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.