We took Adam into UCH yesterday morning to discuss the ‘plan’
The doc reminded us that Adam is in a very difficult place having become resistant to the Glivec and now the Dasatinib and that their plan is to try and get him back into remission in order to prevent the disease taking hold again.
His situation is severely hampered by the still exposed bone of his heel which means that the hardest hitting treatment can’t be used otherwise he will lose his immune system and likely get a secondary infection in his foot which would very quickly become life threatening.
‘Rock, hard place’, I hear you say…..
The initial plan is to use an antibody therapy called Rituximub that is normally used in cases of Non-Hodgkin’s lymphoma but has shown some reasonable results with ALL ph+ cases, this will be in conjunction with chemotherapy and was to be given yesterday then once a week for a month.
Adam had a significant reaction to the antibody infusion and it was stopped then the dose rate slowed down to the lowest, it was then determined that it would be best to simply run it at the slowest rate and keep him in overnight as this meant a 15hour treatment, then they would give the actual chemo then let him home assuming he is well.
So, at the time of penning this, he should be nearing the end of the antibody infusion and waiting for the chemo to be prepared.
Sitting watching your apparently otherwise healthy kid being pumped full of chemicals that are designed to kill bits of his body is an awesome thing and not one I’d recommend to anyone but for the time being there is at least some treatment to be had.
As days go, yesterday wasn’t a great one.
Love to all
Colin
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