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Welcome to our team page!! It has become our passion to help other children, like our son Michael, fight Childhood Cancer! Last year (and only our 2nd year raising money for Childhood Cancer Research), Team Mikey Mike more than DOUBLED our fundraising goal from our previous year! Our goal this year is to DOUBLE it again!! Did you know that $50.00 covers 1 hour of research??!! Every dollar counts! Please help us reach our goal and support finding a cure for Childhood Cancer!
Today Michael is suffering from the long term affects of Chemotherapy. After many batteries of tests, we have learned that Michael has several visual and auditory processing issues. Along with short term memory retention. This is causing many problems for Michael in school. He is struggling with every aspect of learning. What comes very easily for most children, Michael has a constant daily struggle. Getting him into an earlier remission could have prevented all of these long term issues. This is another reason for Team Mikey Mike. If we can fund research to get children into remission earlier, they will have less issues in life after cancer!!
The end of treatment is never the end of dealing with a child who has been through cancer. It is usually just the beginning of life long struggles and mysteries.
Our Story:
Michael was diagnosed with Stage 1 Neuroblastoma and Opsoclonus Myoclonus Syndrome (OMS) at 2 1/2 years old in April 2005. Michael underwent treatment for 5 Years to get his OMS into remission. Every time the doctors would try to take him off chemotherapy Michael would relapse again. We went through 4 relapses and 5 years of treatment before Michael was finally able to get off of ALL treatment!!!!
Opsoclons Myoclonus is a rare auto-immune disorder also known as "dancing eyes dancing feet", or "Kinsbourne Syndrome". Opsoclonus is the jerking of the eyes, in which both eyes involuntarily dart back and forth. Myoclonus is the jerking of the muscles and being extremely off balance (ataxic).
Myoclonus occurs most when movement is attempted, and worsens with agitation or stimulation, but may also be present at rest. The child may appear tremulous or have gross jerking. Face, eyelids, limbs, fingers, head, and trunk are all involved. During the peak of the illness, sitting or standing is difficult or impossible. The child will also have trouble speaking, eating, or sleeping, and exhibit drooling, rage attacks, head tilt, or other abnormalities. Children appear to be nervous, irritable or lethargic (Dr. Michael Pranzitelli, National Pediatric Myoclonus Center).
What I just described above is the exact hell we went through with our son! Michael went from being a normal, healthy, active, happy 2 1/2 year old to being equal to a four month old in four weeks time. He woke up one morning and was shaking and walking into walls like he was drunk. We took him to the ER and they told us it was just a virus give it two weeks and it would go away. Well, it DID NOT go away, it got continuously worse each day.
In just a few short weeks Michael could no longer sit, stand, walk, talk, eat on his own, hold a sippy cup, play, or crawl. He could also not sleep for more than 30-45 minutes at a time and while he was awake he had horrific rages. His rages would last anywhere from a half an hour to 5 hours long. Hitting, kicking, screaming, crying, biting, scratching. And NOTHING would soothe him. He shook like he had Parkinson's Disease constantly and his eyes never stopped moving back and forth in his head. And the worst part is we, as parents, were completely helpless. No matter what we did or what we tried we could not make Michael feel better. It was such a horrible feeling to not be able to help your child. There is always some way to soothe your baby, but not one with OMS.
Michael went through 6 months of Cytoxin, IVIG, and steroids. He was finally getting better and the rages had, for the most part, subsided. He gained 6 lbs from the high doses or steroids that he had to take. Which, we were told, 6 lbs in a child is equal to an adult gaining 20 lbs. And was now on blood pressure medicine because of the steroids. He also had to be put on an adult sedative to help him sleep. We were almost to the end of treatment and the doctors told us it was mandatory for all children who were on chemotherapy to get a flu shot. We were hesitant, but trusted our doctors. Five days after the flu shot Michael went into a full relapse again! We spent the next 4 1/2 years trying to get him out of this relapse. He had to go through another 6 month round of Cytoxin, increased treatments of IVIG, and two different steroids before we could get his OMS into remission. We are proud to say that in October 2011 Michael will finally be in remission for two years!!
Michael is one of the strongest kids we know. One of the lessons God has taught us through Michael is that life is so precious. We cannot imagine having to live even one day without our boy!!
Liz and Jay Scott created ALSF, a wonderful foundation, in honor of the death of their daughter, Alex, and gave back to thousands of other children with Childhood Cancer to honor her short life. ALSF has funded many research grants for several different types of Childhood Cancers.
The National Cancer Federation gets $5,058 Billion a year for cancer research and ONLY 4% of that goes to Childhood Cancer Research! It costs, on average, $802 million in research and development to bring one new drug to market. Childhood Cancer only gets $197 million from the government annually. It is grossly underfunded! From 1948-2003 federal regulators approved 120 new therapies for cancer. Only 15 of these had pediatirc information on the labeling!!
Please join us in our walk or donate to help us raise awareness for Childhood Cancer in honor of our Mikey Mike!!! Help us to fight back for Michael
All our love,
MaryAnn, Brandon, Michael, and Matthew