Here we go again… a 360 degree turn around…. my head is spinning as we got a call this afternoon that they want Jake admitted tomorrow to give his stem cells another go. It should be a quick over night stay… in and out. We also received word that Jake has been moved in the trial. There is another kiddo that is in greater need and Jake will now be third. Because of this, it will push back Jake’s GD2 infusion date – into the new year – so our Doc has been researching something, ANYTHING, to stall his disease. By the time Jake get’s his trial cells, he will have gone almost 6 months without effective treatment. The stem cells didn’t seem to do much the first go round in getting his platelets to trend up but we have to pray that they will graft this time, that they can get him to that 75K mark so he can do some kind of chemotherapy. Our Doc has been talking to Docs all over the country and the platelet issue has us stuck with any therapy, anywhere. They can’t attempt anything without his platelets increasing. In the meantime, until he can start the study and get his GD2 cells, they have proposed trying Accutane therapy, in hopes it might offer some suppression. This hasn’t been attempted with progressive refractory disease like Jake’s, it’s usually a frontline, end of therapy, treatment… meaning at the very end of Neuroblastoma treatment, when there is minimal residual disease, it’s used to improve the survival for children in remission. Both are shots in the dark but there it is… a little ray of hope. We’ll head into the BMT floor tomorrow morning where they’ll sedate him for another PICC line, give him fluids and pre-meds, infuse his stem cells and we’ll stay for observation. For some specific prayer requests, please pray over the chest monitors and pulse-ox, they send him
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