Shane's Story

Childs name: Shane

Website: carepages: friendsofshane
Diagnosis: ERMS, group 3/stage 3, bladder/prostate
Diagnosis date: 12/29/06
Childs age: 6.5 months
Treatment summary: 43 week VAC 7plus hour tumor resection 23 days proton radiation
Proton center: MGH
Oncologist: Dr. Chen
Number of treatments: 20 days, plus 3 "boost" days (partial/targeted dose); (~
Proton dates: 6/07 to 7/07
Insurance carriers: United Healthcare during treatment; Blue Cross PPO, post-treatment
Learn about treatment: Shane was treated at MGH & we were introduced to the concept of Protons and Dr. Chen from the proton center during Shane's first inpatient chemo 12/30/07.
Story: After learning of protons, completing treatment & meeting other families w/similar DX, we were surprised to learn proton radiation is not the standard of care for all bladder/prostate rhadbo cases (extremely small population: 1% of all rhabdo cases). We know of children who have received conventional radiation who have relapsed and/or have required physical therapy (neither required for Shane). We also know that many of the families (pedi cases) at the proton center found out about protons through their own research, NOT initially from their medical staff. We have thought of starting an initiative like yours, but instead of starting something new/separate, we would like to contribute to your foundation in any way we can. Locally, we have hosted families returning for follow-up appointments at the MGH center and plan to get involved in Christopher's Haven (an organization that provides housing/support while families are in Boston for proton therapy).