Sunday (10/2) – We enjoyed an absolutely lovely lunch and afternoon at the home of 2 of the most precious people in Bloomington. Gene and Karla were the most gracious and wonderful hosts, feeding (and putting up with) our big and boisterous family at their lovely home. They have quickly become dear friends, and I can honestly say that I will miss them terribly when we head back to Minnesota.
Monday (10/3) – Big appointment day again. Speech Therapy, which wasn’t as hard today (yay!), then Physical Therapy and Occupational Therapy. His tremors have been a bit worse the past several days, and one of his therapists was mentioning that the chemo drugs can have some neuro side effects, which I had just been looking up on Google on my phone while waiting… Between the Posterior Fossa Syndrome’s ups & downs, and all of the many and varied side-effect of the treatments, this has and will continue to be quiet the roller-coastery ride. Up, and then down. Forward, and then back.
Tuesday (10/4) – Chemo @ Riley in Indianapolis in the morning, and Proton Therapy back in Bloomington in the early evening. Children’s Museum in between :).
This morning’s chemo is #4 of 6 for this cycle.
We got to meet “the frogkeeper” at the museum’s new exhibit, and watch him feed the dart poison frogs and the waxy monkey frogs. That was a fun time for our whole family of nature-loving homeschoolers!
Wednesday (10/5) – Finishing today’s Proton Therapy treatment meant finishing Week 4! (He started on a Thursday)
There is some slight concern today- while laying on the table for his treatment, the therapist noticed Ian was draining quite a bit of fluid from his ear. The big concern is that he could be leaking CSF (Cerebral Spinal Fluid), which would put him at risk of meningitis. Ian has been having some slight cold symptoms, such as a bit of a runny nose, for a few days. He also seems to have inherited my sinuses, and I periodically leak fluid from my ears, like tears, from my ears. Weird, I know, but the doctor was extremely relieved to hear that this new symptom, could be something as harmless as goofy sinus drainage, thanks to genetics. He didn’t take a sample, but will the second anything else seems even slightly off. For now, we’re watching him like a hawk, watching for any new symptoms, and any, even the slightest, sign of infection.
If it ends up being leaking CSF, Ian would likely end up in hospital at Riley in Indianapolis, in the hands of another neurosurgeon to repair the leak. This would mean stopping his treatment plan and taking a week or more off for yet another recovery from surgery. His doctor is doubly concerned because stopping his treatment early would increase the chance of the tumor growing back.
We’re definitely praying hard that this fluid is simple sinus drainage!
Thursday (10/6) – So far, so good today. His morning therapies wiped him out as usual :). He has had some ringing in his ears on and off again, which is another symptom that could be either from leaking CSF or from sinus issues. No signs of infection, no fever, chills, etc… So we’ll touch base with his doc again later today, and see what he thinks… Still hoping and praying that we’re only dealing with sinus stuff.
We haven’t noticed any obvious draining today, which brings us a definite sigh of relief! Still watching and waiting, still praying that he’s just got a simple sinus issue!
Friday (10/7) –
Saturday (10/8) –
I want to thank everyone again for your thought & prayers!
This very hard, very long journey has NOT been a lonely one. Your thoughtful comments, e-mails, cards, and letters have meant so much! This world, that can seem so big and cold at times, has become so small, cozy, warm, and friendly for us, and we’re so grateful.
Thanking Him, for all of you!
I’ll keep adding to this post throughout the week, check back for the latest update…