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.

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.

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