Support for Josh's Boy Jase

Russell Bro.

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Hey Guys - I know it’s been a while since I’ve checked in. Jase is doing ok. He finished his “front line” treatment in March. During he end of treatment routine scans in early April they found disease in his skull in the location of his initial brain surgery. They also saw a large cyst in his brain which needed to be removed surgically. This was devastating news. We also learned that the cyst contained Neuroblastoma cells. High risk neuroblastoma is a bear, if it relapses it’s even thougher and if it gets into the central nervous system it’s extremely rare and even tougher. We made the decision to follow Memorial Sloan Ketterings protocol as we’ve learned they are the nueroblastoma experts and have treatment specific to Jase diagnosis. He had a course of chemo and immuno therapy shorty after thr cyct was removed and then went through 4 weeks of cranial spinal proton radiation in nyc back in may/June. He then had another intense cycle of chemo and immunotherapy followed by a port placed in his brain in June that would later receive liquid radiation. After two more cycles of chemo/immunotherapy over the summer he received his first of two doses of liquid radiation three weeks ago. The treatments have bounced between Boston and ny. My little country boy LOVES the big city and we generally enjoy our time there when he’s feeling well. He’s been asking to go to camp for two years and finally danielle and I worked up the courage to take him if his teams approved - which they did. We just had a great couple days in a place that means so much to us that we just haven’t been able to get to.
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Russell Bro.

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Hey Guys - I know it’s been a while since I’ve checked in. Jase is doing ok. He finished his “front line” treatment in March. During he end of treatment routine scans in early April they found disease in his skull in the location of his initial brain surgery. They also saw a large cyst in his brain which needed to be removed surgically. This was devastating news. We also learned that the cyst contained Neuroblastoma cells. High risk neuroblastoma is a bear, if it relapses it’s even thougher and if it gets into the central nervous system it’s extremely rare and even tougher. We made the decision to follow Memorial Sloan Ketterings protocol as we’ve learned they are the nueroblastoma experts and have treatment specific to Jase diagnosis. He had a course of chemo and immuno therapy shorty after thr cyct was removed and then went through 4 weeks of cranial spinal proton radiation in nyc back in may/June. He then had another intense cycle of chemo and immunotherapy followed by a port placed in his brain in June that would later receive liquid radiation. After two more cycles of chemo/immunotherapy over the summer he received his first of two doses of liquid radiation three weeks ago. The treatments have bounced between Boston and ny. My little country boy LOVES the big city and we generally enjoy our time there when he’s feeling well. He’s been asking to go to camp for two years and finally danielle and I worked up the courage to take him if his teams approved - which they did. We just had a great couple days in a place that means so much to us that we just haven’t been able to get to.
We head back to ny next week to get his second liquid radiation injection and then we’ll move to monthly immuno for 4-6 months.

he loves being a kid and we’ve been able to let him be a little more this year than last even given another intense treatment filled year.
As always we appreciate your thoughts and prayers. Best of luck this fall!

-Josh
 

mbVT

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Josh - Thanks for the update. I can't begin to imagine what this has been like for your family. All of you, Jase in particular, are in my thoughts. It warms my heart to see that you all made it to camp.
Please reach out if there's something we can do.
Matt
 

amclimber

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So good to see the pictures of Jase and read of his courage and tenacity. Sounds like such a great kid! Takes a lot of courage to be this guy's father also, Josh. Prayers for hope and perseverance for the whole family.
 

NH Hunter

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Thanks for taking the time to post an update. I'm glad your family could make a trip to camp. I hope this time next year it'll be a regular thing!!
 

shawn_in_MA

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Thanks for giving us an update Josh. Jase is an incredible boy. I can't imagine what you guys have all gone through as a family. The pics from camp certainly bring a smile to my face!
 

Browseline

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Josh, I appreciate all the updates you and your wife put on Facebook and here. Never more than a few days go by but what I am wondering how Jase is doing. He is an incredible young man and lucky to have you two for parents.
 

NoDeerHere

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Thoughts and prayers for Jase and family.

I don't want to detract from this thread but want to add my hunting buddy Dennis who is not a member here has a 5 year old grandson in Florida that has inoperable brain cancer. His name is Eli Paine and he just finished radiation treatment. He has a go fund me page too so if anyone can help I want to say thank you. My prayers are with Jase and Eli.
 




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