A summary of our experience at Children's Hospital Los Angeles
Second Brain Surgery
Alexander had his second brain surgery at CHLA to remove the remaining tumor and hematoma left from the first surgery at UCLA. Dr. Gordon McComb and his team skillfully conducted the second surgery and did a superb job. Alexander was left with no additional deficiencies or disabilities and recovered quickly from the operation. During Alexander's five-month ordeal with the medical profession, Dr. McComb was the only physician who demonstrated to us that he genuinely cared about our son. His manner with Alexander was gentle and warm and Alexander felt it too. Sometimes he would quietly sit on Dr. McComb's lap as the experienced neurosurgeon explained something to Raphaele or I. This man has a big heart and he is probably one of the best pediatric neurosurgeons in the U.S. if not the world. We will always be thankful and grateful to Dr. McComb and his team not only for their superlative surgical skills but also for their tender and affectionate care of our little boy.
Alexander's oncologist at CHLA was Dr. Douglas Hyder. During several long conversations, Hyder explained that radiation was a poor choice of post-surgical therapy. He explained to us that at two-years old, Alexander was much too young. Radiation would destroy his developing brain, leave him with severe neurological disabilities and reduce his IQ to around 60 which would mean retardation. But Hyder held out a life raft - chemo. Chemotherapy, he told us, was both effective and relatively safe. Much safer than either surgery or radiation. He told us that in respect to the toxicity, young children do extremely well on chemo. He said that he could give Alexander the latest "state-of-the-art" chemotherapy. He recommended a brand new protocol called CCG 9921(A) comprised of vincristine, cisplatin, cyclophosphamide (also called cytoxan) and VP16 (also called etoposide). He told us that without a doubt, chemo would prolong Alexander's life if it didn't save it. He told us that this was Alexander's best hope.
Yet, even with these encouraging promises we still hesitated. The idea of filling our son's body with poisons in order to make him healthy didn't make sense. We continued to pursue Burzynski's therapy. We found that there were several doctors who planned to use this non-toxic approach outside the USA, beyond the reach of the FDA, but they were not up and running yet. The clock was ticking for Alexander. Hyder began pressuring us to start the chemo. We began receiving faxes and phone calls from him that communicated his impatience with us. The following quotes are taken verbatim from Alexander's medical chart. Each entry is written by Hyder.
After more assurances from Hyder that his drugs would, at a minimum, "buy us time" we brought Alexander in for his first round of chemotherapy on October 7th, 1998. Alexander sat on his mommy's lap watching his favorite Barney video. The nurse came in the room covered with a protective "spacesuit" that covered her body with blue plastic from head to toe. She hooked up the bottles labeled "biohazard" to the IV pole and connected it to Alexander's port-a-cath that accessed a vein near his heart. Then she started the drip. We cried quietly as this bottle of poison emptied into our son's body.
Since before Alexander was even born, we had done everything we could to protect him. Raphaele ate healthy food throughout her pregnancy and bore Alexander without drugs or painkillers of any kind. She breast-fed him for four months and then made homemade baby food or bought organic baby food. His formula was made with bottled water. He rarely ate cookies, candy or ice cream. From day one, we made sure everything that entered Alexander's little body was pure, healthy and wholesome. For the first six months of his life, we had even made his grandparents wash their hands before they touched him. And now he lay in a hospital bed attached to an IV pole where liter bottles of poisons were being purposefully poured into his veins. To reassure ourselves, Raphaele and I repeated the words that Hyder had told us. "We're buying time." And to Alexander we said, "This is medicine that is going to help you."
What we didn't know and what we couldn't possibly know was that those words were delusions.
After the first round of chemo, Alexander began to change. Even after two brain operations, Alexander was still a vibrant, ruddy, strong, energetic child. But as the chemotherapy repeatedly filled his small body Alexander began to die inside. First the relentless stomach pains and the horrendous projectile vomiting began. Then his beautiful curly hair fell out. Next his dark skin tone turned pale as a ghost. He got sick with fevers and spent weeks in the hospital. Then there were the blood transfusions to replace the blood cells the chemo had killed, the hearing tests to see if the chemo drug cisplatin had not devastated too much of his hearing, the nuclear medicine tests to check if his kidneys were not giving up under the strain of processing so much poison, the liver function tests to ensure that his liver was not being destroyed, etc. During chemotherapy we had to squeeze an antibiotic into his nose called nystatin four times a day. He hated it and buried his face in a pillow when he saw it coming with all the strength his little body could muster. One of us had to pin Alexander down and keep his head immobile while the other pushed the syringe into each nostril and injected the solution. It was horrific. We felt as if we were actively engaged in the slow but sure torture of our own child.
Then we found the following statement written by Hyder in our son's medical chart. It was dated September 26, 1998:
And on October 6, 1998 Hyder continued:
We went to see an attorney to find out if the oncologists could take Alexander from us if we decided to stop chemo. Incredibly, the answer was yes. The lawyer explained that the court could take custody until a judge decided what to do. We weighed everything. If we said "no more chemo" to the oncologists we knew that we might get a visit from a police officer and a social worker. Alexander would be taken from us screaming. His last days alive could be spent out of our reach in some kind of foster care environment away from his home, his family, his toys, everything he knew and loved while an over-burdened legal system decided what to do with him. If we agreed to continue chemotherapy the horrific side effects would persist, but the oncologists assured us that the treatment would prolong Alexander's life if not save it. If we left the country, we would have our son but no blood tests, MRI's, or follow-up by the surgeons who operated on him. Those were our three choices, one worse than the next.
What do we do? We did not have a choice of therapies. Our first choice for treatment at Burzynski's Clinic was denied. Hyder and the other oncologists at CHLA warned us that if we didn't use chemotherapy that the tumor would probably return in three months. These doctors assured us that the chemo they were administering to our son was the current "state-of-the-art." They told us repeatedly that this was Alexander's best choice for a long and healthy life.
We continued the chemotherapy. Soon Alexander's balance was lost and his ability to see deteriorated. Then he began to lose his hearing. According to his medical chart:
"High frequency hearing loss in both ears." 11/17/98
When we took him home from the hospital, in between chemo rounds, we had to give him daily injections into his legs to help raise his blood counts that the chemotherapy had decimated. Alexander hated it. The whole thing was horrendous.
We never stopped looking for alternatives. After three sessions of chemo, we had found a clinic in Switzerland that had a good track record with pediatric cancers using a non-poisonous approach. Raphaele told Alexander: "No more chemo, Ninouche. It is finished! No more chemo or hospitals!" Alexander was thrilled. "Yeah mommy, no more chemo," he said. This was on December 7th, 1998.
But it was already too late. After a "clean" MRI on January 4th, Alexander had a spinal tap. A day later Alexander complained of pain in his head and back and he began to vomit. We asked for another MRI but Hyder refused because he had done one just a few days previously. Hyder told us that Alexander's pain was just a side effect of the spinal tap. But as each day passed the pain became worse. "Mommy I have pain here and here," Alexander repeated constantly putting his hand on his lower back and on his head. His suffering was increasing. We brought Alexander into the hospital on January 11th and Hyder ordered a CAT scan without contrast. We were told that the scan looked "fine," although later, we would find out that a CAT scan, especially one taken without contrast, is not designed to reveal the presence of a returning brain tumor. As Alexander's pain continued to increase, Hyder told us to give Alexander Tylenol and "Mountain Dew" - the soft drink because it had caffeine for his headache. Evidently, the young oncologist was still under the impression that Alexander's pain resulted from spinal tap but we knew something was wrong. Finally, on January 18th, we brought Alexander into the hospital and demanded a MRI. Hyder refused to order the test. He explained that it was too late in the day to schedule one. We had a confrontation. We would not leave until a MRI was ordered. Finally, Hyder relented. Alexander was wheeled into the MRI suite. We told him that he would sleep for a while and then when he woke up mommy and daddy would be there and we would go home. An hour later we had the news. It was surrealistic like the first time we were told our precious son has a brain tumor.
Hyder shook his head and told us that Alexander had over 30 tumors throughout his brain and spine.
"What does that mean?" we asked completely stunned.
Hyder just continued to shake his head.
We were ushered out of the MRI suite. Alexander was waking up slowly recovering from the powerful drug nembutal. He smiled because mommy and daddy were standing over him.
"Mommy, I have to throw-up," he said apologetically and threw up on the floor.
"It is OK Alexander, it is OK Ninouche, mommy loves you so much."
We were keeping back our tears to maintain our sanity in front of our 2 ½ year-old son. One of Alexander's neurosurgeons from Dr. McComb's team stopped in to look at the MRI and then came out to talk with us.
"What is it?"
we asked him.
"How is this possible?"
"It happens," he said.
"How often," we asked.
"It happens sometimes.
I'm sorry, I've got to get back to the OR."
The surgeon paused. "A few days, perhaps," he said.
We stood silently, holding Alexander's hands.
"I'm going to ask Hyder what we can do," I said to my wife.
Without asking permission, I returned to the MRI suite. Hyder was laughing with one of the nurses. Perhaps the laughter was to break the tension but it was so entirely inappropriate that when he saw me his demeanor suddenly changed and the nurse silently got off the table where she was sitting and left.
"The only thing we can do is send you home with hospice care. I'll give you a prescription for morphine and decadron," Hyder said as he awkwardly patted me on the shoulder. "I think it is better to keep your son here tonight and you can go home tomorrow," he added.
Alexander hung on for almost two more weeks. He wanted desperately to stay alive. He loved life. He loved his mommy and daddy and he wanted very much to stay with us and grow up and go fishing and do all the things we promised him that we would all do together. Alexander died on January 31, 1999. He was only 2 ½ years old.
After Alexander was buried, Raphaele and I wanted to know what happened. No one ever told us that the cancer could come back and kill Alexander while he was on chemotherapy. In fact, Alexander was only one quarter the way into a twelve-month chemo protocol (comprised of induction and maintenance chemotherapy). We used Medline the electronic medical index available on the internet to search for "leptomeningeal sarcoma" the cancer that had grown so rapidly and killed him. One of the abstracts that came back stunned us. It was a study published in 1994 by Dr. Heideman, the oncologist we had met at St. Judes. It discussed the "leptomeningeal progression" of medulloblastoma in thirteen children Alexander's age who were given chemotherapy. It explained how the cancers returned and spread in eleven of the thirteen children within five months. It mentioned that for some of the children the cancers grew in the spines. Incredibly, this abstract described in detail exactly what happened to our son. But even more astounding, the abstract explained that the protocol was terminated due to the poor performance of the drugs.
In other words, the chemo worked so poorly that the oncologists actually stopped the therapy. Unfortunately, the abstract did not name the chemo these children were given back in 1994.
be the same drugs Alexander got. Alexander got state-of-the-art chemo,"
I said to Raphaele in disbelief.
PLANS: We will proceed with chemotherapy like CCG-9921A, as the best available therapy.
How could this be the best therapy when these very same drugs required "early termination" when they were used before? How could the FDA deny Alexander access to another therapy when the best that orthodox medicine has to offer is an admitted failure?
This nauseating discovery launched Raphaele and I on quest to find the truth about chemo in pediatric brain tumors. Our research revealed that this one article was simply the tip of a gigantic and deadly iceberg. Please see "Chemotherapy in Pediatric Brain Tumors" if you're interested in what we uncovered.
© Raphaele and Michael Horwin, 1999 - 2002