Eli showed a lot of improvement today bli ayin hora. He wasn’t as weak as he’s been and he was a little more upbeat. After sitting in the waiting room at the DR for a few hours it was finally our turn. We discussed how Eli has been doing and our worries about his weakness and the DR after looking at him and giving him a basic physical wasn’t worried so BH to that.
The last 12 days and for the next while Eli has needed to be given a daily shot to boost some of his counts. He dreads getting it and I dread giving it but he has gotten used to it so its a little easier. The DR today informed us that part of immunotherapy Eli needs to begin taking Accuttane which generally is used for very bad skin but something in it is apparently good for cancer treatment. Being that this is a relatively new discovery we and the DRs have been fighting with the insurance to approve it which they as of now they haven’t. Based on Elis weight and age he needs a certain milligram that needs 2 pills to get there. The problem with this all is that Eli has been literally tortured with all these meds and treatments and the thought of him having to take this pill now which can make him very moody and dry out his skin twice a day and 2 pills each time is just rough and ridiculously expensive. Not much more to say then genuk shoyn or ad mosai but then again we are doing anything and everything to make sure Eli gets the best care so I guess we shouldn’t complain.
Whatever the case is please have Elimelech Ben Basya in mind that this new drug should not have any negative side effect and only gets us to the ultimate goal of a refua shelayma.