Through My Eyes is a series in which those affected by childhood cancer share a behind-the-scenes look into what it’s like to be in their shoes. Read every perspective. Become aware and donate to help create solutions for kids fighting rare pediatric cancer.
- Perspective: Cancer Teen
- Name: Nicholas Haag, 17 yrs-old
- Cancer: Stage 4 Osteosarcoma, relapsed
- Diagnosed: 2016 at 13 years old. Dec 2018 relapased in hip & lungs
- Treated At: Levine Children’s Hospital
- Feels: Terrified & Exhausted
Nicholas was featured on our social channels (Instagram & Facebook) on 9/9/19 to share what it’s like being a teen with Asperger Syndrome fighting cancer. It’s real and it’s raw… just like childhood cancer.
UPDATE, JUNE 23, 2020: Nicholas lost his fight to osteosarcoma. What a unique, smart, resilient and funny young man Nicholas was and we feel extremely fortunate to have gotten know him.
My Name is Nicholas and I have stage 4 osteosarcoma. Oh, and Asperger Syndrome. That too.
“How does it feel being a teenager fighting both cancer and a social anxiety disorder? Terrifying and exhausting. After I was diagnosed with cancer, I didn’t feel the effects immediately. But they were certainly profound when I returned to school. I was never the type to have panic attacks before, but I certainly did when I returned. They were bad, especially in the hospital environment – and while that’s cooled down some… I still get panic attacks. Especially in situations when my counts are low.
Panic attacks are strange. You’re convinced something is wrong with you. And the physical symptoms are similar to if something is actually wrong with you. It becomes reasonable in your mind to connect the two. Even though I’ve become better at recognizing them, they are still a pain in the ass and are frightening to actually experience.
For awhile I couldn’t purchase something at the store because I felt unfamiliar with everything – for worry I might screw up. I don’t really know sometimes what I’m supposed to do socially, I’ve slowly learned. Americans do tend to just hit up conversation…that makes me anxious.
Being diagnosed with cancer has made me a more paranoid person when it comes to my health – and I did pretty much everything possible to limit my cancer risk. A more anxious one too. Upon seeing something that I would see as triggering, there was no stopping my anxiety, and sometimes it would just spike up randomly.
Uncertainty of Cancer
“Nosebleeds. Often, some platelets will solve this, but oftentimes close to my nadir my nose will bleed and sometimes uncontrollably. Last week was among the worst nosebleeds I’ve ever had and had to be admitted, inpatient. I got home around 2am. It’s these trips that can cause me the most anxiety and stress because it’s not a scheduled thing. The uncertainty of what’s going to happen makes me anxious. So can you imagine what the uncertainty of cancer does to me?
It sucks going in for chemo two weeks out of four. Plenty frustrating since this has been my schedule for the better part of this year. And yet it’s kinda unpredictable since you can’t guarantee certainties on the schedule.”
Mom’s Heart Breaks
“We were packed for the beach with the kids and my mom in the car, ready to go. I thought his lump on his leg could have been a torn ligament or something that might need a brace. My husband passed out when he heard the news. My heart hurt so much for my child. I have not been to the beach since, and I don’t think I ever want to go again.
The thing that makes me the proudest of Nicholas is his amazing resilience of spirit. He doesn’t stop fighting and he keeps on going, even when it’s so hard for him. He also maintains compassion and caring for others while going through something so hard. He is there for his friends when they are going through hard times. It’s so amazing that he still has empathy for others.” – Jennifer, Nicholas’ Mom
Searching for the Light at the End of the Tunnel
Nicholoas has turned his love of train travel into a way to cope with his cancer. A way to map out visually the next step forward. A way to show him how far he has come and a way to keep him focused on searching for the light at the end of the tunnel.
“My road map is more of a train map. I used to be into trains a lot. Living in England – where there is much better rail travel than in America – I took trains for the hell of it sometimes. Spotting and riding the different types have been definitely fun to me even today. I studied the rail map of London to the point I can still tell you where to go without looking at it. So we created a small poster modeled off the London Underground District Line – the line I would use to get home in London – and put markers for how far along I was.
England has always felt more my spiritual home. Something about it screams out to me as particularly homey and I always felt more at home in the UK than I do in the US. Despite being American I have visited the UK consistently and it’s almost become therapeutic – having a chance to go back to my home away from home.”
Day-To-Day Life Changed
“Walking even a slight amount of distance makes me tired… and it’s painful. As someone who doesn’t have a car and took public transport to get to school, even before this relapse – it was hard. And just when I thought physically I was starting to recover, I got rediagnosed. And here I am again.”
Nicholas had a knee replacement in 2016. In just a few weeks, he will be undergoing surgery for a hip replacement to replace his pelvic bone where the disease is located. Both replacements are with metal. Nicholas will have to learn how to walk all over again.
“This might not even be the end. Realistically, it could feasibly happen again and this could be a recurring thing throughout my life. That’s the toughest thought, knowing “yes, I can get through this one, now what?” You never stop dealing with cancer but it’s different from actually having it in you.
I’ve always wanted to travel across the world. There are so many places I want to visit. I hope to visit Asia post-surgery. I hope to sort of live the most “normal” life I can after this. I hope I can finish the early college program at CPCC and that by that time, I could have enough credits to nearly earn my college degree.”
17 years old. Terrified. Exhausted. On his second time around the cancer block, Nicholas speaks out on what it’s like being a teenager fighting cancer struggling with Asperger Syndrome. This stage 4 osteosarcoma warrior had the courage to step out of his comfort zone to publicly talk about his anxiety. We hope you will take time to read his perspective. It’s real. It’s raw… just like childhood cancer. Are you aware now?
All photos/videos courtesy of Nicholas’ Mom, Jennifer Haag.
*** THROUGH MY EYES: THIS IS CHILDHOOD CANCER SERIES