Jason Calhoun-3 brain surgeries

$760 of $10,000 goal

Raised by 11 people in 48 months


Some friends and family have seen our Jason go through this difficult time with the same helpless feeling us as his parents have felt. Some have suggested and asked if we would set this account up as a way they could help and show their support. With 3 brain surgeries in 4 years I'm sure you can imagine the medical bills and the mounting bills from the continued care Jason needs due to his latest complications. We are humbled by the out pouring of love and support we have felt and feel so blessed to have dear family and friends.
 Our Sweet 7 year old boy Jason is the youngest of our 4 boys. He was born with a rare brain tumor called a Hypothalamic Hamartoma. This type of tumor is deep within the brain and is known to cause cognitive regression and multiply seizures per day. In an attempt to stop our son from having multiple seizures per day Jason underwent his first open brain surgery in 2010 when he was 3 years old. This would be the first of 3 brain surgeries in 4 years. Unfortunately the doctors were unable to get all of the tumor and the seizures returned after being seizure free for two years. The seizures returned with a vengeance sometimes having up to 20 per day. This was starting to cause Jason to have long term brain damage and we knew we would have to do yet another surgery. In 2013 Jason had Gamma Knife radiation to the tumor. This seemed like a less evasive option, unfortunately it was also unsuccessful and the seizure once again returned causing more brain damage. It was then we were told by our amazing team of doctors, at Barrows Neurological Institute in Phoenix AZ where all his treatments are, about a new laser surgery where they could go in and burn the remaining tumor. We thought it was our only option as we saw what the seizures were doing and were told eventually we could lose our son cognitively if we did nothing. So in August of 2014 we had the Visualase surgery, but something went very wrong. At first the doctors thought this could be radiation necrosis however after reviewing the most recent scans the doctors have determined Jason has suffered permanent brain damage to the cable system in his brain from a thermal burn from the laser. He is the first case ever known to have these adverse effects and have MRI and MRA images that look like his. Jason is now partially paralyzed on his left his side. As for right now he is learning to walk and use his left hand again and goes to rehab every day Monday through Friday from 9 am to 3 pm.  He has become blind on his right side in both eyes due to surgery, which we were told is permanent also. But has been able to adapt to where you would never know it. With all this adversity our son faces he never complains. He is always "good" if you ask him and he is always smiling. He is a fighter and is one of the most positive people you will ever meet.

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After meeting with Dr. Janss we have received heartbreaking news that this is not radiation necrosis but a thermal burn from the surgery that has cause permanent brain damage to Jason. There is no medication that can help fix his brain or the weakness on his left side. We will continue with physical therapy to try and see if he can regain any strength and of course there are always miracles. So we aren't giving up. We will press forward like we always do and we have to try and stay positive. This is going to be a forever battle for Jason and there is a mourning processes I think as a mother you go through realizing your son's future has changed. But we also know it could be worse we still have him here. It is just very hard as a mother to watch your child struggle. Thank you for your love continued prayers and support.
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Jason has all of his scans done on Thursday. It took most of the morning and they scaned him for over 2 hours. Because he is high risk they intubated him and put him under general anasesia so he slept through the whole thing. Today our Doctor will meet with her colleagues to discuss his scans and figure out the next step. Shane and I will meet with her Thursday to find out the treatment plan. Thank for your continued prayers.
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We are so grateful for the love prayers and support we have felt. Today was supposed to be a big day of scans for us but it was put off until tomorrow because they want to intubate Jason under general anesthesia instead of just sedating him. We did get his X-Ray done to make sure his PICC line was sitting in the right place in his heart and it looks great! We will keep you updated tomorrow and let you know how he does.
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Heather Goff
48 months ago

Thank you for sharing your story Angie! I have been following Jason for a while but I was not exactly sure what his ailment was. You are in my prayers Angie. This parenting thing is NOT easy!! Continue to ask God for strength for your family. I will continue to pray for healing for Jason.

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$760 of $10,000 goal

Raised by 11 people in 48 months
Created November 3, 2014
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48 months ago
Heather Goff
48 months ago

Thank you for sharing your story Angie! I have been following Jason for a while but I was not exactly sure what his ailment was. You are in my prayers Angie. This parenting thing is NOT easy!! Continue to ask God for strength for your family. I will continue to pray for healing for Jason.

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