“Your son will die without a bone marrow transplant.”
It was September 1998, when a doctor in Thailand told me that my 15 year old son Brandon would die without a bone marrow transplant. He had just been diagnosed with Aggressive Leukemia (AML and ALL) at the Bangkok Hospital.
There was no one at the hospital to guide us through the fear and pure panic I felt upon realizing that my son could indeed die from this disease. The survival rate was 30% and 0% without a bone marrow transplant. Back in 1998, Thailand did not have a bone marrow transplant facility, which it now has.
For a couple of months prior to Brandon’s diagnosis, high fevers would wake him up drenched in sweat and he was experiencing body pain that I mistakenly thought was either sports related or growing pains.
The doctors in Phuket guessed at several possible diagnoses; could it be a slipped disc from playing rugby? Malaria? Dengue fever? Cancer was not even considered and when the doctors suggested exploratory surgery, the day after I admitted Brandon due to his sudden weight loss of 10lbs and high fever, I knew we were in a truly dangerous situation. I did not agree to the surgery because Brandon's platelet count had plummeted to a dangerously low level and surgery would have killed him.
His symptoms worsened and he went into septic shock. Bacteria had infiltrated his bloodstream. His white blood cell count spiked to 250,000. The normal range is 5,000 to 10,000, which meant his body was waging a futile war against a mysterious infection.
In desperation, I called Children's Hospital in Denver from Phuket and spoke to a doctor who was on call and working in the cancer ward. From across the world, the kind doctor told us by phone that Brandon most likely had leukemia.
Within 5 minutes the doctor from Colorado had managed to diagnose Brandon based only on my description of what had been happening. Meanwhile, the doctors in Phuket, truly did not have a clue.
Almost immediately after the phone call, we flew Brandon up to Bangkok, where he was given a lumbar puncture - also called a spinal tap to remove cerebrospinal fluid (CSF) surrounding the brain and spinal cord to detect whether blood cancer cells were present confirming leukemia.
Shockingly, the doctor performed this excruciating procedure without any local anesthetic! Even worse, since the doctor could not get any fluid, he actually chipped some of Brandon’s bone to get a sample. Unbelievably cruel! In the US, spinal taps are always performed with the use of a local anesthetic to numb the area beforehand or in some cases, the patient is under complete anesthesia.
During the procedure, I was trying to convince myself that he didn't have leukemia, praying to the Universe that everything would be fine and that the tests results would prove that he had some other easily curable ailment.
Only a short time later, the results came back and our lives changed forever.
"Your son has AML and ALL," the doctor said definitively. "His chances of survival are zero, unless you can go back to the U.S. for treatment."
We were on a plane the next day, and it was the most stressful and scary flight imaginable. It is heartbreaking to know that so many children and adults in Thailand are presently dying from leukemia, without any chance of survival because their families cannot afford the high expense of the treatment. Brandon was extremely fortunate and on December 17, 1998, after weeks of total body radiation (3 days straight) and high dose chemotherapy, he was finally ready for a cord marrow transplant.
I can never thank the amazing team of doctors, nurses, financial aid counselors and everyone that we interacted with at Children's Hospital, enough for their compassion and total dedication toward helping children to survive an untold number of horrible diseases.
A few of the children that I bonded with over the course of practically living at Children's Hospital for a year, showed me courage that will forever inspire me. They had their legs and arms amputated; they had severe reactions to chemotherapy and radiation and endured pain that we could never imagine and yet they were so brave and made the best of the good days.
In the movies, it looks like a cord marrow transplant is over within one day. Yes, the actual procedure does look like a blood transfusion, but in order to get the marrow, every cancer cell in the patient's body must be killed off, which means good cells are also killed off in the process.
The treatment has changed radically since 1998, but it still really really sucks. Simply put. It took a year for Brandon's immune system to build back up to a safe level and I am beyond happy to tell you that he has been leukemia free now for over 25 years!
Following Brandon's transplant he was so weak that he could barely walk up a flight of stairs. The idea of riding 157 miles over 3 mountain passes was unimaginable. However, "where there is a will, there is a way" and Brandon was able to complete his first Courage Classic ride a few years after his transplant.
Brandon's dream was to one day work at Children’s Hospital in the center for cancer and blood disorders and his dream came true in 2009. He now has the privilege of helping other children overcome their cancers and hopefully a couple of mountain passes as well!
This year our Wheels of Justice team hopes to raise 1 million US dollars, bring our lifetime total to more than 7 million dollars since the team’s inception. EVERY DONATION counts no matter how small, so please donate any amount to my ride! Thank you!
