When Cameron was three years old, his mother’s instinct led to a diagnosis that no parent wishes to hear: leukemia. At first, Cameron responded well to treatment. However, two relapses were to follow, at which point he was enrolled in the clinical trial at Children’s Hospital of Philadelphia (CHOP). Today, Cameron is 6.5 years cancer free and happy to live a “normal” life!
In her own words, Cameron’s mother Debbie shares the story of her son’s diagnosis, relapses, and the journey to CAR T-cell therapy.
Cameron, his body ravaged by numerous infections and side effects culminating from his 6.5 years of chemotherapy and radiation, found his body weakened and unable to walk. His mobility issues left him restricted to a wheelchair. A somber meeting with our hospital’s palliative team soon after his second relapse left us facing a very grim reality.
Just how did this frail little 10 year-old boy go from a wheel chair to competing in a cross country run for his school JUST 3 months later? Kymriah CAR-T Immunotherapy – literally a life saver. There is no greater gift than the gift of life.
Cameron was three was he was initially diagnosed. Mother’s Day 2010 – instinct told me that something was not quite right. I would be shocked to discover days later that Cameron had B-Cell acute lymphoblastic leukemia (ALL) – form of blood cancer.
There is no possible way to prepare yourself to hear the words “I am sorry to tell you but your son has cancer of the blood”. Those words came from a complete stranger. This doctor was in our life for a total of 5 minutes. I had never seen her before. I have never seen her since. But those words completely changed the trajectory of our lives in an instant and introduced us to a life that no child, no parent should ever endure.
Time stopped, but time also became an expedited blur – which doesn’t make sense. But, your child having cancer doesn’t make sense.
We were told at the time that if your child has to have cancer, this is the one to have. B-Cell ALL has a 90% cure rate. Cameron responded quite well at every stage. We were confidant that we would put in our time and leave this horrible stage behind. Cameron would go on to enjoy childhood as it was meant to be enjoyed.
At the end of Cameron’s initial treatment, an article had popped up on my social media page about a little girl, Emily Whitehead, and this seemingly futuristic treatment for stubborn leukemia. The results had seemed unbelievable based on my experience of the disease but I was so happy to read that there were viable options being explored for those ‘extreme’ cases. I had shared this story on my social media and had exclaimed how incredible this procedure was for the future of leukemia treatments. Never, in my wildest dreams did I think this was going to be an option for my child. He was after all “cured”…..or so we had thought.
In retrospect, we were naïve to throw an “end of chemo” party to mark this special occasion with family and friends. We were so excited to return to a “normal” life with a “normal” schedule and “normal” family problems that people take for granted on a daily basis.
The thought of relapse was not at all on our radar. We did “our time” as if it was a prison sentence. In so many ways, it was. He knew his CBC’s before his ABC’s. He could do a heparin flush before he knew how to tie his shoes. We all were well acquainted with masks and hand sanitizer well before COVID-19 introduced those accessories to the mainstream.
Yet, it was a regular check up at an optometrist office that alerted us to a possible problem. Follow up with our oncology team introduced us to our new reality. Our son had relapsed. This time, it was different.
With Cameron’s initial diagnosis, ignorance was literally bliss. We blindly followed our team at Sick Kids Hospital in Toronto. They had been very methodic at telling us just enough to get us through the days without dwelling too much on the future during our first round of treatments but now, we knew what to expect. We knew this would be significantly more challenging but nothing could prepare us for what was about to come our way. We soon learned this was far more intensive than we could have imagined. It made the first 3.5 years seem like a walk in the park – something our son ironically could rarely do.
There was a moment I recall quite clearly when Cameron was particularly ill – he stumbled out of his hospital room washroom and looked at me and said in such a matter-of-fact tone “I don’t think I am meant to live”. He was 8 years old. I can’t imagine another child having that thought at the tender age of 8.
Hospital, IV alarms, endless waiting for appointments, hospital admissions, finger pokes, blood infections, spinal taps, daily chemo, radiation, constant nausea was a sharp contrast to the children outside playing in the park behind our house, riding their parks and playing with friends. His reality could not be further from the average child.
For a parent, it is barely fathomable that this is even a possibility. One of the worst days (and there were many), the hospital Code Blue team stood at the end of my son’s bed waiting for him to crash as his nurse worked feverishly to increase his blood pressure. There was a line up of specialists outside his room because the complications had become so expansive – they had to select the priority of doctors to see him: cardiology, infectious disease, surgeon, ophthalmology. The nurse had to prioritize which one could come in first. It was numbing but we were getting through it …… or so we thought.
It was the second relapse that left us devastated. While still in active treatment, Cameron would relapse for a second time. Wait? Relapsing while on chemotherapy? That can’t be good, right? This was the intensive chemo and radiation. How is that even possible? What was left in our oncology team’s bag of tricks? We no doubt would need a miracle. Hope was but a flicker.
Coincidentally, at the same time, the “memory” on my social media page had popped up with Emily’s story. I knew immediately there was hope. Cameron’s father dug deeper into the CAR-T option as well. The Whitehead’s story would be the lifeline for this sinking ship. There was hope. All we had to do was BELIEVE.
Our oncology lead at Sick Kids hospital in Toronto had been working with the team at CHOP and thankfully was very informed on this incredible ground breaking procedure. We were fortunate that the trial just opened up for those patients with CNS relapse (relapse in the spinal fluid vs bone marrow). Our team moved mountains in order to get Cameron in a state that he could even qualify for the trial – not an easy task based on his weakened state.
Cameron had received so much chemotherapy that he actually hadn’t produced a T-cell in months. His infections were numerous as his body was just worn down. All infections had to be cleared and his body had to produce viable and numerous T-cells that could be modified in a laboratory. Dr. Sarah Alexander turned out to be a magician as she was able to clear hurdle after hurdle to have Cameron’s body in a state to qualify for the trial but there was no guarantee that these cells could be modified.
The day the phone call came in to say we were approved for the trial at CHOP and the cells were modified was probably the best day of our lives. There was no bigger power ball jackpot than finding out your child had qualified for CAR-T. The optimistic elation was simply indescribable after years of heart ache.
Cameron’s infusion was 6.5 years ago. In that time, Kymriah Immunotherapy has received FDA and Health Canada approval. Hundreds, if not thousands, have followed in Emily’s amazing foot steps – Cameron being one of them. We are so grateful to Emily, Kari, Tom, Dr June, Dr. Grupp and Dr. Levine for turning a science fiction project into a viable reality.
Since his infusion, Cameron, now 16, enjoys life to the fullest. He has graduated elementary school, been on the Dean’s list at high school as he enters into Grade 11 this year, and enjoyed establishing his new “normal” life.
He is happy-go-lucky with this incredible sense of humour. Every smile – every laughter – every hug has been a gift that can never truly be expressed. Things most people take for granted with their children are cherished to a level that is inexplicable.
While we enjoy the daily gifts, we also take solace in the many fallen that will never have the opportunity for the extra giggle or missed hugs. As far as this treatment has come in the past 10 years, there is still so much to do. There are still too many young lives lost.
Thank you doesn’t adequately express our gratitude to the many donors, the many researchers and the teams behind these people that made this treatment possible. Super heroes don’t wear capes. They wear lab coats.
We receive messages from families around the world with experiences similar to Cameron’s family. We do whatever we can to be a resource for these families to help them get enrolled in a clinical trial or find an eligible CAR T-cell therapy treatment center.
To search for available CAR T immunotherapy clinical trials, visit our Pediatric Cancer Clinical Trial Finder. To help us in our mission to give children around the world the opportunity to Activate the Cure to their cancer, Get Involved or Donate now.