Rash, rash go away

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 ...

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

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

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 ...

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 ...

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

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

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.