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, September 7, 2011

All you need is love ... and Kitkat

Today Phoebe is going to receive the fifth dose of the study drug.  Her white count has now climbed to 22 and we are hoping that this dose will bring it back down.  If not, we have some difficult decisions to make, and more difficult days ahead.  I think it may be safe to assume that if Phoebe's white count continues to climb, even after this dose, that the study drug has not worked.  The doctors have started her back on the mild chemotherapy that she was on before the study, to try to keep things under control in the event that the treatment isn't working.  Because the therapy uses an antibody to fight the cancer cells, there is a chance that Phoebe has developed a resistance to it, which might explain the initial success and the now climbing counts. 

We spoke with the doctor today about next steps and what we will do if the treatment is ineffective.  The option seems to be to try standard chemotherapy, but there are still many unknowns and no real plan in place to follow a remission.  It has only been 4 months since Phoebe's transplant and we are unsure whether a second transplant is a real possibility.  Phoebe will need to be in remission, which means that her bone marrow is free of Leukemia cells when viewed under a microscope, in order to have a second transplant.  So that remains the focus right now.  Standard chemotherapy has proven to be successful, it worked the first time to put Phoebe's cancer into remission so we are hopeful that it will do the same this time too. 

I think the reality of this situation, the severity of Phoebe's cancer, and the small but mighty chance that she has of survival are slowly sinking in.  Watching her white cell count climb over the past few days has made me realize now even more how aggressive her disease is.  Many thoughts have been floating around my head, and I often force myself to push them out and to focus on that small but mighty chance that we still have to fight and win this battle.  For now, our main focus as a family is to enjoy each day and to take things as they come.  This means multiple visits from Mae, lots of play time and dinners together in Phoebe's little room, and laughing ... as much as possible. 

The picture below is Phoebe discovering and very much enjoying one of life's most delicious treats ... chocolate - a KitKat to be precise. I know some people might think it crazy to feed a one year old a KitKat.  I don't think Mae had chocolate in a non cake form until she was at least 2, but Phoebe likes it and it makes her happy and so she can have it.  

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