On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Wednesday, November 30, 2011

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. 

Sunday, November 27, 2011

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.

Thursday, November 24, 2011

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.  

Tuesday, November 22, 2011

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.

Sunday, November 20, 2011

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. 

Friday, November 18, 2011

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.

Monday, November 14, 2011

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.

Saturday, November 12, 2011


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 ...

Tuesday, November 8, 2011


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.   

Friday, November 4, 2011

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.

Wednesday, November 2, 2011

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.