When a child receives a DIPG diagnosis the only standard course of treatment is radiation. After that no one really knows what is best.
Some families will not pursue radiation. Some families will pursue radiation and nothing else. Some families will pursue radiation and clinical trials. Some families will change diets, apply oils and try natural or alternative healing methods. Some families will fly around the world searching for any treatment that may extend the life of their child.
The good news is that everyone is doing what they believe is best for their child and their family. The bad news is that there is no right answer.
When Clare was diagnosed, Chris and I felt radiation was the best choice for her and our family. The risk was relatively small. The potential reward was more time. Her quality of life would not be compromised. After radiation we were planning to enjoy the time we had left.
Then Clare completed 10 radiation treatments. Then 15. Then 20. I cried through treatments 27, 28, 29 and 30 because I did not know what we should do next in her treatment. And the thought of doing nothing was unbearable. The thought of doing nothing felt like giving up. That didn't mean that the right answer was to do something though.
Our oncologist spoke about one or two potential trials, but our choices were limited because Clare was not able to have a biopsy of her tumor. A trial at Cincinnati Children's Hospital kept coming up in our conversations. We researched and spoke with several doctors who specialize in DIPG and pediatric brain tumors. We sought opinions from the smartest people we know in nursing, medicine, research and public health. We sought opinions from people who may not be the smartest in our circle, but who make the best mixed drinks. We spoke with DIPG parents, families on the trial, and anyone we could find who would be able to offer insight.
We must have changed our minds 396 times about what to do next. In the end, we decided to begin a clinical trial at Cincinnati Children's Hospital Medical Center. Clare has begun chemotherapy in an effort to keep her tumor stable for a longer period of time.
This was, by far, the hardest decision we have ever made. I have wanted to change my mind several times after we enrolled. I wanted to change my mind when Maren had a complete baby breakdown on hour 3 of the car ride down to Cincinnati a few weeks ago. I wanted to change my mind when Clare had to get multiple tests and spend the night in the hospital. I really want to change my mind every morning when Clare screams and cries when we try to get her to take the medicine.
There is so much unknown in DIPG. We don't know what the best course of treatment is. We don't know what kind of mutation(s) of DIPG Clare has. We don't know if these drugs will help. We do know that this is the worst thing a parent can experience. And we are hopeful that we may get a few breaks in this awful experience. We are hoping this may be a lucky break and this decision may help Clare.