Q: Why was the Pounding for Parker Foundation created? Is there a name or place that is already in mind to help research Parker’s specific type of cancer?
The Pounding for Parker Foundation was created for various reasons. Our mission reads: The Pounding for Parker Foundation is a non-profit organization dedicated to advancing research for pediatric brain tumors and improving the quality of life of childhood cancer survivors.
Q: Is the lack of federal funding a passion of the Pounding for Parker Foundation? Are there goals to lobby for change?
The PFPF will raise awareness for lack of federal funding for all pediatric cancer types. Currently only 4% of the National Institute of Health’s budget goes to pediatric cancer research.
That 4% is then broken down between all types with little going to low-grade glioma tumors and nothing going toward oligodrendroglioma. Currently there are other organizations who are lobbying and we will certainly highlight and support those efforts.
Q: Were there stumbling blocks for Parker in getting treatment? Are there preventative tests that other parents should be aware of? Future health issues for Parker and other children with low-grade gliomas – is the foundation focusing efforts in any of these areas?
There are not any preventative tests that we could have taken earlier in life. And, like Parker’s neuro-oncologists says, he doesn’t see a time when children are given an MRI just to be sure they don’t have brain tumors.
There are several molecular profiles that can be taken off of a biopsy. We didn’t know much about this as we were just starting our journey. Because of that, Parker’s tumor wasn’t biopsied to the full extent. There are certain types of treatments he might not qualify for based on mutations that weren’t discovered in his tumor profile.
We would like to raise awareness about testing and profiling from the beginning as new families are on this journey.
Q: Will the Pounding for Parker Foundation be there to support families in some way beyond new research (traveling costs, co-pays, etc.)?
Not at this time. The support for Parker and our family from the community has been amazing but this is completely separate from the Pounding for Parker Foundation’s mission. We want to focus on the future needs that require research and development of support for quality of life long-term.
Q: Are there examples of how the Pounding for Parker Foundation plans to help improve the quality of life of survivors?
In terms of improving quality of life, we are referring to the indirect consequences of pediatric cancer. When an adult is diagnosed with cancer they have a much shorter life span to account for the side effects created by treatment.
In pediatric cancer, the life span post-treatment is much longer and carries a wider array of challenges. Parker already has many challenges that he faces due to cancer. His left hand’s mobility is severely limited; he will have to go through his life learning how to navigate the world in this way.
There are more late effects of treatment than we can list including infertility, heart problems, secondary cancers, etc. The treatments that are used today are more than three decades old.
As children with cancer are living longer, the need for help later in life comes into play. Supporting these efforts is expensive and lacks understanding and funding.