"Warrior" Simon's Cancer Battle

For: Simon Fullmer
Organizer: Abby Jackson
"Warrior" Simon's Cancer Battle (Simon Fullmer)
$11,582
of $25,000 goal
46% Complete
Raised by 135 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 June 14, 2018

UpdateImage

Posted on June 14, 2018

Sorry for the break in updates!  I post more on the facebook and blog.

Simon completed rounds 2 and 3 of immunotherapy in February/March.  Then his eyes started to dilate and stayed that way.

So we took a 2 month break from treatment- which was scary but he did so well and obviously needed a break.
We continued with round 4 in May and are now inpatient for round 5.

We finish our final round of treatment today!  Crazy.

Then Simon rings the bell for end of treatment tomorrow.
His eyes are slowly getting better which is an amazing blessing/miracle.

Early in July we will have a week of tests and scans.  Then we will meet with the oncology team to go over everything and hopefully/prayerfully say -see ya every 3 months!  


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!

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