I Am A 13-Year-Old Stage IV Osteosarcoma Fighter. AMA!

as a parent this has to be a horrific roller coaster ride. usually it's the kid that helps them be strong (vs other way around). how well did your parent's cope? (here's hoping they have great medical insurance)

They didn't cope very well. My mum and dad argued a lot, and my mum yelled at me more than usual. I can't blame her, though, because this had to be stressful. They ended up filing a divorce, and my dad moved out.

Near death experiences? Can you explain? Did you experience anything supernatural during these experiences?

Keep staying strong! You can beat this!

Well, no, I didn't experience anything supernatural. I am an atheist, so I didn't really expect to, either, haha. The near-death experience was on the operating table. It was when I was having the lung surgery - the surgeon accidentally hit a major blood vessel while trying to scrape a tumor out. They tell me I lost 4, almost 5, units of blood, and just barely survived.

I don't know why it says 2 in the description. Typo, I guess. I'm going to fix that.

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Not really. I'm a straight female, and there's only ever been 1-2 male nurses that I know of. One of them was smoking hot. I only saw him once, though.

What negative or pessimistic feelings about life in general, if any, did this create, and how do you cope with them?

Hmmm. Well, I don't know if this counts towards being pessimistic, but my diagnosis is the reason why I suddenly converted to atheism. If there was some higher power, like God in the Christian Bible, it wouldn't allow me to suffer according to the works. But it did.

I honestly felt like ending my life at times. I'm never going to be normal again after this, I know, and I don't want that. I have to take anti-depressants because of the way this has affected me.

Have you developed any fears or phobias since diagnosis? I am also a teen cancer patient (thankfully in remission) and I developed a sizable phobia of needles and IVs during my treatments - curious to see if anyone else has similar experiences

Oh my gosh, yes! I have developed a fear of needles due to the fact that my veins are so blown out from the chemo. This means that when the nurses stick me, they usually have to stick more than once.

At one point, when I was getting a CT scan, they had to stick me 5 times so they could give me the radioactive dye stuff. A vein also collapsed when they were doing that. shiver

If they stick me once, fine, but stick me more than once? You've got a sobbing 13-year-old on your hands. :/ Heh.

You didn't get a port?

I do have a portacath. But, for example, during CT scans they say they can't give me the dye stuff unless I have a PowerPort. And some people don't know how to access a portacath, so ...

I do have a portacath. But, for example, during CT scans they say they can't give me the dye stuff unless I have a PowerPort. And some people don't know how to access a portacath, so ...

You had to fight a lot harder than most people just so that you could live your life. What are you going to do with it now that you have it?

Good question! I've thought about that, and I say I will probably become a veterinarian. I want to get married, and maybe have a kid or two , if I'm still fertile after all this chemo. Even then, if I'm not, I'll probably just adopt.

Originally, I intended to join the Air Force, but I don't know if I would be allowed in due to my medical history. Therefore, I've turned my attention elsewhere.

Great idea. There's not a damn thing wrong with adoption.

Yea. I was adopted myself, at 3 days old.

Also, you seem to have an unusually high writing level, do you have some kind of outstanding academic or intellectual background?

I've been in Honors classes all my life, so I suppose you could say that. I've never made a grade lower than a B-.

I've rewritten this comment several times because I've got a million questions and I don't even know how to say them. What was it like to find out? What were your first thoughts? How does media portrayal of cancer (TFIOS, etc) compare to everything you've experienced? Thank you for doing this AMA! It's so awesome that you're so close to being done with this fight. :)

Well, to put it in simple terms, it was terrifying to find out. There was a whole range of emotions in my head - shocked, angry, scared, the whole spectrum - and my first thought was, this is so unfair. The diagnosis affected me so greatly that I've since had to start taking anti-depressants.

TFIOS portrays it okay. However, a few things I didn't like about it - why were two cancer patients, both terminal, allowed to go to Amsterdamn by themselves, when anything could have happened? No. Not realistic. If anything, after having your kid be diagnosed with cancer, the parent will become more protective, not less. I'm not even allowed out of the house by myself.

I also don't like that Augustus' cancer apparently spread everywhere. No. Osteosarcoma rarely, if ever, spreads anywhere except to the lungs, and perhaps other bones.

Not to mention that considering it stated in the book Augustus had only been in remission for about a year, he should've been getting routine check-ups close to monthly. If the cancer came back, doctors would've been able to catch it before it even spread. /endrant

What's the strangest thing you've ever experienced before (just from life in general)?

When I was 7, I was at a public pool and I saw a rock at the bottom of it. Naturally, I swam down to get it and throw it out of the water. But when I picked it up, it fell apart. Want to know why? It wasn't a rock. It was a piece of shit.

Who shits in a public pool?

I watched my big sister go through the same ordeal with Osteosarcoma. First it was the leg, then the lungs. Despite spending 5 of her 14 years with this disease, she really didn't let it define her. I know that's the standard bullshit people say about sick and disabled people, but for her it was true. Around the time of her death I read Hemingway's "A Farewell to Arms." Towards the end of the novel he writes "The world breaks everyone and afterward some are strong in the broken places." It seems that you have become strong in your broken places.

The cancer definitely took a toll on my parents as well. It was an early lesson for me that, despite appearing to be in control, my parents were just as helpless as me.

Also, coming from an Agnostic/Atheist, don't let the whole "If there was a God he wouldn't allow me to suffer like this" keep you away from looking at religion forever. When I was your age I pretty much believed the same. While I still don't believe in God, I think spiritual belief (or lack thereof) requires constant revaluation.

Anyway I don't know why I felt compelled to tell you this. Good luck with your remission.

Question: What is the first thing you will do when you're cancer free?

Party. hurrdurr

Thank you. When I'm cancer-free, the first thing I will do is want to go to school. See my friends, because I haven't been able to very often due to my weak immune system. Maybe party. Lol.

That's a mighty fine looking leg zipper. Do you use it to store weapons of any kind?

Follow up question, If you were stranded on a desert island, what kind do desert would it be?

Ha. No. I assume you're talking about the scar?

Uh, hard question. I don't know, a really hot desert?

OP, throwaway here.

First, I'm sorry you went through that horribleness. The reason this is a throwaway is that I've had a double lung transplant (CF) and the requisite chest tubes and catheter, and don't want the internet to know. Petty, I know :/

I've got to be re-opened up as well, and (assuming you have had them before), do catheters get better and less painful as time goes on?

Sorry to tell you this, but no, not really. I've only had a chest tube once, and that was after the lung surgery. I had three drains in my leg after that surgery, but a drain is much different than a chest tube.

The chest tube hurt way worse. I had to have mine in for about a week, because the fluid building up in my lungs didn't want to go away. I know your pain, though. It hurts just to take too deep of a breath with those things, and the removal hurts, too.

Congrats! As a stage IV sarcoma fighter myself you give me hope! In the process of changing treatment, may I ask what chemo were you on? Right up there with surgeries too, coming up to number 10 in a couple weeks. Best of luck to you!

I was on doxorubicen, methotrexate, and Cisplatin. :) The doxorubicen was the worst for me. It gave me mouth sores so bad I couldn't even swallow, and it made my counts so low that I got sick almost everytime I had it.

With all of the procedures and hospitalizations and whatnot, are you still attending school or did you have to drop out?

No, I'm no longer attending school. I'm participating in the homebound program, which is where a teacher will come to your house will all the necessary stuff and work with you on it. I'm still doing everything my friends are, just at home instead of school.

Hopefully, I'll be able to go to school by next year, though. :)

If the cancer were to disappear completely tomorrow and never return, are there any long-term complications you would still be facing?

Yes. I am still unable to walk without a walker or crutches due to the leg surgery. I can't bend my left knee more than 48° at the max because of this as well. I also have nerve damage in my knee, so it feels very, very weird if you touch it.

I can't wait for your next post to read "I am a 13-Year-Old Stage IV Osteosarcoma SURVIVOR. AMA!"

So I follow the rules, how do you find having something so severe happening to you at such a young age has affected your views on life?

It's that anything can happen to anyone, at anytime, in life. Most people my age think they're invincible. They're not. No one is. Facing my own mortality has made me realize that, much earlier than I would have liked to.

Life is a fragile thing is what it's made me realize.

How did you find out you had cancer in the first place? Was the tumor visible, or did you just have pain? Did it start all at once or was it more gradual?

I just had pain. It started all at once and didn't stop until I started chemo.

how would you describe the pain? What did it feel like? and how bad 1-10?

6/10 wouldn't do again. It got worse at night. It was a throbby, achey kind of pain.

is there something or someone that has helped you get through this emotionally? how have they done this?

Not that many people actually helped with this, because they didn't understand. I wanted someone my actual age I could talk to, who has been through almost the same thing as me. I couldn't get that, though.

There was a social worker at the hospital that helped, although she pried a bit too much and constantly pestered my family and I about my feelings. :/ I could only speak to her when I was hospitalized, though.

Hey, this is a little late to the game but hopefully you see it. I am currently getting my PhD and my research focus is on osteosarcoma. I wanted to take a moment to thank you and your fellow patients for donating tissue, blood, and time to help us work for better cures. It blows my mind that, considering what you are going through, most OS patients participate in research! Thank you!! As a question, what ways would you like to see research improved (ie communication)? Good luck with your fight.

I would like more focus on making things better, not just helping with the pain. For example, the mouth ulcers caused by chemo? You have Magic Mouthwash for that, which helps ease the pain for temporary amounts of time, but nothing to actually fix it.

I just wanted to remark on how strong you are and how incredibly grateful I am to modern medicine that they were able to give a well spoken, intelligent 13 year old so much more time on this earth. Best wishes.

What are your hobbies and are you looking forward to any new ones once you are in remission?

My hobbies are writing, reading, drawing, and playing video games. I'll be looking forward to doing sports whenever I gain my mobility back. Basketball and volleyball, to be specific.

That huge scar - I assume you still have a femur? If not, what did they put back in?

I do, but it's not "my" femur. My femur was entirely dead, and diseased, so of course I couldn't keep it. They put in a cadaver bone.

Is there any concern that the cadaver bone won't grow at the same rate as the rest of your body?

No, because during surgery they stunted my growth. They took out the growth plates in both legs. I'm 5'4", which is average height for a woman, so that was fine with me.

It's so cool how they now replace the bone with an implant. In high school a friend of mine had a tumour in his left thigh. The only option at the time was amputation and chemo. It seemed such a waste to lose the whole leg because the femur was bad.

How well does the implant work for you?

It actually works quite well. Of course, I haven't fully adjusted to it yet. I can't bend my knee past 48° at the max, and I can't balance myself enough to walk without support, like crutches. I have to attend routine physical therapy sessions, which are extremely painful. :/

I'm an illustrator, and a mother to 3 boys. My heart sank when I read your story, but I felt glad to hear you are in remission now. I've spent months with my twins in the hospital, so I can imagine how stressful and taxing it must have been on you and your family.

I have a question for you about education, if you don't mind. You are well spoken, so I guess education is very important to you. I'm an illustrator, currently employed for an educational publisher. Our publisher has been looking into the online schooling of children with a chronic disease, cancer, or children who cannot go to school due to a disability. Goal ages 6-14. They are working on an online platform, where teachers can post homework and grade students online. It's not limited to that, students who are unable to attend school can make an 'avatar' that can run around in an online world, part MMO, part school. Another included option is life-streaming the classes, during which you can ask questions directly to your teacher or classmates. This requires an installment inside the classroom which allows life-streaming / contact between the teacher/class and student. This set up allows the student to choose when to follow classes, so they can make their own schedule depending on their medical needs.

You are currently working with a homebound teacher, which is a good solution to keep up with school, and is something different entirely, but would you prefer to be able to connect with your classmates and friends digitally? Would you prefer to learn via lifestream if at all possible? Or do you have no preference when it comes to the subject?

(Apologies for my rather poor english :)). But I would love to hear your opinion on this online platform idea.

I don't really have a preference. However, that sounds like a great idea. I might consider it.

What is the toughest experience you have had to go through related to your illness?

Getting sick every other week. I don't mean just chemo-sick, I mean sick as in running a fever over 100.4 and just feeling like a general lousy piece of shit. That required me to be hospitalized and given intravenous antibiotics.

My most recent endeavor was having C-Diff, the RSV virus, pneumonia, and oral mucositis at the same time. It sucked. Hard. :/

Do you have your parents permission to be in here?

Ha. No. They don't care what sites I get on. I could make a PornHub account and they wouldn't even notice.

Why are you on reddit?

Because Reddit has some of the funniest and coolest people on it I've ever met.

First of all, simple question.How are you today?

Secondly, what do you do for fun? Are you a dude or a gal? Have you discovered porn yet? How is your life in school? Do you have a crash?

What comic book movie are you most looking forward to?

Spawn, Batman VS Superman or Avengers?

For fun, I enjoy writing, reading, swimming (when I can), and playing video games like The Elder Scrolls V: Skyrim. I'm a girl. Yep, I've discovered porn. Maybe I watch it, maybe I don't. I haven't been able to go to school.

What's a crash? I want to see Avengers: Age of Ultron.

how did this affect you socially? did you find yourself alienated by others your age at all?

thanks for the AMA as well, good luck friend!

Socially, it affected me quite bad. I was very alienated. None of my friends know what I've been through. A lot of them aren't familiar with being around another person their age with a life-threatening disease.

One friend even asked me if the cancer was contagious ...

Hello, I came across this and am thrilled that you're so close to beating this thing. My girlfriend's brother fought this for two years but unfortunately he's no longer with us. He was the bravest kid I have ever met and refused any special treatment from those around him. After his passing three weeks ago we vowed to keep in touch with those who were battling pediatric cancer. We have a Facebook page that most of our family would follow and we would like to follow your story as well. If there is a donation page set up or somewhere to follow your story, please pm me the details. If you want to look him up just search for "Team Jovi Jovan". He was my hero and his was batman. Who is your superhero?

Okay. I'm going to follow it. :) My favorite superhero is either Hawkeye or Iron Man.

At least you'll have some sweet scars. If you had a turban and it was flavored, what flavor would it be?

It would taste like 5-star fettuccine alfredo. I have rather eccentric tastes. I love Italian food.

When my cousin got osteosarcoma everyone was hovering over her for anything they could do for her which seemed to frustrate her.

My brother and I still treated her the same. Telling her to "shut up" or moving her walker (amputated leg) across and she was ok with that. She still called us jerks though.

Did all the over attention get to you as well? Did you just want to be treated the same as before?

Yes! I definitely wanted to be treated the same way as before. Ever since I was diagnosed, my mum slept with me in a chair, in my room, in case I "needed anything." Luckily, she will be returning to her room soon, though. I can't stay up late with her as my roommate. :(

I appreciate the sentiment, of course, but it gets irritating aftet awhile.

What chemo or combination of treatment finally worked for you? Also, if you're comfortable sharing this information, which cancer treatment center do you use?

We lost my little sister to osteosarcoma four years ago. It sounds like yours had the primary and metastasized the same route hers did. I'm interested to know how the medicine has advanced since then.

I am so proud of you for powering through this. You will go on to do amazing things with your life!

Well, the chemotherapy I've been receiving is methotrexate, doxorubicen, and Cisplatin. The treatment center was the Vanderbilt Children's Hospital, Monroe Carell Jr., in Nashville, TN.

what's the thing you hated most?

Being hospitalized. So. Damn. Boring.

If you were 100% fit and healthy, what would you do today, tomorrow and plan to do next week? (I wish you a safe and speedy recovery btw)

I would enjoy to go sledding right now. There's almost 2 feet of snow at my house. Snowball fights are fun, too. And iceskating. Yep, I would probably be doing that if I could.

Have you ever tried cannabis or considered to try it?

No. Is that even legal? My brother used to smoke illegal substances, so I doubt my parents would ever let me smoke anything.

Did they find it after a fracture from sports?

Nope. I just suddenly started having pain and swelling in my leg. I hadn't fallen or anything, so I didn't know why, and went to the doctor and well, yep.

Do you think you've fully processed what you've gone through, since it's all happened so quickly? Was there any magical thinking initially that maybe it would just go away? I can't imagine entering that kind of world when your previous biggest medical problem was probably the flu. I suppose it's definitely taken a huge toll on you, but I think you're coping pretty impressively given it all.

Also, what's the best and worst thing about the hospital that someone who's never had a long stay wouldn't know?

Initially, yes, there was some magical thinking that somehow it would all just go away. I remember thinking, maybe this chemo will get all the cancer, and I won't HAVE to have surgery. Nope. Didn't happen.

Best thing: all the nice people. Worst thing: the nurses wake you up when you're trying to sleep becausw they have to get your vital signs, take you down for X-Rays, change the stuff going into the IV, etc. Annoying.

How did you find out about your cancer? What symptoms?

There weren't many symptoms. Really, I was at Dollywood one day and suddenly, after riding a couple rollercoasters, my leg started hurting. I began limping. I complained about it, and so my mum decided to take me to the doctor when we got home.

The doctor did an X-Ray. A day later he called me in for an MRI, saying he suspected some kind of cancer.

Most cancers, I think, don't really have symptoms until they're advanced.

Favourite tv show at the moment?

Rob Dyrdek's Fantasy Factory.

Thank you for doing this AMA. I can't imagine how hard of a battle this must be for you, you are so strong and mature. I am glad you are doing this, you deserve the support and good thoughts of reddit! Instead of asking what the hardest part is- if you've already been asked I'm sure you don't want to talk about it- I'll ask what has been the most educational (or maybe even positive?) thing for you throughout this experience, if there is one?

If not, what's your favorite animal?!?

Good luck and stay strong!

Well, I've learned a lot of medical stuff, mostly about cancer, chemo, etc. That's probably the most educational things.

My favorite animal is a giraffe.

So glad to hear you're doing well. I'm a current medical student and just learned about osteosarcoma today -- we were told it affects adolescents around the knee with early metastasis to lungs... so your case sounds pretty textbook! From all your experiences in the hospital, what have been some of your best interactions with doctors? What about worst? Any advice to future doctors? Congratulations again on coming so far already.

Edit: also curious how you discovered you had cancer. Was this caught at a well-visit to your GP or did you go because something seemed wrong? Sorry for all the questions. :)

Some of my best interactions with a doctor will probably be with the person who did my lung surgery. He is letting ME decide when they will operate on the right lung, because he wants to only operate after I have fully recovered from my most recent lung surgery, and only I will know when I've fully recovered.

Some of the worst has been with those who don't know how to access portacaths. PLEASE read up on how to do that, or else you will be inflicting unnecessary suffering on oncology patients with their shitty veins.

My advice: read up on portacaths. Let the patient decide some things, even if it's a small decision. They will appreciate it.

Hey! Fellow cancer survivor here. Also a fellow atheist. Thanks for sharing your story. I just wanted to say that I'm really glad you decided not to take your life. I'm not going to be so asinine as to suggest that I know what you are going through - or went through - but I can tell you that even when everything seems like it's going to shit, most of the time, things change and get better. Sometimes it's your circumstances that improve, but sometimes it's just your perspective and/or attitude that changes. Somehow, that can make a huge difference. So here's my question for you: What are you looking forward to right now? Or, given the chance, what would you like to be planning to do as a fun experience, or just something that you really want to do?

I ask, because it's what always keeps me sane. Having something that I'm really looking forward to...

For my Make-A-Wish, I'm going to be going to California. That'll be sometime this summer. Very exciting. I'm looking way forward to it.

Any special destination in Cali? I really like a lot of places in California. San Francisco is my number 2 favorite city that I have visited so far. San Diego is awesome, too. I really enjoy the beauty of nature, so Big Sur, Lake Tahoe, Yosemite, and the giant redwood forests are all really special to me. I learned to scuba dive a few years ago and I like doing that with my son. He was 15 when we took lessons together. We have since done over 100 dives together in some really cool places.

San Francisco is one of the places, as well as San Diego, Hollywood, and Disneyland.

This may be stupid and I do apologize. Anything positive about this nightmare? You have an incredible amount of courage.

Well .... Er, I did an essay contest at one point about my cancer and got 3rd place. That's positive, right? Lol, I got $125 and a trophy.

Was it a cool trophy?

It was.

Morbid curiosity from an orthopedic engineer, but whose implants (manufacturer) are you wearing? It is a big fashion week with the Oscars and all ;-)

I honestly have no idea. Would tell you if I could.

What's your favourite subject at school, and what place would you like to visit most?

Oh yeah, and if you're ever lonely or bored or something and you want to chat with another teenager, shoot me a PM =)

My favorite subject is biology. I would really like to visit Italy.

Will do. Thanks. :)

What part of biology do you like? I'm currently studying animal behaviour and I'm getting ready to present my thesis. I need to be able to explain things to non-experts and I'm looking for people to practice my presentation on. If you ever want to hear a twenty minute spiel on personality in honey bees, I'd love to entertain you for a bit and answer any of your bee related questions.... (Feel free to turn this down or ignore me. I know this is weird; I'm just in crazed thesis mode...)

I like ecology the most. I also enjoy learning about microorganisms and parasites and stuff. :P

Hey, medical scientist here. We're told never to discuss results in front of a patient. Mostly because to us in the sciences cases like yours are really rare and interesting. I'm wondering, do you, as a patient, get offended by this interest?

Not really. Rare things are supposed to be interesting, aren't they? I'm interested in it myself, but of course, this is coming from the point of view of a patient, not a medical professional. I would prefer to know the results, though.

As a parent , I have wondered how much other parents include their children when fighting/dealing with an illness and disease as serious as yours. Do you feel like your parents include you in conversations with doctors, are truthful and open to discussing treatment options or do they try to 'shelter' you from that?

They're very open. They don't shelter me at all, even though sometimes I would prefer that, lol. Like, for example, I didn't want to know what my prognosis was - well, they told me anyways.

Hey, I have osteosarcoma, too! Great to hear you're doing alright, this stuff sucks. I was diagnosed in 2013, and will hopefully be heading up to a clinical trial in Bethesda, MD soon. So did your doctor say you were close to remission? I've had 9 surgeries so far because mine keeps spreading all around, so even when we've gotten it down to just one spot, it still has grown again, which sucks. And may I ask about the near death experience? I've had a few myself and was wondering if they were similar. Did it involve low blood pressure and a few nights in the ICU or ER?

I am close to remission, yes. Hopefully by next month it will all be gone. :)

The near-death experience had to do with being on the operating table. It was when I was having the lung surgery. They accidentally hit a major blood vessel in my lungs and had to transfuse 4, almost 5 units of blood. I was in the ICU for a few days afterwards, until they could be sure I was OK.

While breezing through the threads I saw this and read it too quickly. I thought you were some sort of martial arts fighter of some sort and I immediately gained a ton of respect for you. As soon as I noticed my mistake, I gained even more respect for you. Oh, I suppose I have to ask a question too! Do you like chocolate milk?

Ha. I wish I was a martial arts fighter. That would be so cool.

I don't like chocolate milk. I don't like any kind of milk. :P

I am sorry for your suffering-but just imagine the story you will be able to teach others with if you survive. Do you like pie? If so carry on and...eat more pie.

Actually, no, haha. I don't like pie.

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It's to always be honest with them. Don't sugarcoat anything. If they're young, tell their diagnosis, prognosis, etc. to them with terms they will understand. Always explain in detal what you are going to do to them, and how it will help them.

Are you familiar with Zach Sobiech?

Not to be a downer, but he died. But, he did so rather notably.

I haven't heard of him, but I'll look him up.

What hospital are you associated with?

Monroe Carell Jr in Nashville, TN. It's the Vanderbilt Children's. I love it. They have a Taco Bell, Subway, Pizza Hut, and a Ben & Jerry's in the cafeteria.

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I have no idea, but I will be very happy to find out when I'm done with all this cancer business.