IAmA fifteen year old with aplastic anemia a getting chemo for an upcoming bone marrow transplant next week. Ama.

Hope the transplant is a success! Two questions,

1: being there for 5+ years, what things did you wish were easily accessible and non restricted?

2: favorite video game(s), if not, what's a go to hobby that you enjoy?

Sending love here from Connecticut!

1: my bad, I think I phrased that badly. We've lived in Houston the last five years, this whole thing is more recent.

2: as for video games, it jumps around. I saved up to get a vr headset with web design commissions a free years back and I've had a ton of fun with that - Pavlov, essentially vr csgo, is a hell of a fun time. Also the obligatory classics - Minecraft, Portal, and I've just started the half life franchise which was super cheap for the steam sale. I enjoy programming in my spare time, I've gotten to the point where I can make reasonable amount of money off of web design so that's super cool.

Thanks for the questions!

How did “Make a Wish” get in contact with you? Is that something the hospital did or that you have to apply for? I’ve never known how that all worked :)

Is this transplant supposed to completely “fix” you? Is this the beginning or an end of procedures?

Hanging out with your parents at that age can be interesting lol I remember being that age :) Sounds like you appreciate them though which is awesome! Cherish these times (as much as you can at least) because once you’re an adult it will definitely be something you hold onto dearly.

Do you and your parents get along? Do they like play games and hangout with you or?

Iirc the make a wish thing was set up by the social workers at the hospital. They arranged for them to call us and get everything set up. Ideally, the transplant will solve everything yeah. I'll be severely inventory compromised for the next year at least - the chemo is killing off my immune system so I'll essentially get someone else's. For the most part I get along with my parents - there is the occasional argument but hey, I figure that's expected at this age lol

If you aren’t disagreeing at all then you aren’t thinking for yourself is how I feel :) My kids are all over 18 now but growing up I always encouraged them to tell me (respectfully) if they didn’t agree or if they wanted to understand why I asked them to do something etc Critical thinking is extremely important!

Well I wish you all the luck! Sounds like you’ve got a strong support system and extremely knowledgeable people around you to help make you whole. Sending all the good juju :)

Oh believe me, there's plenty of disagreement lol

What would you most like to tell us that no one ever asks about?

Not sure if it really answers the question but I've always been a little overweight. I've been swimming for a while and I really am in decent shape, but not with aplastic anemia I can't walk more than fine minutes without running out of breath - everyone just assumes I'm a fat kid and that's why.

I guess it really comes down to people judge you by their first impressions, and it's not a great feeling

are you afraid to loose your life?

This is the one thing that really scares me. It seems so unreal that it's actually a possibility, but at the same time I know it is - I guess I'm just in denial, but every once in a while I think "what if?" I'd be leaving a lot behind, and it's not a nice thought.

How are you feeling today? And what's your favorite movie and/or TV series? I hope you're doing okay!

Today was.. Not great. Second dose of chemo, yesterday's went fine but today I set the threshold for a ten on my personal pain scale. Out of nowhere went from sitting at my laptop to the worst pain of my life in the form of a headache. Morphine, blood pressure medication and IV Tylenol did the drink, thank God.

Ironically, my favorite show of all time is probably House MD. It's a bit formulaic but I found the show to still be really good, and the overarching story line was fantastic. Parks and rec probably come in close second.

Thanks for your questions!

Sorry to hear you experienced that much pain today. It sounds awful. I hope you can find ways to distract from the pain. House is a great choice for favorite series. It also has a really good series finale.

I wish you luck. You seem to have a good mindset. Good luck with your programming!

Here's one last question you can choose to answer or not: If you created a VR game, what would it be about?

I've never really thought about that one. I've tried making a normal game a few times but always give up - I guess the time is now huh?

Did you try any ATG treatments? My brother had aplastic anemia when he was 22 and did a round with the rabbit protein that didn’t work and then did a round with the horse protein that did work. He wasn’t able to find a match for a bone marrow transplant so that wasn’t an option.

That was almost ten years ago and he is doing very well now. He is married and has a beautiful son. Best of luck to you with your transplant. So glad you were able to find a match!

Thanks!

The doctor's opinion was the horse/rabbit shit wouldn't work in my case. At Texas Children's they were doing some study and I would have been randomized to either atg or transplant upfront which is why we came to Wisconsin - for an upfront transplant.

Hello! Sorry for your situation, if these questions make you uncomfortable there is no need to answer:

1: Has anyone every brought you down because of your anemia?

2: Do you go to school? If so, does anything special occur in it?

3: Have you met others with aplastic anemia in person?

I wish you the best of luck with your situation and I hope you get better very soon

No problem.

Not really? Sometimes people assume I'm just a fat ass and that's why I get tired from walking alone or so much as changing clothes, but for the most part people are understanding.

I've been homeschooled since second grade. When I say that people immediately seem to picture a troubled/autistic kid, which gets a bit annoying but hey what can I say. I've always had more time to spend on my interests-music, programming, etc-without, and this night sound cliche, being part of the flock of sheep in a high school.

I haven't met anyone in person with my condition. I've sent a few emails back and forth with successful transplant patients from this hospital but that's about it-i never find it overly helpful to "talk about it".

Hope I answered your questions, thanks for your interest!

Do you feel like you have a good support system through this? What do you do to cope? (Ps. You are very brave and amazing)

I mostly do programming and graphic design to pass the time. The team here at the hospital is amazing as well; they have a bunch of Legos and shit to pass the time which had certainly helped and a communal "teen room" on the floor with an Xbox, PS4 and some board games etc. Thanks for the questions :)

Do they think the liver failure had anything to do with the subsequent aplastic anemia diagnosis?

Yeah, forgot to cover this. It's actually a known thing called hepatitis-associated aplastic anemia. Hepatitis doesn't just mean the diseases - hepatitis is liver inflammation, and hepatitis a, b, and c, can all cause it. None if those were the cause though.

Essentially when my body fought the liver inflammation it decided it was bored and needed something else to fight. Rip marrow.

Since you’re hanging out in a hospital, do you see large amounts of people dying of covid or hooked up to respirators clinging to life?

I do not. I'm in the children's hospital here and there's a separate floor for cancer and blood disease patients which is where I am - I've heard most of the hospital is empty except this floor and a few cases of other immune compromised kids in isolation for covid.

Do you watch 90 day Fiancee?

Never heard of it, why?

Theres a woman on it who had aplastic aneima, I just wondered if it was as... debilitating as she made it seem. Its a reality show so she comes across as an awful person. Its tough to tell if she just uses it as an excuse to be a jerk.

Well I haven't seen it but I can try to testify. It's easy to use it as an excuse; with low hemoglobin (red blood) I feel like shit, constantly tired, grumpy, and get out of breath from so much as taking a shower. But then again, I think it depends on the actual patient - it's a conscious choice whether to be a dick, and I try not to when I can.

Might have to check out the show now lol

Do you believe in skeletons?

🤔