JOPLIN, Mo. — Last week we shared a parade where literally hundreds of people turned out to share smiles with a little boy named Simon. Police cars, Fire Depts from all over. Motorcycles, hot rods, horses, Cosplay characters. It was an epic event for a little boy on palliative care from inoperable brain tumors.
Sadly later the evening of the parade he suffered a seizure. Went into a coma, and passed away a few days later.
Saturday evening, September 4, 7:30 p.m. at Schifferdecker Park will be a Celebration of Life for Simon. They have moved it to Sunday due to rain and to the Athletic complex for more room.
SIMON’S STORY … from GO FUND ME … During the fall of 2019, our little Simon (3 years old) was waking up intermittently with vomiting and headaches at night, and experiencing dizziness and poor balance during the day. We took him to the doctor several times and received misdiagnoses each time, until our doctor witnessed his dizziness at it’s worst. He ordered an MRI and located a large tumor growing on Simon’s pituitary gland in his brain. He was immediately life-flighted to Children’s Mercy Hospital in Kansas City, MO where the tumor was promptly removed. During recovery, we were told it was cancerous and that Simon was going to need 6 months of intense chemotherapy.
When he was done, life almost seemed to go back to normal. He was happy, hungry and healthy. But, slowly his symptoms started to return. We went back to KC for a rescan and his doctor gave us grim news. His tumor had come back, but with 5 others as well, including a dangerously large one at the base of his neck. We were told radiation was the best option here as it would shrink the high-risk tumors fast, but it wasn’t always guaranteed to keep them away.
Unfortunately after radiation, Simon’s little body was so beat that chemotherapy was too much for him. He was sleeping all day, barely eating and vomiting constantly. So we made the decision with his care team to stop the maintenance chemotherapy in favor of a good quality of life for Simon. And, unfortunately, his cancer returned, this time in the form of a large tumor in his cerebellum and two more on his spine at the base of his neck.
So, after many many tears and our journey almost at its end, we’re reaching out for help. Many people know our situation and the struggles we’ve gone through these past 2 years, and many have donated already to keep our heads afloat.
Planning funeral expenses is also highly stressful, and amidst grieving over a loved one on top of that. We hate to ask, but know if ever there were a time to, it’s now. Please consider donating and helping us, Thank you.
LIVE! PARADE FOR SIMON: A little boy with just a little wish, let’s have a parade… forget about tonight. Let’s have a parade, for Simon >> BIT.ly/2WxlL1n
**TRAGIC UPDATE** Mom & Dad update us on Friday morning. See the update in comments below or at the bit link. BIT.ly/2WxlL1n – – – – – LIVE! PARADE FOR SIMON: A little boy with just a little wish, let’s have a parade… forget about tonight. Let’s have a parade, for Simon >> BIT.ly/2WxlL1n (…+) Police from dozens of departments, fire departments from tens of locations, classic cars, motorcycles, cosplay, friends, street rods, horses… Hundreds turn out for little boy in palliative care for brain tumor. (…+) Read about Simon and his family in their blog posted on our news tab at FSHP, click BIT.ly/2WxlL1nPosted by Joplin News First on Thursday, August 26, 2021
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