has that been anyone’s first sign in their child? She‘s 10 months, still isn’t crawling or pulling to stand so the bruise isn’t mobility related.
Hi everyone,
I’ve been reading this subreddit for a while, mostly silently, trying to understand something that, until a few weeks ago, I didn’t even know existed.
I’m the father of Eric, who is 13 and a half years old. I’m a single father and I’m 100% responsible for my two children. We live in Spain.
A few weeks ago, Eric was completely healthy and active. Then he started having very brief episodes of losing his vision. After several tests and scans, doctors found a large brain tumour in the occipital area.
He had major brain surgery on July 30th. Thankfully, the surgery went very well and the neurosurgeons were able to remove 100% of the tumour. Eric recovered remarkably well. He was out of ICU very quickly, in 20 hrs., was eating, talking, walking around and basically complaining that he was bored in hospital — which, honestly, was one of the best things I could have heard.
For a while we thought we were dealing with a high-grade glioma or possibly an ependymoma. Then the pathology and molecular testing started to point in a completely different direction.
The current diagnosis is CNS neuroblastoma, and our doctors suspect the FOXR2-activated type, although we are still waiting for the final molecular confirmation.
This is where things become very strange for us.
Apparently, this tumour is extremely rare, especially at Eric’s age. We have been told that, in Spain, Eric may be the oldest patient ever diagnosed with this type of tumour, at 13.5 years old. The previous oldest case known to our doctors was around 11 years old.
Because of how unusual his case is, the pediatric oncology team in Spain has been in contact with multiple specialist hospitals and teams across Europe, discussing Eric's pathology, molecular results and possible treatment approaches. They have been reviewing his case very carefully and looking for the best possible treatment strategy.
We are incredibly grateful that this process has resulted in Eric being referred to Aarhus, Denmark, where he can be assessed and potentially treated with proton therapy and chemo as part of his treatment plan. We will probably packing our bags and going to Denmark in 3-4 days, and remain there for 5 weeks for a combined proton- and chemotherapy.
For us, the fact that the doctors have gone to these lengths and have managed to get him accepted for evaluation in Aarhus is extremely encouraging. It tells us that his medical team believes there is a real treatment strategy with curative intent and that they are fighting for the possibility of getting him completely cured. Of course, we know nobody can promise that, and we are still waiting for the final molecular results and treatment plan, but having this option gives us a lot of hope.
At the moment, we are waiting for the final molecular results and for the treatment plan to become clearer. His lumbar puncture was done a couple of days ago, and our doctor told us that 2 of the 3 tests have come back well and that, at this point, he does not believe the tumour has spread. We are still waiting for the last result.
Eric is doing surprisingly well considering everything that has happened. He is still very much himself — funny, stubborn, hungry, annoyed by hospitals and desperate to get back to normal life.
And I’m trying to do the same thing every parent here probably understands: stay calm in front of your child while internally trying to understand an entirely new world.
I would really love to hear from other parents who have been through CNS neuroblastoma, particularly FOXR2-activated cases, but honestly, any parents who have gone through a long pediatric cancer journey would mean a lot to me.
What I’m most interested in is not just the medical statistics. I can read papers and statistics all night, and believe me, I have.
I want to know what the next few years actually look like from a parent's point of view.
I am incredibly grateful that we have the opportunity to take Eric to Denmark and to have specialists looking at such a rare tumour. At the same time, I’m terrified of what the next few years might bring.
I know many of you have been living this reality for much longer than we have, and I would be incredibly grateful for any advice, experiences, encouragement or even just stories about how your children are doing today.
To everyone here fighting alongside their children: I’m sending you all a huge hug. ❤️
Thank you for taking the time to read Eric’s story.
— Marc