FOCUS ON PEDIATRIC CANCER
Sunday, March 02, 2014, by Rebekah Sizemore
I decided for the Month of March, in honor of Naithan, that I would try to get as much information about pediatric cancer, research, and funding to all that I know. To increase awareness and knowledge in hopes of helping other children. So here is my first post. 🙂 Please share with as many people as you want.
NCI budgets approximately  $200M to pediatric cancer. That is about 4% of their budget.
This number was cited often.
Pediatric cancer research in the US is heavily dependent on NCI funding. There is growing philanthropy (eg SU2C), but it remains small compared to NCI funding. There is little industry (pharmaceutical) investment. Because of this funding model, pediatric cancer is disproportionately hurt by US federal budget cuts to NIH. Adult cancers have significant industry and philanthropic investments to buffer NIH cuts.
The previous comments were taken from another DIPG parent who actively attends meetings about pediatric cancer. What he brought back from the recent meeting held at NCI (The National Cancer Institute – located in Bethesda, MD at the National Institutes of Health) are heartbreaking. There are so MANY cancers in the world, many of which affect ONLY children. The majority of pharmaceutical companies do NOT invest in pediatric research. I agree that pediatric cancer brings a whole different ballgame to cancer research…you are asking parents to “test” on their children. That “test” (clinical trial, untried meds, etc…) may NOT save their child. Many parents are willing to make these decisions regarding their own bodies…but are very hesitant when it comes to their child and this makes perfect sense.  I’m not sure how to fix this yet, but there needs to be a way to bridge the gap between adult and pediatric cancers, and there definitely NEEDS to be more equal funding!! I was astonished to see that only 4% of NIH (The National Institutes of Health) funding goes to pediatric cancers. It breaks my heart. How many of you realize that The American Cancer Society, which “celebrates birthdays” provides even less than 4% of their yearly intake to children’s cancers?? That includes Relays for Life, Coaches vs. Cancer, Making Strides Against Breast Cancer, etc…all of those are wonderful, absolutely wonderful fundraisers that give less than 4% to children.
We need, as a society, to recognize that ALL cancers are deadly, ALL cancer patients need HOPE…and right now…that isn’t happening. Let me tell you a story, a small piece of our lives….
It’s September 4, 2012. Our whole family is in the ER at The Children’s Hospital of the King’s Daughters, Naithan and I have been there since 10am…it is now 8pm. Two doctors walk in with a social worker. One doctor I know, he used to treat Naithan for his migraines…the other doctor…I have never seen before. He does not introduce himself yet. The doctors ask if Josh and I will go with them and they promise that Megan (the social worker) will stay with the kids.
I am so nervous! We came in thinking that Naithan had a possible concussion! What the hell was happening? What couldn’t they tell us in front of our children? We follow them to a small room and they shut the door. We all sit on couches and the other doctor finally introduces himself. His name is Dr. Owen and he is the pediatric oncologist on call that day. Wait!?! Did you say “oncologist”
YES. We have to tell you that we did not find any signs of a concussion but the MRI showed a tumor. A brain tumor. Cancer. It is in Naithan’s brain stem. At that time I still thought the brain stem was at the base of the brain, where your neck meets your head (boy was I wrong)
Okay, okay, cancer, a tumor, okay. Let’s go to surgery…remove it. NOW.
No, we cannot. This tumor is inoperable. It is in his brain stem…the middle of his brain. The part of his brain that corrals of the nerves that operate the rest of your body. If we remove it we may remove healthy, functioning cells.
Picture this….dump some oil in some water. The oil is the cancer…the water is your healthy, functioning cells. Cells that tell your heart to beat, your lungs to work, your body to breathe, etc…
Now, remove the oil. Do not touch or remove any water. What you remove may tell your heart to stop beating.
Okay, Okay…I understand. No surgery. Chemo?? What do we do from here. How to we cure him.
The next thing we were told broke me. Simply broke me.
There is no cure.
Less than 20% of diagnosed children are alive within ONE YEAR of diagnosis.
Less than 1% of diagnosed children are alive within TWO YEARS of diagnosis.
Maybe 5 children have survived this diagnosis [to five years]. (I found only 2 in my research)
I looked at Dr. Owen and said some of the most painful words ever…
“Are you telling me I won’t see my son turn 13 !?!”
And then I was told that Naithan may not make it to 12.
At that point, I could take no more. I needed them to leave. I needed to regroup, I needed to think, I needed a break.
What followed was 14 months of intense research, learning more about chemo and radiation, remaining hopeful while slowly dying inside, finding time and time again that slow steps had to be taken because that med had never been given to a child, or hadn’t been tested yet, or hadn’t just…whatever. Learning procedures for adults were out…but not children. Learning that there are SO many chemo drugs for adults…and so very few for kids.
Learning that although DIPG has been known about for 35 years…there is still NO cure. No definitive steps for success.
Meeting other DIPG parents, reading about and meeting their absolutely amazing children.
Meeting other cancer parents, with other types of cancer. Some curable…many not.
I’m not asking anyone to stop supporting your cause…I’m only asking that you consider children’s cancer research also. And if you want to help children’s cancer research…please, please make sure that your organization is REALLY helping pediatric cancer research.
