From Laura Moon,
“A simple thank you to… Children’s Cancer Fund (CCF), a Dallas nonprofit dedicated to improving the lives of pediatric cancer patients by providing funding for a child life specialist and for research. Although this letter says simple, it involves my son and our family’s journey through a life-altering diagnosis, and therefore, isn’t really simple at all.
“If you ask people about worst-case scenarios, brain tumors will likely be at the top of the list. Pick up a book or turn on the TV, and you will notice this theme is prevalent. In fact, I recently watched an episode of ‘The Good Doctor’ that had two brain tumor patients.
“One Sunday evening in early March of 2017, our family found itself in the middle of the brain tumor nightmare when testing revealed a large and inoperable mass in the middle of our (then) seven-year old son’s brain. Although the tumor is inoperable, our son Liam has had two brain surgeries to manage a side effect of the tumor and to biopsy it. He also completed 25 rounds of radiation to stop the tumor from growing.
“I often reflect on how my family reacted to this difficult change in our lives. A child life specialist met us in the ER and helped Liam transition into the ICU by distracting him with a Star Wars Lego set. He played happily because he did not understand the serious implications of his condition. At one point, he even asked me if the hospital was trying to keep him from getting sick. My heart broke. He started asking a lot of questions about what was going on. We knew he would have brain surgery first thing in the morning but had very little information about what to expect or his prognosis. I was so terrified that I could barely talk, and I did not know how to even start answering his questions without terrifying him too.
“Thankfully, a child life specialist was there to help. They are specially trained to help educate children about procedures and treatments. Their methods are clear, reasonable, and most importantly, not the horrible answers that I could not even force myself to say to my son. They bring special books and pictures of equipment, and they discuss what to expect. They did this for my child when I was not emotionally able to do it myself. They bring therapy dogs, and some snuggles from a Golden Retriever named Blair truly made Liam more comfortable when he was being asked to do some very hard stuff. Our child life specialist also made an appointment to meet our daughter to help with her anxiety by explaining the purposes of the equipment and what was happening with her big brother. I believe that the child life specialist drastically improved my family’s ability to tolerate and cope with a horrible situation. Child Life’s involvement made these events less traumatic, which benefitted us immediately and in the long term. We are incredibly thankful that our hospital has these members on their team, and we are thankful that CCF provides funding for this important job.
“We are also incredibly thankful for the advanced technology available to help stop our son’s inoperable brain tumor from growing, and right now, his condition is stable. The hope that we experience is what every parent in this situation wants. Unfortunately, this hope does not exist for far too many families of pediatric cancer patients. Despite the fact that 43 children are diagnosed every day, pediatric cancer research remains underfunded. When I entered this world, I was shocked to learn that only three new drugs have been developed for children in my lifetime. Three. For every type of pediatric cancer. A handful out of approximately 200 adult drugs are also used, but children are different from adults in their treatment needs. Therefore, the tools that we have to provide hope are as follows:
- Surgery (not an option for my son),
- A handful of chemo drugs (also not predicted to be successful for my son), and/or
- Radiation (thankfully this option was available for my precious son at an adult hospital where they had to build a plywood platform to trick the software into working on a child).
“I have ached for so many families who do not have any options, and I mourn for them. I believe that we can do better for our pediatric cancer patients. So does CCF. I am incredibly thankful that CCF has donated almost $10 million to support pediatric cancer research in Dallas. The funding that CCF has provided increases the likelihood that more families will experience hope. Furthermore, this funding helps our local hospitals be the type of facility where you would want your child to be if needed.
“Lastly, I am thankful that CCF gave my son ‘the best night of [his] life’ at their annual fundraising gala, which they hold in April. This beautiful event is inspirational and the best social event of the year. Our family cannot wait for the next one, and we enjoy watching highlights seen here.
“So CCF, the Moon family sends you a heartfelt but not-so-simple thank you for improving the lives, outcomes and hope of pediatric cancer patients. You truly make a huge difference in our community and beyond.”
* Photo credit: Thomas Garza