Learning to Be a ‘Patient’ Parent

As medical professionals in our own field, my wife and I figured we’d be prepared for anything our kids might encounter in life. And we had in the past. Smaller and bigger issues were recognized, contact was made with primary or specialty cares, we’d do our own research, and we’d reach out to friends and colleagues who could help us with the specific problem at hand. We were part of the medical system that we knew how to navigate. But when our youngest, Christian, was diagnosed with leukemia, we joined the army of parents who were or had been in the same situation: shell-shocked, confused, and full of fear.
The words of doctors and nurses washed off us like rain. They didn’t stick, and we couldn’t comprehend the magnitude of the situation. It seemed like we just moved along as if it were a hiccup
Life would just be briefly interrupted, and we might miss work for a couple of days while having to sleep in the hospital for a couple of nights. Oh, how wrong we were!
Christian’s diagnosis came out of nothing. He had been tired and fatigued for a week. Nothing more, nothing less. But after 5 days of him feeling this way, we felt he needed to be checked out. A visit to his primary care physician was set up, blood was drawn, an X-ray was taken, and we headed home, waiting for the news of a viral infection or something similar. This thought was crushed a couple of hours later when we received the call that changed his and our family’s life for good. It was not our primary care provider but a pediatrician on-call with the results.
And — as only done on the phone in highly critical situations — she broke the news directly: Christian had leukemia. In fact, his white blood cell count was 15 times higher than was needed to make this diagnosis. His blood was so thick, he might need dialysis. Otherwise, he would not survive.
Treatment for his leukemia was to start immediately. We rushed to the emergency room, and he was admitted to the pediatric intensive care unit instantly.
Looking back, everything we learned in our nursing and medical education on the ‘bad news conversation’ turned out to be true. There is no comprehension after the devastating and life-altering news has been dropped.
Once that word CANCER comes out, the brain shuts down. Whether it’s survival, panic, or shock, the rest of the message is useless.
The doctors and nurses tried to inform us of his condition, what the next hours, days, and months would bring, the immediate next steps to be taken, and what would happen after, but to no avail. We were still trying to process the diagnosis itself, and the rest of the words did not register. We had no clue what all of us — and him, most importantly — were up against.
And this is when Christian’s cancer journey began: 30-plus days in the hospital following diagnosis, a 3½-year protocol of countless chemotherapies and its accompanying slew of side effects, missed family events because of treatment or being immunocompromised, repeated hospital admissions for fevers, and in Christian’s case, severe cases of hypoglycemia and seizures
The train had started rolling and wouldn’t stop for over 3 years. We became part of a hospital family of nurses, providers, doctors, and fellow cancer warriors. And again — as we had done in previous cases — we found strength and privilege in the fact that we were part of this family already.
But being part of the medical community also gave us a chance to see the world from the other side. So many things that we learned along the way, things that we practiced on a daily basis, or worked on the research side, did not come across the way we thought was right. It started in the ICU. Instead of a place to rest and get better, the room seemed to have a revolving door for doctors, nurses, therapy staff, family, and friends intertwined with checks of vitals, medication administration, laundry and cleaning services, meals, and more visits. Twenty-four hours a day, 7 days a week
We lost track of time, forgot to take care of ourselves, and just rolled from one event into another. It was supposed to be a place of healing, but instead led me to ask an ICU doctor and friend: “I know this all might be important, but when is he supposed to truly get the rest he needs to strengthen and get better?”
Being on this journey also forced us to be patient. This is most clear from our experience in medical research and clinical trials. Three-and-a-half years is a long trajectory, and the more we learned about the poor state of pediatric childhood drug development, the more we felt we’d want to be part of the movement to improve this.
But no matter how fast we’d want this change to happen and get Christian the newest and best drug to get rid of his cancer, the more I also knew this takes time. While recent developments have opened the door for more funding for rarer diseases and cleared some of the difficult hurdles that always stopped pharmaceutical companies from starting an expensive (and hard to recoup) R&D pipeline, I also understood the research process is slow. Experiments to test new theories are detailed, prone to failure and repeats, hypotheses need testing, and the final presentation and publication of data (reviewed by expert colleagues) are all part of the slow march of research. And even when a possible new drug is identified, the clinical trials to make sure they work, are safe, and are non-toxic (yes, even for chemo therapies) are cumbersome, detailed, subjected to critical oversight, and thus time-consuming. And all for a good reason, because before you clear a new drug for wide, clinical use, you have to ensure the right boxes are ticked.
Nevertheless, learning these life lessons and living the patient life from a provider-perspective while on a journey fighting for our son’s life has inspired us to be ‘patient’ parents but also speak up and use our knowledge gained to change the system from within.
And for Christian? After 1,223 days of treatment, his path from cancer warrior recently changed to that of cancer survivor. And while facing normal follow-ups, regular blood draw, and scrutiny of possible concerns that survivorship might bring, he mainly is a normal 2nd grader, going to school with his friends, playing soccer and Legos, and dreaming of being a firefighter!