My good friends Shauna and Gage are staying at the Ronald McDonald House in Houston, TX for a few weeks so that Gage can get some treatment that is not available in the Seattle area. He has treatments every day Monday through Friday so they are only available on the weekends. After I dropped off Lily at school this morning I hit the interstate and headed to go get them and bring them back to San Antonio.
I have never been to the Ronald McDonald House so I was very curious about what it looks like and what goes on there. Here is the sign that is out on the streeet.
I love these little signs in the parking lot.
Once I got inside the lobby Gage and I waited for Shauna to go upstairs and grab their bags. While we waited Gage played me a song on the piano.
Then we hung out on the couch and talked about stuff.
As soon as I saw this statue I wanted our picture taken.
And of course I made Shauna get in the picture.
Let’s do a brief review and make sure everyone is up to speed and on the same page about what Gage is going through.
At 2 ½ years old, Gage was diagnosed (September 21, 2001) with a brain tumor. The tumor sits directly on the optic chiasm so it affected both of his eyes and consequently he lost his vision. It is a low-grade tumor that grows slowly and is considered “easy” to manage. Over the next several years he went through multiple courses of chemotherapy in order to preserve the little bit of vision he still had and to buy time before radiation treatment. Close to 4 years were spent on chemotherapy. In those 4 years he spent numerous days and weeks in isolation and had 2 blood transfusions due to low blood counts. He has been off treatment since July 2007. Gage was having MRI scans every 3 months and then progressed to every 6 months to monitor the tumor’s growth. In 2009 the tumor started showing miniscule signs of growth so we were back to quarterly scans. Over the course of the next 2 years there has been quite a bit of change in the tumor when 2009 scans are compared to current scans.
The tumor is growing and if left unchecked it is unknown what it will do to him. In the past 6-7 months his speech has become more difficult and that could be a result of the tumor. He is also having a problem with his saliva pooling in his mouth and that could also be a result of the tumor. There are a lot of unknowns right now. If allowed to grow it could affect his speech even more, undoubtedly the little bit of vision he still has, potentially the use of one side of his body or even his ability to walk. I list all of these possibilities because there is another patient at Seattle Children’s that has the same tumor and she can barely talk or walk now. The doctors can’t say what will happen – only what can happen.
The doctors have recommended a fairly new type of radiation treatment called proton and after researching this compared to photon (x ray) radiation treatment – it’s a no brainer that this is the best treatment for Gage. The side effects are way less severe and the long term effects are less severe than the photon radiation. One of the biggest side effects of brain radiation is on the IQ or cognitive skills. With the proton therapy there will be less damage than the photon therapy. My goal has always been for Gage to grow up to be independent, productive, and successful. He wants to grow up and get to be a husband and a daddy, too. So, as you can see – proton therapy really is the best choice for him.
Proton therapy won’t be available in Seattle for at least 2 more years and they wanted this to be started ASAP to minimize loss of any other abilities. The reputable pediatric proton centers are in Boston, MA or Houston, TX. The treatment length is 6 to 8 weeks, 5 days a week with a pre-assessment visit and a post-assessment visit. We’ve opted for Houston, TX but that will mean a leave of absence from my work, our families, and our homes. We are a dual income family and one income will be gone.
Here is what the proton radiation machine looks like when they put him in it.
And this is what Gage looks like up close as he goes in.
This is another picture Shauna shared with me from this week after Gage got his face painted.