Just wanted to let everyone know why we haven't been home to answer the phone or anything else lately.
Connor had to start back on chemotherapy to try and get his OMS under control. Hoping the medicine has the least side effects but helps to control his symptoms. His poor eyes are just dark circles underneath and the doctor thinks it's from all the eye movement making it hard for him to see and then he just strains himself and gets worn down. He has an appt with an eye specialist soon, just to rule out cataracts or other problems due to the steroids.
I cut his speech therapy shedule back from Monday and Friday after school to just Tuesday afternoon once a week. Arranged to get him in there and to a secluded area away from all the kids so he doesn't catch their germs (hopefully)
So I guess we are on semi-lockdown now for the winter. Disinfecting wipes, face masks for Connor certain places, and lots of hand washing....pretty much what we do already just more intense and much more secluded for at least the next 6 months-a year.
Already feeling the effects of it, having to tell the kids we can't do things they want to do. Laurie wanted me to throw a Halloween party at my house, lol, not going to do that!
Connor is having a very rough time with the steroids still-much worse than its ever been. Pain and irritability don't really even begin to describe the hell he is enduring. As if dealing with the physical symptoms from the OMS weren't hard enough on him! The plan to get him completely weaned has not come together yet, hopefully tomorrow I will hear something back from the doctor.
He gets his 2nd dose of the Rituxan on Thursday and two more doses over the next two weeks. Hes not really going to school right now-its just too much for him. Maybe soon he can start back to half days...
Thanks for all the prayers and sorry for the long absence.
Before OMS Onset....
Connor was SO happy and interactive-then OMS struck at 15 months old and he changed overnight...