Max Mikulak was born on June 30, 2001. He was diagnosed with stage IV, high-risk neuroblastoma in October 2004. He whizzed through frontline treatment and by the following summer was effectively on the road back to a “normal” life – albeit with almost total hearing loss, a new immune system, and about 10lbs to gain back, all courtesy of Mr. Chemo.
Unfortunately, Max relapsed (as most high-risk NB patients do) in November 2006. Max fought bravely, entering a clinical trial in Vermont where he received nifurtimox in combination with other chemo agents. This combination diminished the disease until there was just one tiny spot still evident on his spine. But in February 2008 the beast came roaring back and we could never control it again, despite everything we tried. Max passed away on August 31, 2008 at 8:45pm in his mommy and daddy’s bed.
Max on the Web
Over the course of Max’s treatment, there were several web sites which were created which together, tell the full story of his and his parent’s battle against neuroblastoma.
Max’s Cancer blog was started soon after Max was diagnosed in 2004. It started it as a way to communicate with those that wished to follow Max’s treatment, and therefore serves as a running (still to this day) diary of the family’s continuing journey.
Mashed Potatoes for Breakfast was started when professional photographer Deb Schwedhelm asked if she could chronicle Max’s fight. Our goal with this project is to raise awareness and ultimately drive action to make sure that Max and other children like him win their fight and live to see adulthood.
Max’s Battle was our attempt to tell Max’s friends what was going on with him. It highlights the fun as well as the not-so-fun parts of his life. We stopped posting in Fall 2007 for some reason (we were busy at the time supposedly) but it still serves as a good reminder of what he did and how much fun he had in the summer of 2007.