Westyn Rinehart

Time is short for this bright 16yr old where he is nearing the end of his life. Could be days or even months.

When Westyn was 22 months old (2011) he was diagnosed with a brain tumor. It was very large and took up nearly the entire left side of his brain. He had 97% of the tumor removed. During the surgery he lost too much blood because the tumor was around the carotid artery. Because of this he suffered a stroke during the surgery and the carotid artery was clipped. After the surgery Westyn was amazing and eventually dismissed from physical and occupational therapy and back to a 100%. Fast forward one year and the tumor had grown back, so surgery again. Everything went really well and again dismissed from all therapy several months down the road. 9 months after the second surgery we were recommended to go forward with radiation therapy, because of the aggressiveness of the tumor. This lasted around 4 months. But shorty after treatment was finished, Westyn developed loss of movement on the right side of his body. This turned out to be radiation necrosis. From lack of blood flow there were good parts of brain that had been damaged surrounding the tumor bed. We then started an infusion treatment to help make new blood vessels. This helped some. He was able to regain a lot of movement. Allowing him to walk. He doesn’t have the use of his hand or foot but can move his arm some and his leg well enough to get around pretty good!

Over the next 6 years we’ve been doing routine MRI’s and managing residual issues caused from the necrosis. Such as learning disabilities, vision and hearing issues, muscle contractions, Precocious puberty from the amount of steroids he was required to be on. And many surgeries to keep him walking and moving. But through all those years there had been no tumor growth! In November of 2020 he had a routine MRI, the results came back with a new tumor. Not the same one. But a completely new one of the other side of his brain. The healthy side. And it’s in the exact spot of the first. Around the carotid artery. The only one he has left. The neurosurgeon we see has given us anything but hope. Westyn is having MRI’s every three months to try and figure out the rate of growth. Radiation is not an option as he received his life time dose at the age of 4. So the two options they have given us is surgery when it is larger or do nothing and just watch it. Both of these options give little hope. It’s an extremely dangerous surgery because of the area of the brain. If his carotid artery were damaged during surgery it would be devastating, and if they removed part of the tumor to stay away from the artery it will continue to grow. You can only do surgery so many times before your causing more harm. Second option is do nothing. And watch and manage symptoms until you can’t anymore.

Jump up to now, he’s 16 years old and his recent MRI shows a whole new tumor.. His Dr says that he shouldn’t even be alive with the large midline shift. (pictures have been posted of the newest tumor results)

His mom has had to leave her job to give him 24hr care and he can no longer go to school because he’s lost a lot of his speech and ability to eat on his own. There’s a lot she has to do and does get some in home help from nurses that come in to see him. Just weeks before his last MRI, Westyn lost his dad Zac in a very tragic accident. Zac was his biggest fan and supporter, especially when he was having to go in for the MRI’s. Westyn loved him so much and misses him daily!

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