Our first step will be to get a spinal MRI to be sure that it remains clear. This is very important when it comes to matching with a clinical trial that we are looking at. Next, we will immediately do targeted radiation to the two new tumors, carefully avoiding areas that have already had treatment. The team spoke at length about this process and they are confident the radiation will be safe and effective in slowing down progression of these new BTs. This will be the absolute final time that Parker will be allowed any type of radiation to his brain. 

This progression of disease tells us definitively that the BTs are “standard treatment resistant” and they have and likely will always find a way to grow despite efforts with chemotherapy. It is a very difficult fact to come to terms with. However, we are hoping with the expertise of Dr Allen, Dr Plant, Dr Mihalcik, and everyone on the team, that we will be able to find options to at least slow the growth of these tumors. 

Parker is so tired. We are heartbroken that once again he will have to put the radiation mask on. And try another drug or treatment. He’s done everything asked of him to beat this for nearly 1/3 of his life. And now it starts over again. He had a meeting with Dr Allen today and they discussed a couple ideas that are being looked into once radiation is done. Parker gathered his strength and agreed to take it one step at a time. His bravery and endurance is astounding. 

We will be doing our best to stay busy with family and friends, make plans and memories, and remain hopeful and faithful that doors will open for our guy. 

We will keep everyone updated over the next couple of weeks as we formulate a plan to keep new growth and progression at bay for as long as possible. And pray every moment for a treatment to come along that will stop it once and for all. 

Please PRAY  and GO GRAY in May 🩶

Love,

Ash