So we know what is going on now, but are not yet sure what it means for the long term. They have diagnosed Maddie with a seizure disorder called Infantile Spasms. It has a wide variety of prognoses and at this time we don’t feel we have enough info to hypothesize about hers. This is very serious and we will be beginning a treatment protocol for it immediately. It means that for now we are stopping her chemotherapy protocol.
The drug that we will be using to try to stop the seizures is Prednisone, a steroid. We have previously used this drug in her chemo protocol and it should provide an anti-leukemia effect at the same time as it hopefully stops the seizures. So she will not be as at risk of relapsing as if we just stopped giving her anything to fight leukemia. In fact, the dose of prednisone we are giving is higher than what we gave in induction (for you other cancer parents) so it should have a good anti-leukemia effect and make our lives really interesting. We will be at the hospital in Chapel Hill for a few more days until we think we are getting some control of the seizures. At this time, we are not sure if this new diagnosis is related to her leukemia or her chemotherapy, but it seems very unlikely that they are unrelated. This is not a common side effect of anything we have given her to treat her leukemia.
This is not the way I intended to share news of the end to Maddie’s chemo, but for right now we are just rolling with the punches. Please continue to pray for our amazing child.
Hug your children and thank God for their health.