Have you ever heard of DIPG?
I’m going to take a break from gossip for a moment to get serious ... and sad. Have you ever heard of DIPG? It stands for Diffuse Intrinsic Pontine Glioma, which is a brain tumor. This type of brain tumor attacks the brain stem, and usually attacks in children. When a child gets this diagnosis, the cold ugly truth is that his or her parents are essentially told “your child is dying, and there’s not much we can do about it”. I cannot imagine much worse in this world than a parent being given that news.
I learned about DIPG when a friend’s son was diagnosed with it a little over a year ago. He underwent radiation to extend his life, followed by an experimental treatment that showed promise in the beginning, but was not enough to save him. He died March 1 of this year.
Today would have been his 11th birthday. It’s been weighing on me a lot today that this mom who last year had to be told her son was dying and there was nothing that could be done today does not get to race around buying cupcakes and candles to celebrate with her son. Parents deserve hope - and they should get to hug their kids on their birthdays.
We can give parents hope when told their kids have cancer if we devote more to researching pediatric cancers. The drugs that prove effective against cancer are so strong that we can’t just translate what is done for adults into kids. Currently, 4% of cancer research dollars go to pediatric cancers in general. I opened this by asking if you’d ever heard of DIPG because right now, 0% of cancer research dollars go towards DIPG research. We owe parents of these kids more - and we really owe the kids themselves more.
So I’m remembering my friend’s son today be spreading the word. If you didn’t know about DIPG before, hopefully the next time you hear about it you’ll know a little more about what it is. If you have a chance to advocate for increased funding for research of pediatric cancers, please do. If you want to put money towards it yourself, St Judes does wonderful work for families facing pediatric cancer, and does research for DIPG. The ChadTough Foundation and the Michael Mosier DIPG foundation are also two charities started by families who lost children to DIPG. Both raise money for research and for supporting families whose children are going through treatment now trying to extend their lives.
If you made it this far in this blog, thank you for reading.
