re-introduction (s/b ment)

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CamelNoodle's picture
Joined: 07/28/04
Posts: 908
re-introduction (s/b ment)

Hi All!

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.


Joined: 05/05/04
Posts: 435

(((hugs))) I hope that things go smoothly for you. I wish I was closer to Boston to help out. We're maybe 5 or 6 hours away. They can still visit us if they need to get out of dodge for a weekend.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

I'm glad you joined us Janel. I've been following Will's story through caringbridge. We are all here as you go through this. Having gone through major surgeries with Eli it is hard especially the first one because they have no idea what to expect and wasn't able to fully prepare since I didn't know. I'm so glad you have therapies lined up now. It will greatly help. I'd type more but I have to get the Dakota to school and Faith has a well child check. :bigarmhug: and prayers always coming your way.

Joined: 11/28/06
Posts: 848

Hi Janel! I've been following Will's story too and I thank you for all the updates. He sounds like such a cool little guy. I've been praying for him from the moment I read about him and what he was going through. You are such a strong Momma and I look forward to talking with you more!!

carisathedreamer's picture
Joined: 12/18/09
Posts: 74

Hi! I just started posting over here recently, but I've also been following your little guy's story on caringbridge. You have all my thoughts and prayers and :bigarmhug: I live in MA, so if your husband needs some kid friendly activity ideas, I've got plenty. Also, I used to be a pre-k teacher and had a student who underwent chemo and surgery at Mass General and the Jimmy Fund Center - they are both excellent facilities with amazing doctors.
Please feel free to PM me if I can be of any help!

mujul79's picture
Joined: 01/22/05
Posts: 1843

I too have Will's CB app go right to my Droid. I hate to say welcome back because of why your back but it is nice to see you posting around, as I have been reading FB and CB I was wondering if you would pop in here too.

I may end up with questions for you too in all of this. I am just starting to face having a baby smaller then my baby with special needs and it is so hart braking to have to pick what one needs you to be with them more!!!

Hugs Will is a strong little guy I am sure he will keep showing you his strength in the next few weeks. I don't think he is the only Sept 04 little one with cancer. Have you heard about Gabe?