Joan Vander Linde is a corporate attorney and lives in La Grange, Illinois, with her husband Jim and two daughters, Maddie and Kate. Kate was 12 years old when she was diagnosed with Acute Lymphoblastic Leukemia (ALL) and has been on a journey to recovery for the past six years. Over this time, Joan learned how to navigate the complex medical challenges involved with having a child in cancer treatment, including participating in clinical trials. Joan also developed strong patient advocacy skills to ensure Kate receives the best treatment possible.
Six years ago, on June 23, 2011, my life changed forever with the following words “I’m so sorry. Kate’s blood test shows that she has leukemia.” Kate was a very sporty 12-year-old who up to that point had been very healthy. It was the last thing I expected or wanted to hear. Although there were some very scary bumps along the way, Kate completed her treatment in October 2013 and we celebrated big time with a huge party and trips to Spain and Disneyland.
However, our cancer journey was unfortunately not over. In January 2015, in a Tahitian hospital while we were on Kate’s Make A Wish trip, in broken English, I heard the dreaded words “I’m sorry. It’s back.” Although I wanted to curl up in a ball and cry, I had no choice but to dust myself off again and deal with it and all the challenges it presented for her, my family and myself—the biggest being Kate’s survival.
Over the past six years, a key part of Kate’s health care journey has been clinical trials. I have to admit that prior to Kate getting sick, I did not think particularly highly of clinical trials. Experimenting on children is not appealing. However, I have learned a lot about them in the course of Kate’s journey. And now not only appreciate clinical trials but advocate for them whenever possible. Parents considering a clinical trial should not think of it as experimenting on their children but providing them care and options.
In the course of Kate’s first clinical trial, we learned how they can provide care and options that increased her ability to be successfully treated. In her first month of treatment, one of the major drugs in treatment for ALL caused her throat to start to close shortly after they started administering it via IV. The nurse told us that we were extremely lucky that the way the drug was administered had just been changed—a clinical trial had determined the drug could be effectively given slowly via IV rather than in a shot all at once as it had been administrated in the past. If Kate had been given the shot, she would have ended up in ICU for at least a week, possibly on a ventilator, until the drug wore off. Because she was given it via IV they could stop the infusion as soon as she started to have symptoms and administer an antidote. No ICU.
Given the severity of her reaction to the drug, Kate could never take it again. If not for an alternate drug available in a clinical trial that she was eligible to take, this would have been a very bad thing for the probability of Kate’s ALL treatment success. It has since been proven that the alternate drug is as effective as the drug Kate was allergic to, and it is now an approved part of the ALL protocol. Without the clinical trial, this option never would have been available to Kate or other children. We have learned that every drug they take is important to their treatment journey.
When you are first told your child has cancer, you think, “please save my child.” The next thing you think about is, “how will this affect my child’s life?” It is bad enough that your child has to endure all the terrible side effects of cancer treatment—at times uncontrollable nausea, fatigue, chemo brain and, especially for girls, hair loss. They also lose a big chunk of their childhood and grow up way too fast. You at least want them to have as “normal” a life as possible after treatment with all the opportunities that their peers have.
When Kate relapsed, we were told that her fertility would most likely be impacted. We hated that cancer would deny her the opportunity to have biological children. There was a potential option though. The hospital was conducting a fertility preservation study. Although it is still in the experimental stages and not proven to be effective, it provides a chance. The fertility preservation study has given us and other families the hope that someday our children may be able to have biological children if they so chose. For us, a potential option is better than none at all.
After all my experiences with clinical trials over the past six years, I truly believe that we do not need to protect our children from clinical trials, but rather we need to embrace clinical trials for the treatment option opportunities they provide.
Pediatric Clinical Trial Resources
Editor’s Note: While many parents, like Joan, work closely with doctors to determine if a clinical trial is the right option for their child, the internet may also provide useful information to discuss during shared decision making conversations. We’ve provided a few of our favorite pediatric clinical trial resources below—we hope you find them useful!
- Children and Clinical Studies: From a documentary featuring real pediatric clinical trial stories told by parents and children to an overview of the clinical trial process from start to finish, this site is a great resource for parents beginning their clinical trial research.
- Would Your Child Benefit From a Clinical Trial?: Looking for a quick overview of pediatric clinical trials? This FDA resource provides a high-level look at why pediatric clinical trials are important, tips on how to determine if a clinical trial is right for your child and what to expect during a trial.
- Lilly TrialGuide: Lilly TrialGuide provides educational information about clinical trials, from clinical trial basics to how you’re protected during a trial and what happens after it’s over. You can also explore Lilly clinical trials opportunities, including pediatric studies.