When a child is diagnosed with pediatric cancer, no matter what kind of cancer, time stops. Everything changes for the entire family. There is no “normal” anymore. My youngest son was diagnosed with Acute Lymphoblastic Leukemia (ALL) on June 20th, 2018. Anything happening before that date was “before,” and anything after, of course, is “after.”
Brendan was 20 years old at the time, and very independent. He was living in another state completely on his own. We had been chatting on the phone pretty regularly, and he told me that he hadn’t been feeling great. Apparently, he was tired all the time. I thought his fatigue was most likely the result of a little too much partying, but I held my tongue.
So, he went to a clinic for an examination. Based on a CBC (Complete Blood Count) test the doctor told him that he thought he had either lymphoma or leukemia and needed to get to the emergency room immediately. Brendan asked me to order an Uber for him because he didn’t have the money.
When he told me about this diagnosis I was furious. I thought, “How dare this clinic doctor make that kind of a diagnosis just from a blood test?” I was sure they would need to do further testing before they can tell a young man something so serious and potentially life-changing. Now I know better. A white blood cell count of 300,000 per microliter is way off the charts and can only point to some form of blood cancer.
I bought a one-way plane ticket to Minneapolis so I could be with my kid. That was the beginning of the year and a half of cancer treatment. Plan A, or the frontline treatment, was chemotherapy. Chemo cures leukemia for many patients, but unfortunately, that didn’t work for us.
Plan B was a state-of-the-art immunotherapy known as CAR T cell therapy. Brendan‘s T cells were harvested from his bloodstream using apheresis. The T cells were then sent to a pharmaceutical company to be modified. After about four weeks they were re-infused into his system and these super cells would attack all of the leukemia cells. This worked beautifully for a while. Thirty days post-infusion he was in complete remission and there was no trace of leukemia cells in his bone marrow or bloodstream. After sixty days there was an indication that this therapy was no longer working and he would move to Plan C which was a bone marrow, or stem cell, transplant.
In the summer of 2019 he received conditioning chemotherapy as well as full-body radiation to prepare his system for a stem cell transplant. The stem cells came from donated umbilical cords because there was not a 100% match in our family or on the bone marrow registry.
So, at this point we are one year post diagnosis and into intensive cancer treatment. The chemotherapy has completely wiped out any immunity that he had to disease. All of his vaccinations have been wiped out. He is greatly immuno-compromised and very susceptible to any illness. I remember driving to clinic one day and we were listening to the local news on the radio. There was a report of a measles outbreak in a county in Texas. He looked at me with a worried expression on his face and asked, “Is that close to us?” Luckily it wasn’t, but he also knew that this measles outbreak was caused by the growing movement of not vaccinating children against childhood diseases. If a person who has a compromised immune system should contract the measles, chickenpox, pertussis, or any other childhood illness, their body will have a much more difficult time fighting that illness then a healthy individual. It could potentially lead to sepsis, organ damage, and even death.
This is why childhood vaccinations and herd immunity are so incredibly important.
I’ve always been a pro-vaxx mom. When my oldest child was born in 1990 there was never any question about whether I would have him vaccinated or not. I never felt that I was blindly following with the pediatrician told me to do. I simply had a healthy respect for the opinions of medical professionals because of their education and experience. I had never even heard of the anti-vaxx movement until about the year 2010 when a coworker mentioned to me that vaccines had caused his son’s autism. I was puzzled since that was the first I’d ever heard of this phenomenon. I didn’t give that much more thought thinking he was just an outlier with that opinion. But as social media became more prevalent I realized that many people shared this opinion.
My son’s cancer diagnosis and subsequent treatment really brought this home for me. It helped me understand how harmful this anti-science movement can really be to many thousands of people in our country.
I wrote the book STUCK, which is a young adult (YA) novel, with the hope that the younger generation will help turn this movement around.
It’s about two best friends, Angie and Cassidy, who are busy enjoying their junior year of high school. Then, tragically, Angie is diagnosed with leukemia. Cassidy is by her side, determined to help her get through the treatment. But Cassidy’s mom has always been “crunchy” and she never had her daughter vaccinated. Cassidy gets the measles, and ends up passing it on to Angie. In her immunocompromised state, Angie is not able to fight the disease, and she perishes. Cassidy is devastated – she feels like she killed her best friend. Cassidy vows to never let something like this happen again, and finds a doctor who is willing to vaccinate her, even though it isn’t legal for him to do so. Chaos ensues.
You can find STUCK wherever books are sold. The following is the Amazon link: https://amz.run/3nai