Roy Hash

 My name is Glen Hash.  I am a firefighter for the city of Broken Arrow in Oklahoma, USA and a member of Local 2551.  I am writing to you on behalf of my two-year-old son, Roy.  Roy developed just like little boys do only his walking seemed to be coming very late.  He had started to pull up and walk along tables, but soon this stopped.  His motor skills declined over a one-month period.  His crawling became slower and he started to shake slightly.  We took him to the doctor knowing something was wrong, but never expecting what was about to hit us.  On December 19, 2000, my wife and I received the devastating news that Roy had a rare form of brain cancer known as medulloblastoma.  On December 22, 2000, Roy went in to surgery to have a tumor the size of a racquetball removed form his cerebellum.  This is the region of the brain that controls motor skills.  He came through the surgery great, but the trauma reverted him back to a newborn physically.

 Our next step was treatment for the two small remaining tumors that had metastasized off to the side.  Believing like many people do that chemotherapy and radiation may possible cure cancer, we thought this was the next step of the journey until we started to look at the children around us that were not being cured.  They even seemed to be sicker than when we first saw them.  Roy had some recovery time before starting any therapy.  We took this time to investigate our options.  We found out that with chemotherapy, Roy would more than likely be deaf, blind, and sterile.  He would require one or more bone marrow transplants since this treatment results in bone marrow suppression or leukemia.  This would be if he didn’t starve first since he only weighed twenty pounds when they got done with him.  Chemotherapy also results in organ toxicity due to the poisons being put into the body.  Roy was given 20% chance of survival over 5 years by the neurosurgeon.  Survival being defined as anything breathing.  The chemo oncologist eventually agreed with 20% or less over 5 years. 

During this time, we found out about antineoplaston treatment in Texas.  It was very controversial, but seemed to be very effective in brain tumor patients.  This was a possible cure.  We were ready to go only to find out the FDA would not allow it until standard treatment was given.  We contacted everyone, but to no avail.  Roy did his first dose of chemotherapy.  He is too young for radiation.  That was the worst night of our lives.  Roy screamed in so much pain, all night long.  His jaws were so sore he couldn’t drink his bottle the next day.  He ended up developing a staph infection and had to be taken off treatment.  This along with the blessing of God allowed us to join the treatment in Houston.  To everyone's surprise the FDA allowed Roy to join the clinical trial.  Most clinical trials are backed by pharmaceutical companies, but that’s not the case here.  The doctor who came up with the medicine is the backer.  The medicine is free, but the services are charged for.  The amount seemed like a lot, but was comparable to chemotherapy costs.  This is the part that makes me proud to be a firefighter.  Fundraisers were set up and raised enough money for two months worth of treatment as well as the one-month stay in Texas that is required on the first visit. 

Our insurance has decided since this is experimental they would recommend not paying for it, but they would allow us to appeal before city council.  City council now had to choose for Roy.  The city has decided to pay Roy’s claims based on ambiguity in the wording of the policy.  We shut down any active fundraising while the case was being decided by city council.  During that time our regular co-pays added up as well as attorney’s fees.  We are still responsible for our trips to Texas as well as what insurance will not pay.  This is very last minute and we would not ask unless it was needed greatly.  We know our decision is the right one.  A few days after getting to Texas, a 25-year patient reunion gathered.  We were invited and are decision was absolute when we met with children who had brain tumors the same as Roy was diagnosed with.  You would have never known anything had been wrong with them.  They were healthy and had no more tumors.  Roy is doing great now.  He has gained almost ten pounds since we started treatment.  He can sit up on his own.  He’s happy and playing again.  Our second MRI scan, since starting treatment, has shown 75% reduction so far.  Please help.  Every bit makes a difference.  Thank you from Roy and the Hash family. 

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