"Warrior" Simon's Cancer Battle

For: Simon Fullmer
Sandy, UT
Organizer: Abby Jackson
"Warrior" Simon's Cancer Battle (Simon Fullmer)
$11,572
of $25,000 goal
46% Complete
Raised by 134 donors

The Story

The battle begins! 

Simon woke up in January 2017 with some pain in his knees and had a hard time walking. Long story short, they thought it was arthritis but mothers intuition said otherwise. Simon has been diagnosed with Neuroblastoma. He has a tumor on the back of his liver about the size of a tennis ball. He starts chemo next week.

Simon's little sister, Meg, has a rare metabolic disease called Ornathine Transcarbamylase Deficiency. She is doing well, but her care is expensive and time consuming. 

Trisha and Caleb are doing as well as can be expected. They are both such amazing parents to these kids. Trisha has held a full time job for years while caring for her children. Caleb works part-time and has been studying chemical engineering at the University of Utah. 

We know the coming months are going to be stressful with two kids requiring specialized medical care. Both parents will no doubt have to miss a lot of work to be with their children.

Please help us lift the financial burden of Simon and Meg's care so that these amazing parents can focus on keeping their family afloat amidst this medical crisis.

Fundraiser Updates

Posted on January 24, 2018

UpdateImage

Posted on January 24, 2018

Days 1 & 2 of this stay have been rough and slightly amusing.
His anxiety has been very high with all the new stuff so we gave him a need to calm him.
He's been more peaceful this afternoon ( which means he'll be up all night like last night at 5am begging to play video games).
But things are going as expected. Which is safe but still not fun

Posted on January 18, 2018

UpdateImage

Posted on January 18, 2018

January 11th and 12th Simon had his CT Scan and MIBG scan.

January 13th Simon had his bone marrow aspiration.

January 17th Simon had his hearing screening and echo on his heart.

Everything has come back NED.  Still clear of cancer!

Let's start with some good news - if all goes as planned, with no setbacks - we have a last day of treatment! June 1st. It's going to be a rough road the next few months but we'll make it, like we always do 💪

Now the rough news: Part of this treatment for the next few months is a shot almost every day. It can be given at home with one specific home health company. We got this company approved on our insurance. HOWEVER the home health company will not take our insurance. We have a coordinator with our insurance who is amazing so she's still begging them to make it work.

Treatment starts this Friday, the 19th. We will need to go to the hospital for the shots in the meantime while we wait, and pray, for approval.

These shots are to prepare before , help during, and after the antibody.
3 days before, 5 days during, and 6 days after.

The 5 days during - we'll be inpatient. That starts on Monday. Back to the hospital for 5 days /4 nights we go!


Posted on December 15, 2017

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Posted on December 15, 2017

Things have been busy!  Simon came home from the hospital October 8, 2017.  It took a bit to recover but recover he has!  He has tons of energy right now, some brown fuzz coming in on his head.

He started radiation yesterday and did so well!  He'll do 12 rounds of radiation and then we'll do scans again after the New Year begins before he starts Immunotherapy.

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