FOCUS ON PEDIATRIC CANCER
Sunday, March 02, 2014, by Rebekah Sizemore
I decided for the Month of March, in honor ofĀ Naithan, that I would try to get as much information about pediatric cancer, research, and fundingĀ to all that I know. To increase awareness and knowledge in hopes of helping other children. So here is my first post. š Please share with as many people as you want.
NCI budgets approximately Ā $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 atĀ NCI (The National Cancer Institute ā located in Bethesda, MDĀ at the National Institutes of Health)Ā 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 researchā¦you are asking parents to ātestā on their children. That ātestā (clinical trial, untried meds, etcā¦) may NOT save their child. Many parents are willing to make these decisions regarding their own bodiesā¦but are very hesitant when it comes to their child and this makes perfect sense. Ā Iām 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 ācelebrates birthdaysā provides even less than 4% of their yearly intake to childrenās cancers?? That includes Relays for Life, Coaches vs. Cancer, Making Strides Against Breast Cancer, etcā¦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 HOPEā¦and right nowā¦that isnāt happening. Let me tell you a story, a small piece of our livesā¦.
Itās September 4, 2012. Our whole family is in the ER at The Childrenās Hospital of the Kingās Daughters, Naithan and I have been there since 10amā¦it is now 8pm. Two doctors walk in with a social worker. One doctor I know, he used to treat Naithan for his migrainesā¦the other doctorā¦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 couldnāt 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 āoncologistā
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 Naithanās 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. Letās go to surgeryā¦remove it. NOW.
No, we cannot. This tumor is inoperable. It is in his brain stemā¦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 thisā¦.dump some oil in some water. The oil is the cancerā¦the water is your healthy, functioning cells. Cells that tell your heart to beat, your lungs to work, your body to breathe, etcā¦
Now, remove the oil. Do not touch or remove any water. What you remove may tell your heart to stop beating.
Okay, Okayā¦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 everā¦
āAre you telling me I wonāt see my son turn 13 !?!ā
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 hadnāt been tested yet, or hadnāt justā¦whatever. Learning procedures for adults were outā¦but not children.Ā Learning that there are SO many chemo drugs for adultsā¦and so very few for kids.
Learning that although DIPG has been known about for 35 yearsā¦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 curableā¦many not.
Iām not asking anyone to stop supporting your causeā¦Iām only asking that you consider childrenās cancer research also. And if you want to help childrenās cancer researchā¦please, please make sure that your organization is REALLY helping pediatric cancer research.
