Many of you may remember me, and I still post here from time to time.
I was here before, when my son Joseph was diagnosed in-utero with a cystic hygroma. Unfortunately he was stillborn at 30 weeks.
Now I'm back because my 6-year-old is moving into what I'd consider the special needs category. He has an aggressive form of cancer in his sinus cavity. He has had 3 (of 6) rounds of chemo so far and next week they will surgically remove the tumor. They are performing a maxillectomy, which means they are removing the left side of his palate, his left upper jaw bone and teeth, part of his eye orbit (bone) and possibly his cheek bone. He will have a (gaping) hole that goes from his mouth into his sinus cavity.
It it's place they will place a temporary prothesis called an obturator. This will cover his palate and allow him to speak and eat. We hope that it's an easy transition, but we hear it could be difficult. They've lined up speech therapists and a feeding therapist should we need either of them. In about 6 months, after he heals, they will make him a new one with teeth. He'll need new ones as he grows as well. When he's fully grown, they may be able to do reconstructive surgery. But we won't know until that time comes.
He's also going to radiation therapy (proton beam) at Mass General in Boston. (We live in Minnesota). He and Dad are going, while I stay home with the two younger boys. It will be quite an adjustment for all of us. They will be gone for about 2 months.
I know that we'll encounter difficulties that you ladies can help with/commiserate with, so I thought I'd update you on what's going on.