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Hi, I'm Jack's mom, Nancee. About one year ago, our son Jack, who was 17 at the time, started to experience weakness in his left hand. He is a pianist and was having difficulty playing the piano. That weakness began to spread to the entire left side of his body. This resulted in the inability to walk and use his left side altogether.
After his 18th birthday, and months of testing everything imaginable, he was diagnosed with a brain tumor. In April of 2021 a biopsy was done which confirmed he had a grade III high grade glioma (cancerous). A month later, as much of the tumor as could be removed, was removed. Afterwards, Jack underwent 6 weeks of radiation therapy along with chemotherapy. He was then accepted into a clinical trial with Primary Children's hospital, and we began that program after his first round of the chemo and radiation therapy.
Beginning in September, 2021 we noticed a decline in his abilities. His speech began to slur, he had a hard time focusing with his eyes and we had to move him to a wheelchair full time. We requested an MRI earlier than was scheduled, which was done in mid-October. Findings of the MRI confirmed our greatest fear, the tumor had grown back. At that point, Primary Children's informed us that there was nothing more they and their clinical trial could do for Jack. They recommended looking into other brain tumor specialty facilities.
This is a boy who is so full of life. He is talented, intelligent, fluent in mandarin Chinese, a gifted pianist, sensitive, adventurous, loves the outdoors, hiking, sports, enjoys time with his friends, loves his family, adores his niece and three nephews and is a friend to all. Jack has a great life to live, with much to accomplish and do.
We immediately looked into other options for Jack's healing. We began contacting Brain Tumor centers throughout the United States. All of these are promising options for Jack, which are not covered by insurance.
They include:
- Tumor DNA testing
- Introducing proper medication directly to the tumor site
- A third major brain surgery for Jack to partially remove the tumor
- A 5 to 6 week stay at the hospital to monitor Jack's recovery and toleration to the treatment plan
- Returning home with further treatment, medications and therapies, which could last months to years
As a result of the tumor, his current limitations will require:
- Physical and Occupational therapy four times per week
- A special wheelchair to help Jack up and down the stairs
- Home health care for Jack for a period of time, until he recovers
- Any other unknown or unanticipated costs for Jack's future care
These costs do not include travel and accommodations for current and future visits from Utah to facilities around the United States.
For those of you reading this, whether you know Jack or not, know what a special young man he is.
Thank you for taking the time to read his story and thank you for any donation you can give for this very important cause. We are grateful for the love and support we have been shown during this very difficult time.
Organizer
Nancee Arnovick
Organizer
Draper, UT