A year in pictures ...

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

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%

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

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

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

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

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 ...

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

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

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

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

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

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

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

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

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

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

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 ...

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 ...

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

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 need 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 least expected. 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 have to. 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 Phoebe's doctor on Monday to discuss the 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 centimeters.  Go Phoebe go ...

Steps

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

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

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.