Tell me about what the condition was when you first found out about it? How did you feel?
I have Osteosarcoma. It’s pretty rare but someone in my family used to have it, a distant cousin. It started out with knee pain, so I went to a doctor and then I was told I had to see a specialist where they found a tumor so I was sent over to CHOP, Children’s Hospital of Philadelphia. That’s when they did the biopsy and we found out, and it was… hard. We didn’t know what they were saying, it could have been Lyme’s disease or multiple things, we were just very confused, and then I went through six rounds of chemo.
This is all at 12 years old?
Yeah, all in 7th grade. That’s also when I had my major surgery.
Were you playing sports at that point?
Yes, I danced, I was a few years in actually. But then I had the surgery to take the tumor out, they put in the prosthetic, which goes from my thigh to my ankle. Recovering after that was really hard. A week after the surgery, maybe two, I was back in six rounds of chemo, which was really challenging. I ended up having to skip all of 7th grade and do a lot of summer school, catching up was a struggle too. There was a lot of physical therapy, rehab at the time in the hospital.
What’s going on now that causes you new strains and challenges?
For five years, the prosthetic was really good, but then last summer it started to not bend as well. I was in a lot of pain. We went back to the surgeon and he said everything looked good and was confused by my pain, but now it’s just lost it’s “bend.” Physical Therapy (PT) is helping me get it back, and it’s working but it’s just not what it used to be. It was a pretty new surgery, especially when I first got it so it might just be one of the side effects.
How has it impacted your lifestyle recently?
Even after surgery, I used to go on walks and hike a lot, it was one of the only things I could do for exercise. But now, it just hurts too much. Even walking around school, I have a limp and you can see people looking. It’s just the social aspect. There are a lot more doctor’s visits now because they’re trying to figure out what’s wrong exactly. It’s been a lot financially, especially since insurance didn’t cover the brace I need to wear every night.
How much more out of pocket has it cost you recently?
I’m not really sure, but my guess is a few thousand. The problem is there’s no end in sight because no one knows what the future holds. I don’t know how much more PT I’ll need; possibly even new surgery to see if these plastic pieces may not be right or something.
I understand you’re also currently in college?
Yeah, I’m currently at Raritan Valley community college. Last semester I had to withdraw from a few classes with everything going on, but I’m trying to do the nursing program. I think right around when I started going through more pain and seeing more doctors, I decided I want to do nursing specializing in probably pediatric, maybe oncology.
You seem very upbeat, very positive, have you always had such a great outlook?
Yeah, a lot of people say that. I’m pretty good at staying positive especially because I had to.
If you had to do it all over again, is there anything you’d do differently or tell someone else who might experience the same diagnosis?
I’ve actually been able to talk to a few people that went through osteosarcoma; it was a few years ago so I don’t know if I was fully ready, but I got very into the social aspect and was terrified by my hair loss, and stuff like that. I always wore a hat and should have embraced it. I was without hair for about two years, starting high school with it really short, and I remember how upset I was, but I shouldn’t have been. Besides that, I believe I’ve stayed pretty positive and I think that’s something everyone should keep in mind, because you will get through it. I’d just want to warn them that it can take a really long time to get back to normal, but it does happen. My life came back to normal pretty quickly, even with my current setback, and now I don’t even remember the time before my surgery, it’s just a part of me. You change a lot through your daily routine that you don’t even think about. Driving was a big deal for me and I won’t forget my mom bugging me, “make sure you watch and are careful,” “make sure you don’t trip,” just little things like that. I broke my ankle once because of the crutches.
It sounds like this has really led to who you are and made you stronger.
Yeah, definitely. At the time it was just something I knew I had to do and get over.
Looking forward, you’re still waiting to see what’s going to happen with additional costs that are being put on you and I know Colleges is an additional financial burden. Anything else you see that’s costly?
My family is actually in the middle of a divorce so they have been handling that financial stress, especially on top of the doctor’s bills.
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