- Max has Stage 2b Neuroblastoma Cancer (Malignant tumor of the Adrenal Gland)
- Max also has an extremely rare Neurological autoimmune paraneoplastic syndrome called OMA (Opsoclonus Myoclonus Ataxia)
- 600 kids a year are diagnosed with NB (only 5-6 with OMA)
- OMA causes body jerks and abnormal eye movements, ataxia (tremors, shaky, low muscle tone, learning and behavior problems, and speech impairment.)
- OMA symptoms may return during illness, fever, stress, sedatives or anesthesia, tapering or discontinuation of immunotherapy, and after immunizations.
· Relapses of OMA are common and may be treated with additional rounds of chemotherapy, steroids, and blood product infusions.
· Checkout Max’s Beads of Courage – He collects beads for each procedure, appt, and poke he receives.
· Max has seen 42 different doctors or providers in 6 months
· Max had 106 Dr appointments at Children’s Hospital since Nov.
· 84 Speech/Physical/Occupational Therapy appts since Nov.
· He has 5 different therapists meeting with him weekly
· Has had 9 tests or procedures needing full anesthesia
· 14 overnight visits in the hospital/2 ER Visits since Nov.
· He can take up to 9 medications twice a day
· He will get monthly infusions through the port in his chest for 2-3 more years.
· Max is now eligible for a wish from Make-a-wish foundation.
This brings tears to my eyes. The statistics are terrible regarding this horrible illness. I wish they had already found a cure for that. I wish max the best of the health and luck. He seems wonderful.
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