I am a survivor of terminal childhood brain cancer and a former Make-A-Wish kid. AMA

With these “last wishes” I’m always worried that it’s like when parents say “make a list of things you may want for your birthday.” I know for me, I don’t think I could think of something that I would want for a last wish, and would have probably just picked something everyone else wanted.

Was the trip something you truly wanted to do? Was it truly a “wish” you had for yourself to see Hawaii?

They didn't ask "what is your last wish?" They asked several questions. Such as, "Who is your favorite actor?" And "What place would you want to visit most?" - No mention of "death", "before you die", or "last wish" was made.

At the time, my favorite actor was Will Smith and yes, Hawaii was a place I really wanted to visit. They ask several questions so they can have multiple options on a wish to grant. Like if they couldn't make Hawaii work, they may have seen if I could meet Will Smith or something

Do you know what happened to turn your case around? How did you go from 1 or 2 years to where you are now?!

Incredible story man

At the time, back in 2005, doctors knew very little about the specific type of tumor I had. I was told when I was diagnosed that only 3 other people globally had even ever been diagnosed with a pilomyxoid astrocytoma. All of them only lived about a year or 2 after diagnosis. Doctors had no idea why my surgery and treatment was so successful (I only did radiation therapy, never had to do chemo, because the radiation worked)

The hospital sent my tumor off to be studied and they continued giving me regular MRI scans every year up until just now. I finished my final MRI checkup this year.

Is the memory loss more concentrated to around the time you had the radiation treatment done or is it a constant ongoing thing?

Short term memory loss. All my long term memory is fine. I can tell you anything about my past, but may not remember your name after meeting you or what I had for breakfast or why I called you.

I had a wish, like you, from having leukemia has a child. My wish, originally, was to have a custom laptop made for me. In hindsight it was dumb, and I'm glad my Dad talked me out of it.

Instead, I did a shopping spree in New York, there they gave me 1500$ or so. Got to meet a few people, and the shopping spree ended up being so much more.

Like you, I had radiation on my brain, though I'm doubtful it was as extreme as yours.

Like you, I think I've finally come to realization that I probably do suffer from STML, or at the very less have ADHD, haha.

Like you, I can remember past details pretty vividly, but I often forgot if I had brushed my teeth for the day, or what I had to eat. Seemingly trivial things like that. Makes me wonder if the radiation I had to go through is also the cause of it.

When going through treatment, they were worried that my IQ might drop, but seemingly the doctors did tests after wards (I don't remember these in the slightest), and they said I was fine. I had to do radiation treatment for around 4-5 weeks, once or twice a week. It wasn't too much. I do remember HATING the smell when they did it though.

The smell is Ozone. Not all patients smell it. I was able to both see and smell the Radiation. Visually it was flashes of Blue light across the room. The phenomenon is called Checknov Radiation.

But does that effect long term memory? If your short term can’t hold it, does it still transfer to long term? Or is it more of a “generally I remember but not details”?

Yes, it effects long term memory in that way, any memories not being coded into short term will not make it to long term

How does your impairment affect your everyday life? Are you able to get accommodations at your job for it

Yes. I actually currently work for the hospital that saved my life back in 2005 - Vanderbilt Hospital in Nashville, TN.

My boss is well aware that I have memory issues and has never had an issue making accommodations for it.- back when I was in school, teachers were happy to make accommodations as well.

I've made several changes over the years to my day-to-day life that help improve my memory, such as taking notes daily, repetition, and setting reminders.

I've read that if someone grows up with memory issues, they actually cope better later in life if they develop Alzheimer's or dementia than someone that didn't grow up with Memory issues, because the person that grew up with memory issues already knows how to compensate for their memory issues. They don't have to learn to compensate while also dealing with the effect of dementia or Alzheimer's

This is so interesting. I have ADHD and my working memory is impaired. People often tell me about the despair they feel with “COVID brain” and it’s very similar to the things I have to cope with for adhd. It seems similar if wayyy less intense than what you’re describing with short term memory and Dementia.

What are some of your best tips for someone working to improve their memory?

Take notes, carry a small pocket notebook or use your phone to write down things you need to remember later. Leave notes and post-its around for reminders or set reminders on your phone. Get a dry erase board for your house and hang it in a central area of your house, write down reminders, grocery lists, etc. Get a physical calendar and hang that in a central area as well. Use Repetition a lot. Repeat lists in your mind or out loud that you need to remember. Like if you're going to the grocery store for egg, bread, and butter, then write them down or repeat "eggs, bread, butter" at least 5 times in your mind or out loud. If you're married, download a shared calendar/list app. Both of you can create lists or add events to your shared calendar and it automatically syncs and updates with each other. Make a habit of double checking everything, and have a designated spot for all your belongings at home. Like your car keys for example, everytime you get home just put them in the exact same spot every single time. It makes it harder to forget where you put stuff.

Did you have to give the Wish back?

Yes

I don't think you do, in the context of OP's question. My stepson is a survivor of ALL-B (leukemia). His Make a Wish Trip was the Bahamas and his family doesn't have to repay it because he survived

I assumed their question was a joke

So, all these years, did you think you might die in a few days? Or did you figure after a point that you're gonna make it?

Slowly, but eventually both me and my doctors accepted that I was likely in the clear, but they continued giving me MRI scans every year. This did cause a situation every year where I'd get an MRI and then a few days later I'd receive the results. Those few days of waiting for results each year sucked. Not knowing if they're going to say the tumor started growing again. My doctor said the next 18 years of yearly checkups effectively made it so I never actually got to NOT be a cancer patient. I've been diagnosed with PTSD from the experience and years following.

How did radiation affect your development and teenage years? The reason I ask is my stepson is nearly 17 and he's a survivor of b cell acute lymphoblastic leukemia. It's made his teenage years kind of rough with food choices, stomach issues like ulcers, and he worries about his "reproductive prowess". Like right now he's underweight, but is a picky eater because of the ulcers. Also, he has a really bad case of "carpe diem fuckit syndrome" (my term) wherein he does stuff that's just ... not conducive to a productive future 🤣 where you seem to have come through very positively, so I'm looking for some lessons to pass along 🙂. Thank you for all that you're doing

It almost certainly stunted my growth. I'm 5'9, but all the other men in my family are 6+ft. I have to wear glasses, my vision is pretty horrible.

I also had "carpe Diem fuckit syndrome" for many years following the experience. Really didn't lose it until I got married and had kids and had something other than my own future to look forward to. As a teenager that just realized how young I could die, I didn't think about or plan for my far future much. Trying to enjoy each day as much as possible, without giving much thought to how it would effect me many years later. If you're 17 and realize it's a possibility that you won't live to turn 20, why would you spend time worrying about planning for a career or retirement? My favorite quote ended up being "Time you enjoy wasting is never wasted." and I lived by it. But I also stopped caring a ton about things like my health because, "why eat healthy and exercise if I may not be around in 5 years?" I also for many years wondered if I had the ability to have kids because of the radiation. Doctors weren't sure if it had caused any effects. But I now have 2 healthy kids, ages 9 months and 2 and years old. Now, I want to live as long as possible to see them grow old. I want to eat healthy and exercise so I can play with them throughout their whole childhood. I want to see what sort of people they become.

Epileptic here! I found out I had a brain tumor in my occipital lobe by having a seizure. I had three brain surgeries because of it too. So my question to you, how did you find out that you had a brain tumor?

I started getting sick, couldn't keep down food for several weeks. Family doctor kept saying "it's just a stomach bug, no need to worry." But eventually my mom did worry and took me to the ER and explained what had been happening. They immediately did a CAT scan, then returned to let us know they believe I have a brain tumor. They did an MRI to verify and the doctor recommended brain surgery as soon as possible.

How was the trip?

Awesome. Got to learn to surf, got to take a helicopter tour over a volcano, got to go to a luau, got to eat great food each day. All great memories.

How was the process? I have family that has cancer and it’s been absolutely dehumanizing and debilitating.

Being so young and not fully grasping how serious the situation was really helped. When I was diagnosed, I didn't even know what a "brain tumor" was.

Is your story the only one like it or have others successfully been treated in that way?

At the time, back in 2005, doctors knew very little about the specific type of tumor I had. I was told when I was diagnosed that only 3 other people globally had even ever been diagnosed with a pilomyxoid astrocytoma. All of them only lived about a year or 2 after diagnosis. Doctors had no idea why my surgery and treatment was so successful (I only did radiation therapy, never had to do chemo, because the radiation worked)

The hospital sent my tumor off to be studied and they continued giving me regular MRI scans every year up until just now. I finished my final MRI checkup this year.

How long after your make-a-wish trip did you find out you were cancer free? What were your feelings when you found out? Were you able to go back to the life you had before cancer?

There was never a "congratulations, you're cancer free!" moment. Just yearly brain scans for the past 18 years to make sure the tumor still hasn't started growing again. My doctor just now as of this year feels comfortable stopping the brain scans.

Do you do anything with Make A Wish like speaking, counselling, anything like that? I'm thinking if I was a kid with an extremely serious illness that has been referred to them, knowing you were out there and hearing your story would give hope that it all doesn't have to end one way.

Amazing that you pulled through mate, all the very best to you and yours.

The Make-A-Wish employee that granted my wish, I still know and talk to. She started her own company called Dreams and Wishes of Tennessee. They grant Wishes for local Tennessee kids that relapse from cancer. I've helped her organize several events and fund raise for kids. Back during the 2016 Pokémon Go summer, I organized a city-wide competitive fund raiser between the 3 Pokémon Go teams to see which team could raise the most money for kids with cancer. Local business gave out prizes and the mayor dedicated the day in honor of the event.

Have you ever seen the movie Memento? After reading your other replies here (particularly the one about learning how to deal with short term memory loss) I wonder if it affected you in a more personal way?

I've seen Memento and I like the movie, but being that I was so young when I was diagnosed, the movie that I related to more at the time was Finding Nemo and the character of Dory (who has short-term memory loss).

Thx 4 AMA. How do you cope with day-to-day activities with your short-mild term memory? Is any of those compensations that you think would also be useful for subjects with Alzheimer? If I am not wrong, Alzheimer also affect mild term memory, but long term memory is fine.

Take notes, carry a small pocket notebook or use your phone to write down things you need to remember later. Leave notes and post-its around for reminders or set reminders on your phone. Get a dry erase board for your house and hang it in a central area of your house, write down reminders, grocery lists, etc. Get a physical calendar and hang that in a central area as well. Use Repetition a lot. Repeat lists in your mind or out loud that you need to remember. Like if you're going to the grocery store for egg, bread, and butter, then write them down or repeat "eggs, bread, butter" at least 5 times in your mind or out loud. If you're married, download a shared calendar/list app. Both of you can create lists or add events to your shared calendar and it automatically syncs and updates with each other. Make a habit of double checking everything, and have a designated spot for all your belongings at home. Like your car keys for example, everytime you get home just put them in the exact same spot every single time. It makes it harder to forget where you put stuff.

How exactly does your memory work? Also, your long term memory works fine?

Longterm memory is fine. Just mild short term memory loss.