Reece’s Gorlin Goltz Syndrome Journey

Update posted by Sasha Goncalves On Mar 14, 2019

Update from Reece's mom:

Hi all. So after Reece's Dr's appointment yesterday we are just a little bit stumped. All three tumors came back as okc which we were expecting but the one came with alot of scar tissue aswell. Which means the tumors are not only growing in new place but also where they had previously grown. Which is very very rare. So now we have to come up with a new game plan. These tumors are extremely aggressive in Reece's case and are coming back every 4 months. And the a rapidly eating away his jaw bone. ( this is just one of the manifestations of gorlins) but seems to be the one that is affecting him the most at this stage. The specilists has said he will probably need surgery every 4-6 months. And if we leave any in it just eats his bone away. This can affect his sinus (he had a very large one removed there already) and it can go to his scull. That is a huge worry. It's getting harder for Reece to eat normally now because of the few teeth he has left and because his jaw is so thin.
So the dr is speaking to his prof about options. Best case for Reece will be a complete bionic jaw. ( yes it will be a long operation and recovery but then these tumors can not attack him any more.
Option 2 is a chemo drug called edveridge ( this is extremely potent and they use it for the skin cancers but there has been research that it can possibly slow down the tumors. This scars me. And it's extremely expensive. Option 3 is to have the operation every 4 months and put Reece through hell each time.
So we have a lot to think about.
In the mean time he has to start the biokenetic for his spine.
And then we see the dermatologist on Monday to finally address the skin cancers
During all of this he still has a mouth full of stiches but he is doing so well. He is truly so brave. I am so proud of how he is handling this all. Our road is still long and our mountain just seems to get a bit higher every time but soon we will be on top.
Thank you too all the amazing people and friends that have help us on our journey.
We still need you please as the bills are coming in hard and fast and he still needs so much treatment.

Reece is a fighter and one day he is going to make us all so darn proud


Love always,

Reece's Team

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Update posted by Sasha Goncalves On Mar 11, 2019

Hi all

Below is an update from Reece's mom:

"Reece is healing really well considering his whole mouth is full of stitches and titanium implants and bone grafts. We are still waiting on the biopsies results. This scares me. We see the Dr on Wednesday to get the results and to then get going on his skin cancers.

There have been a few things that have come up on his report that we are not sure about so we need to see the neuro surgeon about that. But Reece is truly amazing he is so darn strong. I am so proud of him. He had some friends over today and they played a while and swam. Reece is exhausted so he is going to snuggle up with mommy now.

He is still a bit swollen and sore. So mommy love is needed. This amazing child needs all the help he can get as we need to start extensive therapy this week.

To all that have donated to Reece you're all amazing and we appreciate it so very much. Reece is really going to work hard now to fix his spine (after his jaw has healed a bit).

We will keep you posted . Thank you all for walking this journey with us. Reece sends extra love.


Love always,

Reece's Team

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Update posted by Sasha Goncalves On Mar 06, 2019

Hi all


Reece went in yesterday for another operation.


The fees for the operation as well as CT scan, etc... have really added up so any donations will be a huge help.


Thank you so much to everyone who is helping and praying for us!


Love always,

Reece's Team

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