Another change to the plan today and the roller coaster continues ... Phoebe's doctor phoned to tell us that he had changed his mind. That after speaking with the head of BMT here at St.Jude, together they have decided against doing the DLI. He explained that because Phoebe is so soon from radiation, the t-cells could cause harm, as although she has no symptoms, she could still be recovering the effects.
He has decided to do the bone marrow test after all and so it is scheduled for tomorrow morning. Then, we will wait for the results, regroup and decide what is best to do.
We are in uncharted territory and to be honest, there is no right answer, no set path, no real plan. Phoebe's doctor told me today that he thinks that because this leukemia has already come back once after the transplant with my cells, he thinks that if Phoebe does not have more treatment it will likely come back again. He said that he has a lot of thinking to do in regards to what should come next. What is the right treatment?
We don't have many options. The NK trial that brought us here is not an option anymore because Phoebe does not have enough disease, despite the fact that it could be the best option for her. The trial at CHOP using modified T-cells is still considered as a good option if we are able to qualify. Phoebe was turned down by the doctors in Philadelphia prior to our arrival at St.Jude because her cells were ineligible, but there has been talk of trying again.
It is frustrating, with out a doubt, and overwhelming, but I can't help but be thankful to still have so many people putting their heads together and working to find a cure for my girl. I believe that all of these great minds together will come up with something brilliant.
Thank-you all for loving Phoebe and for keeping her close in your thoughts and prayers. Our appointments start bright and early tomorrow at 7am, and we should have the results of the bone marrow aspiration next week.