A Cure

Last week, an article about a Belgium boy, Lucas Jemeljanova, who was cured of DIPG was circulating. My sister-in-law sent it to my husband. My coworker mentioned in a conversation one morning. It has been posted in a few online groups and subreddits. Some people see it as hopeful; others see it as clickbait. My thinking is somewhere between those two. 

I don't think clickbait is inherently bad. I personally had never heard of DIPG or DMG before my daughter's diagnosis. I had heard of glioblastoma, another deadly brain cancer, probably because it also affects adults. Adults can be diagnosed with DIPG/DMG, but it is primarily a childhood cancer, and therefore receives less attention (and less funding). If clickbait articles get people paying attention to the most deadly childhood cancer, great. 

But, as a parent looking for information to help my child, the article is also misleading and full of gaps. If you read reports of the BIOMEDE study, he was the only one who experienced long term survival. Most died within 9 months. That is not a cure. The fact is that this disease is not curable - yet. The cancer cells with the mutated messaging are always there. In the brain, it is extremely difficult to get rid of them. You can't surgically remove healthy brain tissue. You can't cut off the body part. You can't blast it with radiation willy-nilly. And it is difficult to find medications that cross the blood-brain barrier. 

There are other articles about successes with CAR-T therapies. One or two patients in a cohort of 10 or 11 who see some success. No last names, no follow-up. No idea if they are still alive. As a parent researching this disease, the lack of details about mutations, cohort sizes, updates on whether someone is still alive or not is a bit maddening. And without these articles calling for more funding, without them calling out the fact that pediatric brain cancer receives so much less funding than other cancers, without them talking about the fact that pediatric brain cancer research is being defunded on the federal level, the possibility of a real cure becomes so much more impossible. 

There was an installation at Cure Fest in DC this weekend for Childhood Cancer Awareness. It was a Wall of Angels with pictures of children who have died from cancer. Picture after picture of kids who died from DIPG or DMG. That is the current reality that so many parents are living with. 

Is there hope? I have to believe that there always is. Maybe my kid will be that rare one-in-a-million who survives long term. It has happened before this current report, and will happen again. But, I also have to live with the reality that statistics aren't on our side. Our truly best hope, and the hope that has been expressed by so many parents, is that our kids will live long enough for a curative treatment to be found. Again, a hope that is impossible without funding and attention.

Yesterday, I read an update that Lucas's cancer had returned after 8 years. While I can't verify if that is true or not, a real update probably won't be published. 

A Song We Used to Sing All the Time

Nathaniel Rateliff & The Night Sweats, "Face Down in the Moment"