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Simon's Life-Celebration Fund

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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. It was hard on all of us (his big sister (7) and little brother (2) most of all), but Simon took it like a champ! 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, so shortly following radiation, his doctor wanted to do "maintenance" chemotherapy to keep away any cancer cells that may settle after radiation. Radiation was also hard, but it was easier than chemotherapy for sure! 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. His doctor agreed, it may not be worth it anyway. After a couple months, we went back for a rescan with our fingers crossed, but our expectations realistic. 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. After two hours in the oncology clinic, our care team came to the decision, there was nothing else to be done. More chemotherapy would ruin him and give him slim chances in the long-run, and radiation would cause irreparable brain necrosis and the chances of it curing the cancer itself was also slim to none. 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 and to ensure Simon and our family are happy and comfortable, but Simon's not done yet! We have many adventures planned for him and we want to make sure they're funded so we can stop worrying about money and start worrying about his quality of life. 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 give Simon the best last months of his entire life! Thank you!

Organizer

David Lindsey
Organizer
Joplin, MO

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