- - - Update February 2008 - - -
Roy was around fifteen months old when he learned to pull up and walk along tables. One day Roy sat down and didn't get back up. He would sit in my lap and put my hands on his head. Knowing something was wrong, I would pray for his health. I had just taken him to the doctor before he sat down. Over the next month, his motor skills started to decline. Grandparental instincts kicked in and Roy's Grandma came up with some physical therapy information that may have applied. I called the doctor and got Roy in that same day. The intern doctor checked Roy over. A strange look crossed her face when she looked in his eyes. She left the room to get Roy's pediatrician, Dr. Cyrus. He came in a little less jolly mood than usual, but still wearing his Santa hat. We took Roy out in the hall and Dr. Cyrus checked to see if Roy would take steps or crawl. He could do little of either. We went back to the room. He looked in Roy's eyes. A look of concern turned Dr. Cyrus' face very serious. He said many things, but I heard one very clear "We need to schedule Roy for and MRI to check his head for fluid or some sort of mass". I was in fight or flight mode. There was no air in the room. Roy's grandma was with me, she had tears in her eyes as she held Roy close. "I have to go," I said. We walked to the check out desk to make arrangements to schedule Roy for and MRI as soon as possible. I held Roy as we walked out of the office and into the bathroom. I handed him to Earlene and went into the bathroom stall. Tears streamed down my face as heart broke for my child.
It was Friday, December 15th when we left the doctors office. The MRI was scheduled for Monday, so the weekend was still ahead. I called the family and friends to inform them of what was coming and to have them all over to see Roy since there might be a chance of being at the hospital over Christmas. Little sleep came, but Monday finally did. Roy was wrapped in a warm blanket as the nurse gave him some sleepy time medicine. Roy gagged it down as he cried and then he puked it up as he cried. Since they couldn't give him any more medicine, another day would now have to pass before we knew what was going on with our son. That night in front of the fire, Roy laughed and smiled as he spoke with someone on the ceiling. He spoke with someone I couldn't see, but someone I could feel. The room seemed to glow, but not just from the firelight. Peace seemed to fill the room as Roy and I drifted off to sleep. Everything was going to be OK.
December 19th came. The slamming news that Roy was diagnosed with medulloblastoma, brain cancer. I ran to the nearest bathroom to get sick. Surgery needed to be done. December 22nd Roy had brain surgery to remove a tumor the size of a racquetball according to the surgeon. Christmas that year was spent watching my son's tiny body shake from the affects of a surgery that reverted my sixteen month old into a newborn infant. New Year was brought in with a surgery that opened Roy's tiny stomach to repair bleeding ulcers. As Roy healed he was moved to the Pediatric Intensive Unit to the regular floor. Roy then started the non-toxic cancer treatment given by the Burzynski Institute in Houston, Texas and it worked for him. According to the measurements from Saint Francis radiologists, the left over metastic spread of tumor disappeared
August 9th, 2001 came and Roy had his second birthday. September came and Roy had not been eating well since being taken off steroids. A rash started to form on Roy's feet from a lack of protein. It would take three days before his levels were they needed to be after receiving protein through IV. Wednesday September 26th, Roy was supposed to start in IV feedings since he would not eat. Roy's faint cry and labored breathing let me know that I had to get him to the doctor quicker than planned that day. I asked my sister if she could ride along with us. I headed toward Fire Station Number 3 at 131st and Elm in case anything more happened. Dick Morris answered the phone to a frantic voice on the other end letting him know there was a child having trouble breathing. Thinking the call was meant for Central Fire Station, he questioned further only to find out the child was about 10 seconds from him and had quit breathing. Dick called Life Flight and had everything ready when we arrived. After informing Roy had quit breathing by just saying my name, Dawn started to breath for Roy. I pulled Roy's limp body from the Suburban and ran to the ambulance where Dick and Johnny were waiting. I lay Roy on the cot. Dick quickly cut off Roy's Scooby Doo shirt and he and Johnny began working on Roy. We went across the street to be loaded on the helicopter. I was allowed to ride along.
I was led to a hall with Roy in a room in front of me and doctors and nurses all around him. All the sudden the curtains were pulled. A nurse came over to say Roy's heart had stopped. Roy's heart started again after what seemed an eternity. Roy was wheeled out to get a CT scan of his brain and would then be taken upstairs to Pediatric ICU. Roy came off the elevator and they wheeled him into PICU. A conference room was provided. The nurse came back with the news that Roy's heart had stopped again. Again she came back to say it started again. Going into his room I saw something I had never seen before. Roy was on a machine that was shaking him what seemed almost violent. The nurse was reassuring by explaining this was a different breathing machine. This was known as an oscillator, which mimicked the panting of a dog, which in turn puts less pressure on the lungs. Roy was so swollen and every place that had been a rash was now a large scab. His toe was purple and turning lack. They mentioned that his toe might have to come off if it got worse. Dr. Barton came in the room. Knowing Roy had been doing well, he was very disappointed to see him back. Dr. Barton had treated Roy many times now, but this time his face was different. I notice peoples' expressions and how they hold themselves and it tells me things. Dr. Barton is a very confident person, but I didn't see his confidence in this situation. "He has one percent chance of pulling through the night and that is anyone, not someone with his type of history," Dr. Barton explained. That night Roy's pupils started to react. Slowly, he started moving his feet and squeezing fingers. Over the next few weeks, Roy would be weaned from the oscillator to the ventilator and then to breathing on his own. His liver tests would go from showing a degree of damage that could be permanent to tests that continued to get better. His toe healed and every scab went away with hardly a mark.
I don't know how you define a miracle, but this is mine. I know my son would not be here had his body been put through the strain of traditional therapy and that was from the mouth of the pediatric oncologist who wanted to do traditional therapy on my son. I have thanked God many times for finding Dr. Burzynski perhaps by chance perhaps not. Roy is now 8 years old and in second grade. He now has a wonderful little sister Jamie that makes his days full of adventure. He is walking and running in a walker and will be able to walk soon according to doctors. I hope this brings some hope to you. God bless.
Oma, Roy and Jamie
- - - Update August 2004 - - -
Roy completed 8 months of treatment on the capsule form of Antineoplastons after having two completely clear M.R.I. scans. Roy's last 10 scans have shown no signs of the Tumors. He is a healthy growing young man who will be starting Kindergarten this fall.
- - - Update August 2003 - - -
Hey everybody! Roy turns 4 saturday, Talkin, Not yet
walkin, but he's almost there! He has now had 6 CLEAR
MRI'S Cancer free for over a year!
Thanks for all the support and prayers you have given us.
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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