Max Mikulak’s (too short) Life

Sun, 03 May 2009 05:11:21 -0400

Max Mikulak died August 31, 2008 at age 7 from neuroblastoma, a pediatric cancer. He had battled this beast for almost four of his short seven years here on earth and yet never lost his boyish love of Tony Hawk, Star Wars, WWII fighter planes, Legos… Hi. I’m Melissa Mikulak, mom to Max. I’d like to tell you what Max’s Ring of Fire is all about. Max was 3 ½ years old when he was diagnosed with stage 4, high-risk neuroblastoma – a very aggressive cancer of the sympathetic nervous system that quickly spreads to other organs including the bones. I remember him lying in the hospital bed shortly after we knew his diagnosis. His little body was frail, anemic, and he was in such pain that he was on a constant morphine drip. He couldn’t move and it hurt to be touched – which was awful for all of us because he’s a snuggler. He looked at me and said in a tiny voice, “Mommy, the doctors are never going to make me better.” He had a shock of blonde hair, long eyelashes framing his blue eyes, and already had a great sense of humor. His hair and eyelashes soon fell out following his first chemotherapy treatment, but his good spirit remained. He would tell the nurses, “leave me alone” when they came into his hospital room because he knew they were going to have to do something to him. It wasn’t long before he found that he could be in control - of the television and of how he was touched – and soon the nurses could do whatever they needed to do as long as they didn’t block his view and followed his particular instructions for certain procedures – which the nurses did with smiles on their faces. Max underwent the standard treatment protocol for his diagnosis which included 6 high-dose chemo treatments, radiation, and a stem cell transplant – all in six months. His treatment went off without a hitch and he was NED – no evidence of disease – shortly after he turned 4. One year later, right after his 5th birthday, a spot appeared on his follow-up scans. We soon found out that his cancer had come back. We also found out that even though 80% of kids who have had his diagnosis relapse – there was no treatment plan that was proven to make them well again. Just a number of ideas to choose from that would hopefully give us more time. With the guidance of Max’s oncologist and another cancer parent, we agreed to sign Max up for a phase I clinical trial based in Vermont. Max was only the second child on this trial and we believe it gave Max an additional one and a half great years of life. During relapse, Max received more than a dozen high-dose IV chemo treatments, 5 rounds of radiation on his spine, skull, legs, and liver, and took low-dose daily chemo for months – this in addition to the trial drug and numerous supplements. (Lance Armstrong can’t hold a candle to what our kids go through.) My husband, Andy, and I have learned through Max’s journey the deficit of treatment possibilities for children with cancer. Lab research and clinical trials for pediatric cancers are grossly underfunded across America. We learned that every 16 hours a child dies from neuroblastoma alone. Max’s Ring of Fire was borne of these realizations. Andy & I have learned that the best way to make a difference is to tell people about Max’s battle. Mother Theresa said, “If I think of the many, I’ll never act. If I think of the one, I will.” We hope that you will think of Max right now. Think of his beautiful blonde head and fun blue eyes. Think of Max teaching his three year old brother how to play Legos and dressing up like a super hero with his favorite blanket as a cape. Think of how much Max loves sharks and all of his friends in Mrs. Sturt’s 2nd grade class. Think of Max riding his scooter and doing taekwondo, and running in and out of the waves at the beach with his big sister. Think of Max lying in a hospital bed getting poked through his port so he can get his IV chemo. Think of Max laying in a hospital bed one week after chemo too tired to move waiting for a blood transfusion. Think of Max being fed through a button in his tummy everyday because the chemo he’s received has ruined his taste. Think of all the fun Max missed at school when was at the hospital for all his treatments and scans. Think of Max in heaven.

174721_058

Tue, 26 Jun 2007 22:01:20 -0400

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Mon, 01 Jun 2009 11:45:03 -0400

The fighting action of the Surtr Ring of Fire tourney at Ragnaroc VII 2009.

Correspondence

Fri, 01 Feb 2008 23:26:07 -0500

I got a letter in the mail and I made a video about it. Music: "Ring of Fire" by the one and only Johnny Cash.

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Wed, 20 May 2009 06:07:55 -0400

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Sat, 24 May 2008 11:04:24 -0400

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