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.