching Phoebe's white blood cell count fall.

Day 1

2011-08-29T19:57:00.000-07:00

We made it to Sick Kids. We drove to Toronto together which was nice as it was time that we were able to spend together as a family of four outside of the hospital. We arrived at Sick Kids late Sunday night, checked Phoebe in and she was soon settled down to sleep. This morning we were woken up early by our doctor and it was non-stop action all day long. Phoebe received the first dose of the trial drug at 5 o'clock. Her room was busy with many nurses and her doctor coming in to check on her, monitor for side effects and check her vital signs every 15 minutes. Everything went very well. Phoebe woke up part way through the infusion, and wanted to play. She was happy, excited and joyful. She sat up in her crib and waved at the many people that came in to see her.

Today was a good day. I feel like we are finally back on the road to recovery. There are still many uncertainties, but we are where we need to be to help Phoebe get better, and we are making progress. Phoebe will receive this new drug 3 times a week for 2 weeks. She will be closely monitored and her blood will be tested every day. Because the drug is designed to target Phoebe's Leukemia cells only, our doctor thinks that by the end of this week we should have an idea of whether it is effective or not. If it is working, we will continue on this path, if not we will move on to standard chemotherapy. Either way, we believe that Phoebe will get back in to remission.

There was a lot of hope in Phoebe's little room today. Our hope for a cure for Phoebe's cancer was made stronger by the hope of her many nurses and doctors. Many people lingered in her room, watching her play and marvelling at just how happy she is. Through all of the blood pressure monitoring, the listening to her heart and chest, the countless temperatures ... as long as Jon and I were close by, she played and she laughed and she smiled. In her own way she was telling us that yes ... every little thing gonna be all right.

Back to CHEO

2011-08-27T11:52:00.000-07:00

Yesterday Phoebe's white blood cell count was 34, it is still under 50 so she is still eligible for the clinical trial. Good news. When we left CHEO in the late afternoon we were expecting it to be our last visit for a long time. Phoebe had other plans. Late in the evening she spiked a fever, and when her temperature didn't appear to be coming down on its own, we packed her up in the car and headed to the emergency department of CHEO. Because of her relapse and recent bone marrow transplant, her immune system is non-existent so a fever is taken very seriously. We were quickly ushered in to an isolation room, blood was taken, an x-ray was ordered, and Phoebe was once again hooked up to countless wires and tubes to monitor her blood pressure, oxygen and hydration. We saw 3 doctors and answered a thousand questions. Much of it felt like it did in the beginning, but at times the questioning seemed to be less about Phoebe and more for the sake of satisfying curiosity. I told and re-told stories of my uneventful and healthy pregnancy and delivery, Phoebe's first few weeks in the world, her diagnosis, her treatment ... how she is doing today both physically and developmentally all while holding an exhausted baby in my arms - after the 3rd and final doctor left I was fighting back tears and wondering how all of these questions really relate to Phoebe's fever.

Finally at 4 o'clock in the morning, we were brought up to our room on 4 north which ironically, is the same room that Phoebe was brought to 10 months ago after she was diagnosed. Her temperature had come down with tylenol and she was started on broad spectrum antibiotics just in case she has an infection brewing. She didn't mind being back in the hospital crib and settled down to sleep, grateful I am sure that no one woke her up to poke her or look in her ears.

We spoke with our doctor this morning and were told that as long as Phoebe's blood cultures come back negative (without any signs of infection), we will be going to Toronto tomorrow. Everything seems to still be on schedule to start the clinical trial and the doctors in Toronto are aware of this latest situation. The past 5 weeks have been some of the longest weeks of our lives; full of worry and anxiety, but also of hope. We have been clinging to the hope that we see in this clinical trial with everything we have, and we are so anxious to get started.

One mission accomplished ...

2011-08-25T20:59:00.000-07:00

Mission accomplished. Jon successfully picked up the box this morning, dropped it off at CHEO - the vials were filled with Phoebe's blood and as far as we know they were sent off to their destination in the States for further testing. As for Phoebe, she had a very busy day today. CHEO arranged for her to have her bone marrow aspiration and lumbar puncture with intrathecal chemo, which I know meant late night phone calls and emails between doctors in addition to reorganizing their already busy schedule and squeezing her in between procedures. We appreciate all of their hard and extra work. Both procedures went well. Her lumbar puncture showed that her central nervous system is free of Leukemia. This is important as when she was initially diagnosed, the disease was also there. Her bone marrow on the other hand, is full of Leukemia cells. Our doctor told us that 80% of the cells are blasts, or leukemia cells, leaving 20% healthy cells. This news, considering how long it has been since her relapse and the aggressive nature of her disease, was expected but still not easy to hear. However, the fact that she does have a significant amount of disease in her bone marrow means that she is eligible for the trial so in a strange and unfortunate way it is good news. The treatment and goal of remission is also still the same, regardless of the number of blast cells.

Now all of the obstacles that were within our control - making sure the box was picked up and that the blood got to its destination, having the bone marrow test done on time, and reorganizing schedules to make sure that other tests can be completed, have all been overcome. The one major obstacle that still remains is Phoebe's white blood cell count. Today it climbed to 43. It has to stay under 50 for her to remain eligible for the trial. She is having it tested again tomorrow morning and those results will be what Sick Kids bases her eligibility on. After tomorrow if it is below 50 it won't be tested again, she will be enrolled in the study and will start treatment on Monday. The hope is that the mild chemotherapy will continue to keep it under control - and that tomorrow we can start to look forward and to focus our hopes and energy on getting Phoebe back into remission.

Non-stop action

2011-08-24T21:38:00.000-07:00

As usual, I am amazed at how quickly things can change from one day to the next. The one remaining spot in the clinical trial at Sick Kids, for the treatment that could very possibly put Phoebe back into remission, has opened up. We are going back to Toronto. Phoebe has to have some more testing done to make sure that she is definitely eligible for the trial, but if all of that goes well, she will be starting treatment on Monday. Finally some good news.

Our doctor at Sick Kids, who will also be following Phoebe's progress while she is enrolled in the trial, in addition to being a brilliant doctor, is also a very special person. He shares our hope and our belief that there is a chance, although it may be small, that a cure can be found. Today when I spoke with him on the phone, he told me that he is a hopeful person, that he has to be in order to do what he does, but that he also realizes that right now the odds are very much stacked up against Phoebe. Does that mean that we shouldn't try? Definitely not - he agrees that Phoebe's journey and her fight, is far from being over.

When Phoebe was initially diagnosed, we were handed a "road map". This was her protocol and schedule of treatment, and over the course of treatment, everything on these sheets of paper, whether it was anti-nausea drugs, chemotherapy, or scheduled rest, was given. Today, because Phoebe relapsed so soon after her transplant - we are in somewhat uncharted territory. There is no road map and no real plan of action. We are hopefully starting this treatment, and this treatment will hopefully lead us to remission. It is agreed that this clinical trial is not meant to be curative therapy, only therapy that will lead us to a curative therapy. When I asked our doctor today what the next step is, he said - keep asking me that question and eventually I will give you the answer. He is looking at other clinical trials, speaking with the transplant physicians and I am imagining a wonderful plan beginning to take shape.

Tonight in our house, it was non-stop action. At 7 o'clock our doctor from Sick Kids phoned to tell me about some "twists" that had developed in Phoebe's case. He explained that Sick Kids wasn't able to accommodate Phoebe for a bone marrow test, something that is necessary for eligibility, until Tuesday - pushing her start date to Wednesday and perhaps later. Because Phoebe's white blood cell count has been climbing and was 26 yesterday, we both agreed that waiting that long was not really an option if it could be avoided. Thankfully he had an interesting plan of action to help to give Phoebe the best chance at getting this spot in the trial. He explained that Phoebe's blood and bone marrow can be taken at CHEO ... good, but then he explained that the "box" containing all of the vials that her blood must be put in to before it is sent off to Maryland and the National Cancer Institute (by 3 o'clock tomorrow afternoon), is at Sick Kids. This, we decided, is a bit of a problem. To make a long story short ... tonight, at 11 o'clock, plans have been made and Jon is booked on an early morning flight to Toronto (this thanks in part to our concerned oncologist at CHEO, who worried about his safety after hearing warnings of a very large and impending storm and convinced him not to drive). His mission is to pick up the "box", head back to the airport, board another flight and return to CHEO - all in time for Phoebe's precious blood to be taken, the vials to be filled and the blood and box to finally be couriered to Maryland to guarantee Phoebe the spot in the trial.

We are hoping that all of this hard work will pay off and that Phoebe's bone marrow and blood tests will allow her to start this treatment on Monday. We are happy to do our part to help to make this clinical trial a reality for Phoebe, and we are anxious to get onto a path that will hopefully lead us to remission.

Taking the long road

2011-08-22T20:08:00.000-07:00

We will know for certain on Wednesday, but as of today, there are no longer any spots left for Phoebe in the clinical trial. This decision was based on which patient was ready to start the earliest, and that unfortunately, isn't Phoebe. So now we do what we have become very good at. We wait. We will wait to hear more news on Wednesday, to discuss more options, and possibly wait for another clinical trial. We desperately want to start treatment, to have a better idea of what our next steps are and to help Phoebe. Many things - our sanity, Phoebe's health and our plans for the future are being held together by very, very thin and precarious threads. At times it feels like the happiness that we have come to know - the happiness that comes with being together at home as a family of four, may be snatched away at any moment.

And then there is Phoebe ... it would seem that no one has told her that the cancer is back. She is thriving, growing, laughing and smiling. She is even getting teeth. Two new teeth finally poked through yesterday. Her white cell count was 17 today, so it is on its way down again. In addition to this, today was our first clinic visit in over 3 weeks that Phoebe didn't receive any blood transfusions. She will probably need one tomorrow, but we were very happy to be sent home early from the clinic today. All of this being said, the fact that she has a raging, unpredictable and aggressive cancer inside of her is never far from our minds. We have no idea what it will do, how long it will stay hidden, or where it will go and that scares me to death.

And so we are taking the long road. There is a beautiful little town in Scotland, where my mother was born and where many of my family live today. It is called Rothesay and is on the Isle of Bute. To get there (and you should go) you can choose to take the short road from Glasgow to Wemyss Bay and then a large ferry that takes you directly in to town, or you can take the long road. The long road stretches along the shores of Loch Lomond, is full of curves and hills and it takes you to a tiny ferry that leads you to the edge of town. As a child I loved taking the long road. The winding road, the tiny ferry. It was wonderful. And although it took forever and often had its share of obstacles - mostly of the farming variety, it eventually led us to our chosen destination. I mention this because today when I was thinking about Phoebe's road to recovery and her many many obstacles, I simply thought - well, I guess we are taking the long road. Perhaps this trial isn't Phoebe's best chance for remission - perhaps waiting will bring us more options and better opportunities. We can only hope that eventually we will get there. And get there we will.

A long weekend

2011-08-19T16:59:00.000-07:00

The results of Phoebe's blood tests are in and they show that she does have the CD22 expression on her Leukemia cells, so she is eligible for the clinical trial. However, we are still waiting to see if she will actually be enrolled. What makes this situation complicated and unfortunate is that the one spot left in the trial, is needed by Phoebe and one other patient. The doctors are going to discuss both patients on Monday and make a decision about who will benefit most from the treatment. I am sure that many factors are involved in their decision making process, and I know that they will choose well. Because this is a phase 1 and experimental drug, only a handful of patients can be used - I guess they want to make sure that the treatment is effective before offering it to everyone. Knowing all of this doesn't make anything easier. Somewhere in the world, there are other parents hoping for the same thing that we are hoping for, praying for a child who is also very sick and, like Phoebe, in desperate need of this treatment. Nothing about this is easy.

Our doctor has told us that if Phoebe is not chosen for the trial, there are other options for treatment and although he hopes we won't need to discuss them, he has ideas and plans for next steps. There are a few other trials that can help Phoebe but they are not available right now. We don't know how long Phoebe can wait for treatment, and we are afraid of waiting too long. Today Phoebe's blood work showed that her white blood cell count is 20. This is good news, as it is the lowest it has been since she relapsed, but it is being controlled by chemotherapy, and we were reminded today that this drug is only a temporary solution as the cancer will eventually break through its barrier. I got the impression from our doctor today that things are not as she would have expected. She commented on how "surprised" all of the doctors are at how well Phoebe is doing despite all that is going on inside of her, and how her white blood cell count is still very much under control - more than 3 weeks after her relapse. Although we are happy that Phoebe's white cell count is lower, we are aware of how terribly fragile this situation is and are anxious to start the next phase of treatment. Whatever that may be.

This weekend will be the first in 3 weeks that we don't have any plans to visit CHEO for blood work and transfusions. Phoebe had a platelet and a red blood cell transfusion today. We will enjoy our time together at home, but we will also be anxiously awaiting Monday's news. It will be a long weekend.

Options ...

2011-08-18T08:46:00.000-07:00

Back from a quick trip to Toronto. Phoebe, Jon and I arrived at the clinic at Sick Kids yesterday morning for blood tests and a meeting with the doctor about the clinical trial. The blood tests are looking to see if Phoebe has a particular expression on her Leukemia cells, because it is this expression that the study drugs targets. We will have the results of the blood test on Friday, at which point we can continue with more testing and begin the process of making sure that Phoebe is ready for the trial. This will include more blood, bone marrow and spinal fluid tests, and tests of her heart, organs and eyes. This is to give the doctors a baseline, an idea of how well Phoebe is and also to further ensure that she is eligible for the trial.

The meeting yesterday was different. It was the first meeting since Phoebe's relapse that we left feeling hopeful. While we are very aware of how aggressive Phoebe's cancer is and how difficult it may be to treat and cure, we talked at length with this doctor about options. About trials and new drugs that are promising and on their way to Canada, things that can help Phoebe once she is in remission. Options. The trial that we are hoping she is eligible for he explained, has shown complete response in some patients. This means that after treatment with this particular drug, some patients were seen to be in remission. If Phoebe is eligible for this trial, it will be a first step towards further treatment, not a cure. If it works to get Phoebe successfully in to remission, that will open more doors for treatment options that will hopefully lead us to a cure.

Although the meeting was hopeful and the doctor we spoke with is optimistic, we are still left waiting. The earliest that Phoebe can be enrolled in the trial is next Monday. The dose of the chemotherapy she takes to keep the Leukemia under control was changed last week and as part of the study criteria, we need to wait 2 weeks from the last dose change. In addition to this, there is one single spot left in this particular trial, and that spot can be taken at any moment.

Right now it feels like we are in a race against time. A race that also has many, many road blocks and hills that we must climb in order to get to the finish line. Phoebe's white blood cell count has to remain under 50 in order to be eligible for the trial. It was 36 yesterday and we have eleven long days of waiting ahead of us. We are hoping that the results of the blood tests show that she is eligible but also that her white count continues to be controlled by the chemotherapy that she is taking. In the event that Phoebe is not eligible for the trial, we will sit down with our doctors to discuss further options, a different trial, or treatment for Phoebe, but for now we will focus on the task at hand. That is enjoying each day that we have with Phoebe, whether it be in the hospital or at home. Surrounding her with love, hope, strength and laughter.

Two visit Phoebe

2011-08-15T19:19:00.000-07:00

It would seem that behind the scenes, many wheels are turning and brilliant minds are working to help to find further treatment options for Phoebe. Today we had a much anticipated phone call from Sick Kids. The doctor I spoke to, among many other things, is working to bring new drugs and protocols to Canada for treatment of relapsed Leukemia and other cancers. Working to help people like Phoebe. He explained that there are a few clinical trials that he thinks Phoebe can benefit from if she meets all of the eligibility criteria, two are close to home in Toronto and one is in Atlanta. On first glance, she meets most if not all of the criteria, and further testing has to be done to ensure that she can in fact be enrolled. I was relieved to speak to another doctor from Sick Kids, who shares our belief in the fact that all is not lost. There is hope.

The news of Phoebe's relapse was devastating, perhaps worse than hearing the original diagnosis because we were also faced with the fact that the many, many months of toxic chemotherapy did nothing but temporarily keep the cancer at bay. Together, Jon and I decided to try whatever treatment options are available, as although they may be experimental, we think that even if we are faced with a small chance for success, someone has to be that small chance. Why not Phoebe? Were it not for our determined doctor from Sick Kids, who listened to our concerns, searched for further options, and believed that yes, it is worthwhile to try once again to fight Phoebe's cancer, I don't know where we would be.

I titled this blog post 'two visit Phoebe', after a comment made by another one of Phoebe's wonderful doctors. This doctor commented that with Phoebe, things are always changing. She would see her in the morning, only to discover a completely different Phoebe in the afternoon. I think this is also true of Phoebe's journey. What appears to be impossible one day proves very much the opposite the next. We will potentially be going to Toronto this week for testing to ensure that Phoebe meets all of the criteria for treatment and to hopefully begin the process of enrolling her in one of these clinical trials. As we have come to understand, anything is possible.

As for Phoebe, she is smiling, starting to "scooch" across the floor in search of toys, and eating. We have discovered that she eats much better when presented with real food that is rich in flavour - preferably garlic. Among her favourites are lasagna, pesto, pizza, humus and blueberry pie (as she is enjoying in the picture). Her visits to CHEO for blood work are still frequent, as are her platelet transfusions, and the cancer is never far from our minds. Needless to say, we are anxious to start this next part of her journey.

We are so very grateful to all of the people out in the world sending love, prayers, hope and strength to us and Phoebe. Thank-you.

One day at a time ...

2011-08-11T19:03:00.000-07:00

We learned earlier this week that the doctors from St. Jude's have no treatment options to offer Phoebe at this time. More devastating and difficult news. We were really hoping that these doctors would have something to offer Phoebe. An innovative and new treatment that would surely fix her. Despite this news, our doctor from Sick Kids is continuing his search. He is aware that Jon and I would like to try whatever is out there to give Phoebe another chance to rid her body of this terrible disease, so he is inquiring at different transplant centers both near and far from home. He and our doctor from CHEO both agree that treatment has to be novel and somewhat experimental because standard therapy was unsuccessful. They are thinking outside of the box, looking outside of the country, and if there is something out there, I am certain that they will find it.

Today we sat down with our oncologist from CHEO and finally got some more answers to some of our questions. She expects to have an answer about further treatment by Monday. If it is a clinical trial that is found, Phoebe will have to be considered eligible, and there may only be phase 1 trials available, mainly because of the lack of research in this area. Phase 1 trials are considered experimental, but we are hopeful that something different and experimental is what will ultimately help Phoebe.

Until then, we have another weekend visit to CHEO to have Phoebe's blood tested. She received another platelet transfusion today, and it now seems that her little body is unable to keep up as she is needing more and more transfusions. On the outside, she still looks great. She is full of smiles and laughter, and it breaks my heart to think about what is going on inside of her. Every day that we have together is a gift, and I realize as I never did before, just how precious time is.

There hasn't been a moment throughout this entire journey that we have stopped believing in Phoebe, and in the fact that she will be okay. Whenever I speak with my dad about Phoebe, no matter how small or insurmountable the challenge I am describing to him is, he almost always stops me and says "hold on, let me get my vision". I imagine him closing his eyes and then he says "... okay, there she is. Running for the school bus". There she is indeed, bright and shining Phoebe Rose.

"Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all" - Dale Carnegie

Happy birthday Phoebe!!

2011-08-08T20:37:00.000-07:00

Happy first birthday Phoebe Rose!

Today Phoebe went back to CHEO to have her blood tested. Her white cell count is now down to 20, and she only needed a platelet transfusion. She was given platelets from a single donor, which is rare to get as it takes one person multiple visits to donate enough for another. Even for a person as small as Phoebe. Something to think about, and something that once again, makes us so very grateful to everyone out there who donates blood and platelets regularly. The single donor platelets will hopefully last longer in her body, so Phoebe will not have to be seen again until Thursday.

The lovely folks at CHEO sang happy birthday to Phoebe today, which she really enjoyed. It is funny that we spent part of Phoebe's birthday at CHEO because it is here that she spent most of her first year. She learned to roll over and sit up by herself in Rm. 1 on 4 North. In room 14, she ate real food for the first time, learned to wave good-bye, to babble, and she said something that very closely resembled daddy. She made her first friends at CHEO, and in room 14 she had her first play date with an amazing and incredibly strong little guy, who undoubtedly taught her a thing or two about courage and strength.

Looking back on Phoebe's first year is very difficult for me to do without shedding some tears. Some of my tears are tears of sadness because of what my baby has missed out on and all that she has been through, but there are also tears of joy. Phoebe is here and she is amazing. We have an immense hurdle directly in front of us, but she is still here. We have yet to hear from the doctors at St. Jude's, but we are hoping to hear something soon. It is difficult to live each day without any knowledge of what is to come, and what are next steps are, but we are taking things one step at a time, and enjoying every minute that we spend together as a family.

Before I forget ... Phoebe wasn't a fan of her birthday cake, but we learned that she likes pickles and ketchup. She also liked watching her big sister open up all of her presents and she can't wait to play with them tomorrow. For now, she is sleeping peacefully, and dreaming of big days ahead.

A day on 4 North

2011-08-06T18:22:00.000-07:00

Another trip to CHEO's oncology ward, 4 north today. Our visits here are bittersweet as I had envisioned returning with Phoebe to visit once she was out of isolation and cancer free, not to have her blood tested as a result of relapse. The staff on 4 North are a wonderful, compassionate and very special group of people. They care so much. Love and support for the families that are there permeates the space. The children can feel it and it makes their journey to recovery that much easier. Phoebe was happy to see her nurse and doctor friends today, and despite the circumstances, the feeling was mutual. They shared in our sadness but also very much in our hope.

Phoebe's white blood count has now dropped to 23. It is gradually going down, which is good, but so are all of her other blood counts. She had another platelet transfusion today, as well as a transfusion of red blood cells. Our doctor said that the chemo she is taking can cause the counts to fall, but that the bone marrow might not have enough healthy cells to make platelets and red blood cells right now. Once again, we are very thankful for all of the people out there who donate blood. It truly is a life saving gift.

We are expecting to hear something from the doctors at St. Jude's on Monday, which is also Phoebe's first birthday. We do know that they have discussed Phoebe's case already, and are going to reconvene on Monday to make a decision about treatment. We are aware of the gravity of this situation, but are optimistic and hopeful that these wonderful scientists and doctors, together with the team from Sick Kids and CHEO, will come up with a plan of action for Phoebe. And what better day to hear good news than Phoebe's big day.

Believe

2011-08-03T19:33:00.000-07:00

Yesterday, Phoebe's blood work showed that her white cell count is 54, down slightly from Sunday and a step in the right direction, but still very high. She is taking a mild chemotherapy drug which appears to be working to help it from climbing any further, but is not designed to fight the Leukemia. Over the past few days we have struggled with many uncertainties. Wondering what our next steps would be, and if there are any options for treatment of Phoebe's cancer. We spoke with Phoebe's doctor from Sick Kids today and thankfully, we got some answers.

He explained that Phoebe's cancer is obviously very aggressive, as it has appeared again so soon after transplant. He basically told us that we have the option of taking one of two roads. One will involve keeping Phoebe comfortable, and giving her the most wonderful quality of life. The other road, and the one that we were more interested in discussing, involves experimental treatment and a temporary move to a ground breaking research hospital many, many miles away from home. Although treatment seemed to go well for Phoebe, the fact that her cancer has relapsed so soon proves that it was not successful, and our doctor thinks that more standard medicine, even if the option were available, will also fail her. He is referring Phoebe to St. Jude's hospital in Memphis, in the hopes of enrolling her in a clinical trial. It is a pilot study aimed at patients who have relapsed or who have not responded to traditional chemotherapy protocols and it may be a chance for Phoebe to finally rid her little body of this terrible cancer.

We are optimistic and hopeful, but also very grateful that there is another option for Phoebe. When we first embarked on the road to transplant we were told that if this were to happen, there was nothing that could be done. No treatments, however experimental they may be, were available. Now, just a few months later, we have another chance. There are many people hard at work behind the scenes working to find a cure for people like Phoebe, and to them we are very thankful.

The next few days and weeks still hold many uncertainties. Although Phoebe looks good and is still full of energy and smiles, not a minute passes by that I don't think about the cancer and what it might be doing to her body. We will be back at CHEO tomorrow to have her blood tested again, and are hoping for good results. She will have to be accepted by St. Jude's, and deemed a good candidate for this particular clinical trial. If (and when) she is accepted, we will once again pack our little family up, this time moving further away from home in the hopes of finding what will eventually help us to be home and together once again. As usual, we are following Phoebe's lead, and everything about her energy and her spirit tells us that she is not ready to give up fighting. The cancer may be aggressive, but it can never be as powerful and strong as Miss Phoebe Rose and all of those that love her.

Each night as I put Phoebe to bed, I whisper to her that tomorrow is a new day with many new possibilities, opportunities and chances for a miracle, and I believe this with all of my heart.

Phoebe

2011-08-01T09:18:00.000-07:00

Phoebe had her blood tested again yesterday, and the results are not what we were hoping for. Her white blood count has now climbed to 65 - this confirms that after only 2 short weeks at home, her cancer is back.

We have a lot of questions and not many answers right now. We know that because Phoebe has relapsed so soon after all of her chemotherapy and bone marrow transplant, that there are not many options for treatment of the disease. The doctors have prescribed a mild chemotherapy drug to help to bring her white count down to within or close to normal range. Allowing it to climb higher puts her at risk for stroke, and many many other complications. The hope is that once it is lower there may be more of a chance for the Graft Vs. Leukemia effect to help rid her body of cancer. Despite how small this chance may be, we are holding on to it with all that we have and praying for a miracle. The devastating thing is that, once again, Phoebe is fighting for her life.

In the meantime, we are following Phoebe's lead. To see her you would never think that she is really so sick, she is happy and joyful. She is Phoebe. We are so devastated by today's news, and it is hard to put in to words just how we feel, but we are taking things one day at a time and enjoying every moment that we have with our family. We have learned throughout all of this that time is precious, no matter what the future holds.

Phoebe will have her blood tested again on Tuesday, and we are hoping and praying for better news; that her white blood cell count has come down, and that she has signs of GVHD and therefore the Graft vs. Leukemia effect. Please send Phoebe love and strength and keep her in your prayers.

Hope

2011-07-28T22:18:00.000-07:00

Where to start ... today we had another visit to CHEO's medical day unit. These visits are becoming part of our routine; we get there early in the morning, have Phoebe's blood tested, talk to the doctors, and then we are off on our way back home to enjoy the day. Today, was unfortunately anything but routine. Phoebe had her blood tested, and the results showed some abnormalities. Her white blood cell count is 26 which is high and not a great sign. Our doctors are very concerned that it may be her cancer returning and are running more tests. They are also stopping the drug that suppresses her immune system, in the hopes that her new cells will fight off any left over bad ones.

We are scared and worried, but we are also very hopeful. We have hope and love in abundance and we believe with all that we are that Phoebe will be okay. There are elements of Phoebe's blood work that the doctors can't explain and that gives us even more hope. Phoebe's platelets and hemoglobin have also climbed, which is a great sign and not something that would be seen if her cancer had returned. She is also doing really well. She is thriving actually. Growing, babbling, saying new words, trying to crawl and eating. She is finally eating. She actually yells at us when the spoon holding the avocado is given too slowly. She is feisty and strong, and she will make it over this obstacle too.

Many times throughout this journey, Phoebe has defied the odds, proven her doctors wrong, and accomplished what some have thought to be impossible. This is no different. Like I told Phoebe's doctor today, although I recognize the severity of the situation, I know that everything will be okay. That somehow, someway, this is just another one of Phoebe's many hurdles on her road to complete recovery.

So, now we wait. Wait for more test results, for more blood work and for signs of Graft Versus Host Disease. Phoebe will have her blood tested again on Sunday and Tuesday, and the results of her previous tests should be available next week. In the meantime, I will continue to focus on wonderful and very brave Phoebe Rose, because I know that doing this will help me to climb this mountain with her. Seeing her smile, grow and thrive fills me with incredible hope and strength. And as usual, in her own way, Phoebe is reassuring me that everything will be okay.

UP

2011-07-26T14:29:00.000-07:00

Phoebe had another visit to the medical day unit at CHEO yesterday. She has two appointments per week to test her blood and make sure that everything is still on track. I am happy to report that her blood counts have jumped up a bit. Her white count is a whopping 5.9 - still low for the average person, but fabulous for Phoebe. Her hemoglobin climbed a few counts to 86 and her platelets jumped from 80 to 98. Go Phoebe go! It is so wonderful to see her counts moving in the right direction as whenever they drop, even if it is just a bit, we worry.

Phoebe is still making wonderful progress at home, and catching up on lost time. Today she learned to move from her tummy to a sitting position, and is even rocking back and forth a bit while she is on all fours. She looks almost ready to crawl and seems to get stronger everyday. Getting her to eat and drink is still a challenge and we think she will need her feeding tube for many more months. She is making progress but it is slow as in addition to getting used to eating again she is needing to develop new skills to help her to do this. She won't drink from a bottle anymore, so she is learning to drink from a cup. She really likes avocado and has started to get excited when she sees me start to cut one up for her. This is a wonderful sign as in the past she would cry whenever we would try to feed her.

Mae is still loving being back home and is great with Phoebe. She likes to help us put Phoebe to bed, and often stands beside her crib singing a very special rendition of "Twinkle, twinkle little star". There has been no talk of the "city house" since our homecoming, but whenever Jon or I leave to take Phoebe to CHEO, Mae makes sure to tell us "not to go far away".

There's no place like home ...

2011-07-21T21:09:00.000-07:00

Almost an entire week at home. We are settling in nicely, and enjoying this precious time together. Mae has been having a lot of fun in her new backyard, and Phoebe is making more progress as each day passes. She has now mastered going from sitting up to her tummy, and today she wiggled her way backwards on the carpet in search of her beloved soother. She has tasted various milkshake and smoothie concoctions, and although she will only take a few sips at at time, it is wonderful progress. Thicker liquids seems to be more comfortable for her to swallow, so we will continue to try and find things that she likes.

Phoebe is adjusting to the heat, thanks to a central air conditioning unit that was installed earlier this week. Her concerned Grandpa called in a favour in the middle of this very long and intense heat wave, and although i'm sure it is the busiest time of the year for those in the business of bringing people like us cool relief, our wonderful AC arrived and was installed within hours of the phone call for help. Once again, we were reminded that the world is full of some very, very lovely people.

We have had two visits to the medical day unit at CHEO. Each time we were quickly ushered into an isolation room, the door firmly closed, and Phoebe's blood was drawn and tested. Her counts have dropped a bit, which is always stressful, but we are hoping that it is related to the intrathecal chemo that she received last week and that her counts will start to climb up again soon. The doctors say that it is very rare and unlikely for chemo given in the spine to affect the peripheral blood, but Phoebe's counts have now dropped shortly after both rounds of intrathecal chemo that she has received post transplant. There is very little data about infant Leukemia, and not a lot is known about the effects of intrathecal chemo post transplant. So much so, that each hospital seems to do things differently. Phoebe will receive 6 lumbar punctures with chemotherapy post transplant, but other infants might have radiation instead, or more, less, or no lumbar punctures. Each case and each infant is very different, but it also seems to depend on the doctor who is making the decisions. In any case, we have learned that nothing is too rare or unlikely for Phoebe and so we are hoping that this is the cause of the drop in counts, or that it is simply what Phoebe's new bone marrow is doing right now. One of the chemotherapies that Phoebe receives in her spine, methotrexate, has always given us problems. She is very sensitive to it, and even in tiny doses it has given her mouth sores and nausea. She has one mouth sore that we can see right now and as for the drop in counts, I blame methotrexate.

We are returning to the clinic on Monday to test Phoebe's blood again, and we are hoping for more of the steadily climbing blood counts that we have been happily getting used to. As for Phoebe, the stress is not getting her down. Tonight after a short cat nap, she woke up with a big smile, ready to play. She happily munched on an arrowroot cookie, looking very proud of herself for doing so, and babbled and bopped until she was ready to settle down for the night. I like to think she was telling me not to worry.

She is now cool and comfortable and sleeping peacefully in her own little bed.

Welcome home Phoebe and Mae

2011-07-17T19:07:00.000-07:00

We are finally home. I don't know if I have ever been as excited about anything as I was about coming home. After stopping by Sick Kids to say good bye to the wonderful staff on 8B, we headed east. The 5 hour drive from Toronto felt like an eternity, driving down the 401 in the hot afternoon sun, Mae and Phoebe squashed into the backseat of our very small car, and Mae asking about every 10 minutes if we are there yet. We finally pulled into our driveway, which had a beautiful welcome home message written in chalk by Phoebe's cousins, and we were met by their smiling faces. The excitement proved to be contagious as it was giggles and smiles all around for the duration of the welcome. We had been telling Mae throughout the drive about a "special surprise" that would waiting for her at home. Now affectionately named "Mae and Phoebe's Park" - a play structure in the backyard was another source of smiles and enjoyment for Mae. She woke up bright and early this morning, and asked if she could go out to see the park in her backyard. So wonderful to be home.

After discovering the play structure, we ventured inside the house. Many people have been hard at work, getting our house ready for Phoebe's homecoming. Because Phoebe's immune system is still weak and will take many, many months to fully recover, our house has to be clean, dry and safe for her to come home to. We are so very thankful to everyone who helped to make this possible for us. Flowers were planted, the garden was weeded, the roof was fixed, floors and windows cleaned, trim and cupboards painted, everything dusted, organized, and sanitized. The house sparkled from top to bottom, and downstairs, our basement renovation was more wonderful than we could have ever imagined. A beautiful, dry and safe space for Phoebe and Mae to play in. Mae was so excited to be back in her house that she immediately went in search of her babies and her many stuffed toys. Thanking her cousin Olivia for looking after them while she was away, together and inseparable they both wrapped them in blankets and put them to bed throughout the house. Later in the evening Mae refused to go to bed before she checked on all of her various babies and stuffed animals to make sure that they were properly blanketed, fed, and settled for the night. Needless to say, she was pretty late getting to bed.

Phoebe was also happy to home, but took a little while to adjust to the heat. We don't have air conditioning and the house was a bit hot. Phoebe's Uncle whipped up some delicious and refreshing strawberry milkshakes, and to our surprise, Phoebe pulled the glass to her mouth and started to try to drink. Because she doesn't have very much experience drinking from a cup, this involved her dipping her tongue into the shake, and eager to drink some more, she started trying to bite the cup. Although Phoebe has been making progress eating solids, this is one of the first times that she didn't forcibly push the cup away from her face when we presented her with something to drink. We have tried pretty much every thing, except of course, a strawberry shake.

Today, with one day home under our belts, the smiles are still frequent and contagious. Tonight Phoebe experienced her very first thunder storm. We sat in the shelter of the porch and watched as the storm grew strength. She loved it and kicked her legs and squealed in delight at the sound of the thunder and the sensation of the cool, wet breeze on her face.

We are so happy to be home and look forward to experiencing many more firsts with Phoebe and Mae. And now that we know that Phoebe likes milkshakes, the possibilities are endless. Many nutritious and delicious foods can be whipped into a shake.

Two more sleeps ...

2011-07-14T20:47:00.000-07:00

Phoebe and I took another trip to the clinic today. She had her blood tested and the dressing on her PICC line changed. She cried a lot while she was in the hospital and was very happy to be back outside and heading home to her city house when the visit was over.

The results of her blood work looks great. Her platelets made another jump and are now a whopping 126, her hemoglobin also climbed a bit and is now 111. Her white blood count is still holding steady and is 4.6. It is such a relief to see her counts moving in the right direction.

In other Phoebe news, she has expanded her vocabulary to now include "Mama" and something that closely resembles "Mae". Upon hearing Phoebe say her name, Mae jumped around the room shouting Mae! Mae! Mae! and I think Phoebe may be afraid to say it again. She is making more progress with her eating, avocados are still a favourite, but she has also tried and enjoyed watermelon, canteloupe, and various baby type purees. She is yet to drink very much, if anything at all by mouth, but she will now let us put the cup to her mouth so I figure it is only a matter of time before she drinks from it. She has also had many more opportunities to practice tummy time and yesterday she rolled over! She has rolled in the past, she actually learned to roll over quite early, but after doing it a few times she was finished with it. During transplant, Phoebe's developmental milestones were basically put on hold. Worrying about whether or not she would crawl took a back seat to worrying about her health and survival. Apart from social interaction with her many new friends, she did not do anything new and some skills regressed. It is wonderful to now see her starting to catch up again and eager to try new things. It won't be long before she is running to catch up with her big sister.

One more clinic visit, a lumbar puncture and two more sleeps before we say good-bye to Sick Kids and the big city, and it can't come soon enough.

Four more sleeps

2011-07-12T12:42:00.000-07:00

I'm sitting with Phoebe at the day hospital at Sick Kids, watching her nap in her stroller. There is a crib in the room, but each time I try to put her in it, she cries. She also began to cry as soon as we reached the 8th floor and started to make our way to the clinic. Too many bad memories, and like her big sister Mae she seems afraid that her new life, the one with all of us together at home, might be snatched away from her.

Luckily for us, the doctors have agreed to let us head home on Saturday. Phoebe will have 2 more visits to Sick Kids, one on Thursday to test her blood, and again on Friday for her 2nd of 6 lumbar punctures with intrathecal chemo. Today her blood work looked great, her platelets have finally started to come up on their own and are 103 today, and her hemoglobin and white blood cell count are still holding strong.

Phoebe is loving her time at her temporary home. She loves watching her big sister, and she will often follow her with her eyes, craning her neck to look as Mae jumps and runs around the room. Since she has been home she has also made some progress in her eating. She will now eat some solid foods, her favourite being avocados and arrowroot cookies. She is still not really drinking anything at all, but we are encouraged by the progress she has made so far, and we know she can do it. It will just take some time, like everything else.

For now, we are enjoying our time at home together and we can't wait to pack up the car and head towards the 401 - back to Ottawa and all of the comforts of home. Four more sleeps.

Out Patient

2011-07-08T20:05:00.000-07:00

Phoebe has been at home with us in Toronto for the past 3 days and it is so wonderful. Following her first night at home we had a visit from community nursing, to assess Phoebe and care for her PICC line. Mae overheard me tell Jon that the nurses were coming, and she got very upset. In a panic, she told me that "Phoebe is all better, she doesn't have to go back to the hospital" and then, as she continued to become even more upset, she pleaded with us to "please don't bring Phoebe back to the hospital, she's all better". It broke my heart to see her so upset and worried, and I eventually convinced her that the nurses were visiting only because Phoebe wasn't going to be going to the hospital.

Mae is two and a half and incredibly resilient. We have picked up and moved her to a new city, her sister has been living apart from her for almost a year, and she has seen her parents together a handful of times in the past 9 months. Today I realized that despite how happy and joyful she is, all of this has had a real effect on her also. She was so scared and worried that the life that she had just gotten back, her life with her baby sister and both parents, was going to be taken away from her again.

Yesterday I took Phoebe to the out patient clinic at Sick Kids. She had her blood tested and her platelets climbed up a few counts so no transfusions were needed. It has now been 9 days without a blood transfusion which is a wonderful sign that Phoebe's new cells are continuing to work their magic. The out patient clinic, or the Sears Cancer Clinic, is a huge completely renovated clinic and is unlike anything I have ever seen. It reminded me of the waiting area at the airport. It is a huge and bright open space with tables and chairs, but unlike the airport it has toys, computers, flat screen TV's and many, many children with Cancer. Above the reception area there is a sign that directs children who are there for "express chemo", almost as if the children are figures on an assembly line, waiting to receive their chemo and have their blood tested. It is very efficient as the clinic will see approximately 120 kids a day, but also unbelievable. It is a different world, and one that I don't think many people are aware exists. When we were at CHEO it seemed that when one family was sent home, another child, newly diagnosed, occupied their room. Beautiful and incredibly brave children fighting terrible cancers while also just being kids. Laughing, playing hockey in the hallways, and riding tricyles around the ward.

In a perfect world, no child should have to spend years of their life in hospital, but as it would seem, the world is not perfect. Instead, I hope that a cause and a cure is found, that the number of children diagnosed with cancer each year begins to decrease and that more funds are directed to life saving pediatric and infant Cancer research. Seems like ambitious hopes but look how far we have come.

286 days later

2011-07-05T14:32:00.000-07:00

Phoebe's big city vacation starts today. She was discharged and will now be seen a few times a week at the day hospital at Sick Kids. Her platelets are 75 today, which is still low for the average person, but higher than the 50 that the doctors like to keep them above. She is holding on to her few platelets much better and requiring a transfusion about once every three days now. As for her other blood counts, her red blood cell count has been holding strong in and around 90 which is also low for the average person but great for Phoebe. No transfusions there either and the hope is that as her body starts to recover and heal, her blood counts will all climb up to within normal range. Because Phoebe is stable and not requiring daily transfusions, she is able to come home, or the next best thing; her temporary house in Toronto, as a final step before heading home to Ottawa.

The doctors are very cautious with Phoebe because she has had many complications, but also because her particular form of Leukemia is so very aggressive. They will monitor her for most of her life, and she will be watched especially closely for the next few years. During our transplant consultation we were told that once we pass the three year mark we are on safer ground, and when 5 years pass after diagnosis, Phoebe will be considered cured and cancer free.

I just returned from the pharmacy where I picked up a box full of drugs. Medications for nausea, reflux, blood clots, GVHD, and high blood pressure. Jon and I were taught how to administer these many medications, including Phoebe's two daily injections, and we have also learned how to take Phoebe's blood pressure. It is amazing what has become "normal" and what we have gotten used to. Nine months ago, I found it difficult to keep all of Phoebe's medications straight, and the thought of their side effects was incredibly overwhelming. Today we are just so happy to have our baby home and we are amazed at the thought of just how far she has come.

Phoebe has spent 286 days in hospital. She has had 3 central lines, and two PICC lines, countless NG tubes, blood transfusions, lumbar punctures, bone marrow aspirations, pokes and prods. She has had her blood pressure measured daily, sometimes 12 times a day. She has survived many life threatening complications and side effects from her life saving treatment. And through it all, she has grown, laughed, smiled, babbled, and met many very brave friends along the way. She has changed the way that I look at the world and taught me, among many, many other things to appreciate each day. We are aware that Phoebe's life may be different and that we are not technically out of the woods yet, but we are so relieved that she is here and we are amazed every day by how hard she has fought and how far she has come. And more than anything we are just so happy to have her back home with her big sister, where she belongs.

A day out and a first word

2011-07-02T21:00:00.000-07:00

Phoebe has now been in her little room on 8B at Sick Kids for 60 days. She has had a lot of interaction with her many different doctors and nurses, but for the most part it has been a very quiet 2 months. I have noticed that she has also been quieter than usual which I think is to be expected as despite all that we try to do to stimulate her and to make her environment interesting, it is a very small and very white room and Phoebe was very ill for many of the past 60 days.

We have a lot of catching up to do and what better way to start than with a day pass. Today Phoebe had a whole day in the big city with her big sister, Jon and I. Mae and I walked to Sick Kids just after lunch and found Phoebe there waiting for us with a big smile on her face. We got into the car, strapped Phoebe into her seat and her big smile got even bigger. I think she knew that it was going to be a good and different day. Mae and Phoebe held hands across the seat while we drove around and searched for a quiet park. It was a hot day today so we didn't stay very long outside. I think the heat was a bit much for Phoebe, she has been in an air conditioned room with fans blowing from every angle for the past 60 days. She was a bit fussy while we were outside, but calmed down once she got back in the car and the warm summer breeze started to blow in through the windows.

Later in the day we went back to what Mae calls the "city house" and Mae was so excited to show her baby sister her room and all of her toys and books. Phoebe was very excited to be with Mae and every time Mae went to give her a hug she smiled another one of her huge smiles. Then after dinner, Phoebe went back to the hospital with her daddy and as if the day wasn't perfect and wonderful enough, once they got back into Phoebe's little room, Phoebe said her first word. "Dada". And then she said it again and again ...

5 weeks to cake.

2011-06-29T17:34:00.000-07:00

Phoebe's feeding tube came out on Monday, and although it was out for 36 hours and Phoebe wasn't getting fed and probably feeling hungry, she still refused to eat on her own. She did make some progress with pureed foods, but when she was presented with the bottle, she would cry like she was being given one of her awful tasting medications, and therefore it closely resembled torture. There are a lot of factors that contribute to Phoebe not wanting to eat. There is the fact that she has been tube fed for the past 7 months, drinking little by herself most of the time. There are the medications that she must take by mouth, some of them tasting really disgusting, and there is the discomfort that she seems to feel while the feeding tube is in place. All things considered, I think that learning to eat again is going to one of Phoebe's biggest challenges. We were really hoping that without her feeding tube in, that hunger would take over and she would drink something. But, we have learned that if Phoebe doesn't want to do something, she won't.

We are going to focus on trying to get her to drink from a cup and to eat foods that she can pick up and feed herself. Developementally this is what she should be starting to do, and what we seem to have the most success with. Because of all of her mouth sores, intubation, and pain related to treatment - the bottle and most other things that approach Phoebe's mouth are met with complete refusal. She needs to learn to eat, but also to love food and all that it will do for her. Because she has been tube fed for so long, she doesn't understand that putting food in her mouth will help her belly to feel full and this is something that will take some time. But, time is what we have and however long it takes is okay.

In the meantime we are thinking about switching Phoebe to a G tube, instead of the NG tube that she presently has. The G tube goes directly in to the stomach, bypassing the nose and throat and we think that it will help to take away some of the hurdles that Phoebe faces on her path back to full feeds. Things like acid reflux and discomfort swallowing, or the simple fact that Phoebe constantly pulls her tube and is therefore often held down so that it can be re-inserted and taped to her face. Because nurses and Jon and I are constantly touching her face so that we can retape her tube, she has started to push hands away, even if they are touching her face in a gentle and loving way.

In one week, Phoebe will be 11 months old, and 8 and a half of these many months has been spent in hospital. This brought a tear to my eye last night as I thought again about all that she has been through in her short life. Then I thought about the very real possibility that Phoebe will be at home in time to celebrate her first birthday and therefore have her first taste of cake. Perhaps this will be what eventually convinces her to eat. Delicious and not so nutritious rich chocolate cake. After all that Phoebe has been through, she can eat as much cake as she wants and if it encourages her to try other foods, well then that is just even more wonderful. And if it turns out that she just wants to eat cake, well that might be okay too. I can bake brocoli and all kinds of nutritious things into cake so it's all good.

Phoebe's bootcamp

2011-06-27T20:58:00.000-07:00

On Saturday, a group of people joined forces at the Lebert Fitness Nation in Missisauga in honour of Phoebe Rose. The event was a charity bootcamp, organized by the wonderful Garry McLachlan and hosted by the owner of the Lebert Fitness Nation, Marc Lebert. Jon and Mae together with these wonderful folks worked up a sweat and kicked some serious butt on Phoebe's behalf.

I have often said throughout this journey that the kindness of friends and strangers has been abundant and wonderful. The love and positive energy that has been sent to us and Phoebe from old and new friends, both near and far has made the past 8 months of Phoebe's treatment that much easier. Knowing that many are thinking and praying for us and willing Phoebe to get better has given us strength at times when being strong has seemed impossible.

A big thank-you from Jon, Mae, Phoebe and I to Garry McLachlan and all of the hard working boot campers for thinking of us and helping to ease our journey. We look forward to telling Phoebe about all of you and this wonderful day when she is older.

Out and about

2011-06-27T06:42:00.000-07:00

Good news ... the results of Phoebe's skin biopsy are also negative for any signs of Leukemia. Thankfully, the odd bruises on her head appear to be just that, Phoebe's very unique way of bruising right now. We are happy to be back on the road again, and yesterday we sprung Phoebe out of the hospital and took her and Mae for a walk outside. As usual there was a lot of action in the big city, and we walked to Queens Park and around the grounds of the University of Toronto. There was some music and dancing in the park that Phoebe happily bopped her head along to and there were a lot of smiles. After the walk we sat in the shade and ate some watermelon, Phoebe munched on a cracker, and she saw her very first dog up close! He was on a break from his work at Sick Kids and came over to say hello.

On the walk outside we got a glimpse of what the next year will look like. Phoebe will be at home but the places she can go and the people she can see will be restricted - no public places or people who are sick because her immune system will still be rebuilding itself and it will be a year before she receives any of her immunizations. On our walk, we were careful to avoid crowds (which can be next to impossible on a busy Sunday in Toronto). But, because we have spent the past 8 months in hospital with Phoebe, any outside time is freeing and wonderful, and after spending the past 2 months in busy Toronto, avoiding crowds of people will be a welcomed and easy thing to do.

This morning in rounds we discussed the possibility of going home, making sure that the door to Phoebe's room was firmly closed. Maybe I am superstitious but the last 2 times home was mentioned, Phoebe decided she needed to meet more doctors. The doctors acknowledged that we need to be comfortable with the decision to go home and they asked us if we think there are any more steps that need to be taken towards recovery in order to make home a possibility. Phoebe is requiring platelet transfusions only about every 2nd day now which is encouraging but she is still eating very little if anything by mouth. Although she can go home with her feeding pump and tube, it would be nice to see her make some steps towards eating on her own. Her NG tube seems to irritate her throat and make swallowing uncomfortable so the plan right now is to pull the tube and see what Phoebe does. It is impossible to predict what will happen. Maybe Phoebe will continue to eat nothing by mouth despite her hunger or maybe (hopefully) she will surprise everyone and eat. My vote, because everything that has happened so far has been surprising, is with the latter. In either case, we will continue to take things one day at a time. Phoebe has made it very clear to us and her doctors that she likes to do things in her very special way, and I have a feeling that starting to eat again will be no different.

On the road again ...

2011-06-23T11:56:00.000-07:00

Rewind to the beginning of Phoebe's journey ... following her first month of treatment and the long wait for the results of her very first bone marrow aspiration. It was a crucial test because it would show whether or not Phoebe's cancer was in remission and if the chemotherapy was effective. I remember sleepless nights and fear. Just plain fear. Especially when the preliminary results were misleading. At the time, the doctors thought that Phoebe's Leukemia had changed type and more tests had to be done. As usual, Phoebe had her doctors questioning what exactly was going on.

It was late in the evening, back in December when our doctor finally came to see us. She gave us the good news and immediately following, Phoebe broke into fits of laughter. She laughed at the doctor, and she laughed at Jon and I. She laughed non-stop as if she could feel the tension in the room and knew we needed some comic relief. Relief is exactly what we felt, such a wonderful sense of relief.

Yesterday Phoebe had another bone marrow aspiration and a skin biopsy. She also had her PICC line re-inserted. Everything went well, the line is in, and the bone marrow and skin were sent for testing. The results of the skin biopsy will take a bit longer, but the preliminary results of Phoebe's bone marrow aspiration show that it is free and clear of any Leukemia. The doctors are also very happy with how Phoebe's blood work has been looking for the past 2 days that they have decided to test it just once a day. It is amazing how quickly things can change from one day to the next. We are so very relieved to hear the good news, but I think that the fear and the worry that we felt yesterday and at the beginning of this very long journey will always be there.

Today is a new day and the concern now is with some graft versus host disease that Phoebe is showing on her skin. This is to be expected because the drug that is used to prevent it was stopped on Sunday so that the graft was able to take over. They are planning to start it again today, but to keep her dose very low because it is important for Phoebe to have the very important graft versus Leukemia effect that comes with GVHD.

This morning, to celebrate another huge step taken towards recovery, Phoebe had a visit with her big sister Mae, and together they enjoyed some baby snacks. Mae loves Phoebe's snack foods, and Phoebe is learning. She watched Mae crunch on her crackers, and then quickly caught on and opened her mouth to try. There were a lot of smiles as we are all so happy that home is once again within our reach.

Every little thing gonna be all right ...

2011-06-21T12:53:00.000-07:00

Phoebe is scheduled for surgery tomorrow at 1pm, to have her PICC line reinserted and while she is sedated, the doctors are also going to do a bone marrow aspiration and skin biopsy. They are being very cautious and want to rule out anything that may be related to the disease, and we are anxious to close this chapter and to get back on to the path that will lead us all home.

The bruises on Phoebe's head are looking better, more like bruises than anything else and her blood counts also seem to be stabilizing. She hasn't needed platelets today and her red blood cell count is holding strong at 90.

Throughout this journey, in relation to some of Phoebe's issues, we have often heard the doctors say - I have never seen this before. Phoebe as we have learned, is truly one of a kind and how she has responded to many things proves just that. This is no different. Just Phoebe doing things her way, and moving at her own pace. She will not be rushed on her road to recovery.

We will be anxiously awaiting good news tomorrow following Phoebe's many tests. Please keep her in your thoughts and prayers and send some positive energy her way as she embarks on yet another big day. And join us in singing Phoebe's favourite song ... "...don't worry about a thing, 'cause every little thing gonna be all right ... "

Houdini

2011-06-20T07:41:00.000-07:00

We have had a busy weekend. Phoebe developed some odd looking elevated bruises on her scalp this week. There are many explanations for these bruises. She fell and bumped her head, which she did, she has very low platelets and so is at risk for bruising, also true, and then the one explanation that no one wants to hear is that it is related to the Leukemia. In very rare cases, Leukemia can manifest in the skin. Phoebe has never had this condition, but because our doctors always have Cancer on their minds, something like these bruises are taken very seriously. The plan is for Phoebe to be seen by the Dermatology team and they will decide if they need to biopsy one of the bruises and test it for Leukemia. What makes this situation frustrating is that opinions differ greatly from one doctor to another. On Friday, our doctors were watching the bruises, talking about how well Phoebe looks and contemplating a biopsy, on the weekend, although the bruises started to look better and Phoebe was still looking good, those doctors were sounding off alarm bells.

We are frightened, terrified actually, but still hoping for the best. Afterall there are many other reasonable explanations for this. And Phoebe looks good. She is smiling and laughing and on Sunday she learned how to go from sitting up to her tummy without falling.

To be on the safe side, our doctors have stopped Cyclosporine, the drug that prevents Graft-Versus-Host-Disease, they say that in case something is up and brewing in Phoebe's body, they want the graft to take over. They want Phoebe's new cells and her new immune system to fight hard against any left over Leukemia.

Just in case that wasn't enough action for one weekend, late on Sunday evening, just as Phoebe was settling down to sleep, I looked into her crib and noticed a very large pool of blood. Her PICC line was lying beside her on the sheets. She had somehow managed to pull it out. When she was in the ICU, the nurses used to call her Houdini and now she is living up to her nickname. We quickly applied pressure to the wound, and it eventually stopped bleeding. Thankfully I was awake and in the room when it happened because it could have been disasterous - an open wound and a baby with few platelets is not a good combination.

I have often joked that Phoebe wants to meet as many doctors from Sick Kids as possible. We have seen doctors from many different departments and she greets them all the same way, with a big smile and a bop of her head. We are preparing for another busy day, and I am hoping and praying for good news, and to be turning back onto a straighter and smoother road, with fewer doctors. The road to home.

Good news, lots of it.

2011-06-17T15:44:00.000-07:00

We have good news. Lots of it. Phoebe's lumbar puncture went well. She was awake and smiling soon after. A sample of her spinal fluid was removed and tested, and the results show that it is clear of any blast cells. Wonderful news because the central nervous system is one of the areas of concern for relapse. Phoebe will have 5 more lumbar punctures, about once a month for the next 5 months. She will be completely finished by Christmas. On to more good news ... a test was done recently to determine the percentage of donor cells that are active and working hard in Phoebe's body. This is a very important test because it is a measure of how successful the transplant process is, and also of how much if any of Phoebe's cells are left over. Because Phoebe's bone marrow was once found to be full of leukemia, the hope is for few to none of her own cells to be remaining. More than 95% of Phoebe's cells were found to be from her wonderful donor.

A few more big steps towards recovery.

Phoebe is doing well. We are still waiting for her to make platelets, and for her other blood counts to stabilize, but she is working hard. Today may be the first day since transplant that she won't need a platelet transfusion. It is after 6 pm and her platelets are holding strong at 63. They like to keep them above 50. Her liver is still slightly enlarged, but an ultrasound of it today showed nothing to be concerned about. An enlarged but well functioning liver. She is tolerating all of her tube feeds, and has taken a few spoonfuls of food by mouth. Yesterday she tried hummus and loved it. And her baby mum mums, she loves her baby mums.

She is smiling and making friends and today we took a trip upstairs to an outdoor patio for some warm and fresh Toronto air. Phoebe loved that too. We are still very much looking forward to going home, but as our doctor told us today; we are taking things one day at a time. We are still very early in the transplant process and are aware that although home is within our reach, we want to make sure that Phoebe will be going there to stay.