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Through My Eyes: Behind the Mind of a Teenager Fighting Cancer & Social Anxiety

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.

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.

Now What? 

“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?

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All photos/videos courtesy of Nicholas’ Mom, Jennifer Haag.

*** THROUGH MY EYES: THIS IS CHILDHOOD CANCER SERIES

9/2: We Have Stopped Making You Aware

9/3: Through My Eyes: This is Childhood Cancer 

9/3: Through My Eyes: What Cancer Leaves Behind

9/4: Through My Eyes: Day In the Life Of Kellie Andrew, Warrior Mom Fighting to Save Her Child From Neuroblastoma

9/5: Through My Eyes: Behind the Scenes with Aaron Plummer, Dad to RhabdomyosarcomaWarrior

9/6: Through My Eyes: What My Child About Cancer, What Really Scares This Cancer Mom

9/8: Through My Eyes: Week 1 Results

Big Accomplishments for this Little Cancer Warrior

Over the past year, Madison was in the deep throes of battling osteosarcoma, a rare pediatric bone cancer.  In that same year, Madison, now age 6, learned to walk again, completed kindergarten, stole the heart of Duff Goldman from Kids Baking Championship and most importantly, beat cancer. 

That’s a big list of accomplishments for one little girl.

In 2018, over the course of 3 short days, Madison’s life swiftly changed. It all started with pain in her right leg and completely lost the ability to walk a few days later.  After immediately heading in for X-rays after what thought was a possible broken bone, a soft spot was found on her right femur. Immediately taken to Levine Children’s Hospital, Madison was later diagnosed with osteosarcoma in April of 2018 at five years old.  This type of cancer is extremely rare and almost unheard of in kids her age The solid tumor discovered took up to about three-fourths of Madison’s adolescent bone.

After several rounds of chemotherapy to shrink the tumor on her femur, she had surgery to remove her right femur and replace it with one from a cadaver. Fortunately, the medical team was able to remove most of the tumor and save both of Madison’s growth plates.

In February 2019, she finished treatment at Levine Children’s and has since had very positive scans showing no cancer! At about the same time of finishing treatment, Madison learned her Wish trip would be granted by Make-A-Wish Central & Western North Carolina Chapter.

Madison and her family just got back from her Make-A-Wish trip to Los Angeles.  She didn’t ask to meet Taylor Swift or go to Disney World. She wished to meet Duff Goldman, a silly and bald baker. And what happened? They became best friends of course! 

“Duff Goldman by far is the most genuine person alive. Duff and Madison hit it off immediately and she didn’t ever want to leave. One of the sweetest moments was when they got in a mini food fight. Duff covered her chef jacket with chocolate and jam, said you can’t trust a chef with a clean jacket. Madison never wants to wash it!” 

Madison and her family enjoyed baking time with Duff, exploring Universal Studios, riding in limos and exploring some of California’s yummy eats. “To think where we were a year ago. The whole trip was surreal. We made some pretty awesome memories that we will never forget, none of us will ever be the same.”

And that’s what Make-A-Wish does, they create life-changing wishes for children with critical illnesses. The positive impact wishes give to kids and their families are invaluable.

For the second year, the Isabella Santos Foundation ran an online March fundraiser in honor of what would have been Isabella’s birthday month, that fundraiser directly impacted Madison’s wish trip.  Make-A-Wish granted Isabella her wish and gave her the best days of her life as well as giving her family the best memories of theirs. Honoring Isabella’s birthday by providing the same for another cancer fighter is exactly what she would love!  

Thank you for supporting the Isabella Santos Foundation, we can’t express enough how much your support inspires us to do more for these cancer warriors and their families. You helped make a little girl’s dream come true and it will be something that will stay with her forever. 

Photos of Madison’s Wish Trip:

A Baking Wish Trip of a Lifetime

Madison is headed to L.A. to bake with Duff Goldman of Kids Baking Championship and you helped make that happen!  Remember Isabella’s Birthday Wish Fundraiser in March? Well, we love when things come around full circle.  The timing was just right when we gifted $6,000 to the Make-A-Wish Foundation to go towards a child’s wish… Madison’s wish!  

Isabella and Madison have so many similarities and baking is one of them!  To be able to use Isabella’s birthday fundraiser to help send Madison off on this baking wish trip is crazy!  It gives us goosebumps!  6 1/2 years ago Isabella was given the opportunity to bake cupcakes at Magnolia Bakery while in New York City for scans.  On this day her parents learned that Isabella’s cancer had spread to her brain.  Although her story did not have a happy ending, we work passionately every day to help other kids fighting cancer live out the happy endings they deserve.  And we appreciate you helping us do that in Isabella’s name.  

This morning we were able to attend Madison’s Wish Party at CPCC’s Culinary Arts Center.  Talk about kicking the week off right! We had the best time watching Madison and her sister, Riley, create pastries and pinwheels.  We visited with her family, the Make-A-Wish team and enjoyed watching her Wish Grantors, Peanut Butter & Shelly, smile among them.  Madison and her family head off to L.A. in 2 weeks and we can’t wait to share details and photos from their trip!  It’s beyond cool to be able to share the stories and show you the impact of your donations!

Madison was diagnosed with osteosarcoma in April of 2018 at five years old. She finished treatment at Levine Children’s in February 2019 and has since had very positive scans showing no cancer!  This brave girl has come such a long way in a very short period of time and is currently working hard to be off her walker and use her leg.  She has so much to look forward to! Read Madison’s Full Story

Fighting Pediatric Cancer: Madison’s Story

Madison & her Care Team

After almost a year ago of being diagnosed with osteosarcoma, a rare pediatric bone cancer, Madison received the news she has been fighting so hard to hear at her 3 months scan yesterday from Dr. Oesterheld. SHE BEAT CANCER. Madison will continue to have maintenance scans and therapy on her leg, but was able to ‘Ring the Bell’ at Levine Children’s Hospital signifying the end of her treatment and beginning of living life cancer-free!

After several rounds of chemotherapy in 2018 to shrink the tumor on her femur, she had surgery to remove her right femur and replace it with one from a cadaver. Fortunately, the medical team was able to remove most of the tumor and save both of Madison’s growth plates. If you are familiar with Madison’s story (posted below), you will remember her parents promised her a puppy to help motivate her to learn to walk again.  And just a few weeks ago Oakley, a black Goldendoodle, came home with her!

Madison & Meredith, Program Director at Levine’s Seacrest Studios

Madison was full of giggles and smiles all afternoon. Here she is pictured with some of her Levine Care Team who she adores! And with Meredith, Levine’s Seacrest Studios Coordinator, who naturally showed up in a unicorn onesie to celebrate.  We don’t want to miss giving Dr. Oesterheld credit for wearing pink and unicorn socks for the occasion!  Levine’s Doctors, Nurses, Child Life Specialists, Staff… and yes dancing Seacrest Studios Unicorns are simply the best. The. Very. Best.

Madison has so much to look forward to as her family just learned she gets her Make-A-Wish trip to L.A. to visit Duff Goldman of Kids Baking Championship.  How cool would it be to say… ‘I hung out with Duff’.  ‘I baked a cake with Duff’. ‘Yup, Duff and I are BFFs.’  We are beyond excited for this little baker and can’t wait to see more from their trip.

Congratulations Madison, we are so proud of all your hard work and determination! And thank you to everyone at Levine’s for everything you do for Madison and other kids fighting cancer!  

Congratulations Madison, we are so proud of all your hard work and determination! And thank you to everyone at Levine’s for everything you do for kids fighting cancer!  

MADISON’S STORY (Recorded September 2018)

BIG HEROES COME IN SMALL PACKAGES  (Blog post published October 2018)

Madison and mom Laura

Madison was diagnosed in April of 2018 with osteosarcoma at age five. After several rounds of chemotherapy to shrink the tumor on her femur, she had surgery to remove her right femur and replace it with one from a cadaver. Fortunately, the medical team was able to remove most of the tumor and save both of Madison’s growth plates. She continues to receive chemotherapy and recover from her surgery. Once Madison gets the green light from her doctors to be more mobile, she is determined to learn to walk again so she can earn a super cute bribe from her parents – a Golden Retriever puppy. 

A Community of Support

Madison and her family live two hours from Charlotte in Scotland County. She and her mom make the drive each week to Atrium Health’s Levine Children’s Hospital where Madison receives in-patient treatment Thursday-Saturday. They then return home for four days to be with their family – Madison’s dad, Michael, and big sister, Riley – and where Laura teaches three days a week. 

“Madison’s diagnosis has changed us all,” says Laura. “Michael and I have to raise each of our daughters as single parents during the days when we are in Charlotte for treatment. The hardest part is not being together under the same roof. We are very grateful for the great friends we have made through this journey. You realize you can’t do this alone so you learn to rely on support from others.”

Team Madison

For the remainder of the year, Madison will be homebound where she loves to cook, bake, do crafts and make “how-to” videos on her mom’s phone. When she finishes chemo in December, she’ll resume her favorite activities including dance classes, swimming and learning how to ride her bike.

Chef Madison

In January, she will start kindergarten at the school where Laura teaches and where they already have a tremendous community of support. Faculty and students have created “Team Madison” in honor of Madison for the American Cancer Society’s Relay For Life of Scotland County. Laura and Madison stay busy supporting the team. It all started with their Levine Children’s Hospital life coach bringing them some beads to make necklaces and bracelets. From there, Laura and Madison started making “Madison’s Hope Rope” key chains that they give to patients at Levine Children’s Hospital and sell to raise funds for their Relay For Life team and other cancer organizations. 

“Madison is our hero and is such an inspiration,” says Laura. “She’s such a good kid and is all about wanting to help other people. Even though she’s five, she’s changing people’s lives.”

Madison and sister Riley

Big Heroes Come In Small Packages

Madison and mom Laura

*UPDATE 2/25: After almost a year ago of being diagnosed with osteosarcoma, a rare pediatric cancer, Madison received the news she has been fighting so hard for at her 3 months scan. She beat cancer. She will continue to have maintenance scans and therapy on her leg, but was able to ‘Ring the Bell’ at Levine Children’s Hospital signifying the end of her treatment and beginning of living life cancer free!

Oh, and she got a puppy! Oakley, a black Goldendoodle!

Madison was diagnosed this past April with osteosarcoma at age five. After several rounds of chemotherapy to shrink the tumor on her femur, she had surgery to remove her right femur and replace it with one from a cadaver. Fortunately, the medical team was able to remove most of the tumor and save both of Madison’s growth plates. She continues to receive chemotherapy and recover from her surgery. Once Madison gets the green light from her doctors to be more mobile, she is determined to learn to walk again so she can earn a super cute bribe from her parents – a Golden Retriever puppy. 

A Community of Support

Madison and her family live two hours from Charlotte in Scotland County. She and her mom make the drive each week to Atrium Health’s Levine Children’s Hospital where Madison receives in-patient treatment Thursday-Saturday. They then return home for four days to be with their family – Madison’s dad, Michael, and big sister, Riley – and where Laura teaches three days a week. 

“Madison’s diagnosis has changed us all,” says Laura. “Michael and I have to raise each of our daughters as single parents during the days when we are in Charlotte for treatment. The hardest part is not being together under the same roof. We are very grateful for the great friends we have made through this journey. You realize you can’t do this alone so you learn to rely on support from others.”

Chef Madison

Team Madison

For the remainder of the year, Madison will be homebound where she loves to cook, bake, do crafts and make “how-to” videos on her mom’s phone. When she finishes chemo in December, she’ll resume her favorite activities including: dance classes, swimming and learning how to ride her bike.

In January, she will start kindergarten at the school where Laura teaches and where they already have a tremendous community of support. Faculty and students have created “Team Madison” in honor of Madison for the American Cancer Society’s Relay For Life of Scotland County. Laura and Madison stay busy supporting the team. It all started with their Levine Children’s Hospital life coach bringing them some beads to make necklaces and bracelets. From there, Laura and Madison started making “Madison’s Hope Rope” key chains that they give to patients at Levine Children’s Hospital and sell to raise funds for their Relay For Life team and other cancer organizations. 

“Madison is our hero and is such an inspiration,” says Laura. “She’s such a good kid and is all about wanting to help other people. Even though she’s five, she’s changing people’s lives.”

Madison and sister Riley