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Asking Others to Give Back For My Birthday

It’s Erin, Isabella’s Mommy… today is my birthday. Each year, I try to act like my birthday isn’t that big of a deal, but for those of you who really know me… it is. In years past it has really been a celebration that lasted well over 10 days. There were private celebrations, lunch celebrations, a girl’s trip, some kind of romantic thing – I loved it all. Maybe it is because there aren’t many times throughout the year where I feel comfortable celebrating myself. Mother’s Day? Forget about it. Christmas? I pride myself on being a great gift giver and love that. So… my birthday is the one day that I can and that is all me.

Some people have birthdays that are during the best times of the year. One of my friends has a Cinco de Mayo birthday… um, I want this. My birthday , on the flipside, is the WORST time of year. February 2nd. Groundhog Day. Also, often times falls on SuperBowl, which is hands down the worst birthday for a woman – ever. So maybe this is why I take the day on and try to make it my own.
But now that I’m a grown adult, I don’t anticipate the birthday for the gifts that I’m going to get. I don’t have that pair of shoes on the wish list for months, waiting for this day so I can unwrap them in a fancy restaurant. These days, I buy absolutely ridiculous shoes like most women – when I can’t afford them, on a bad day of work. But… it is never a regret.

So, at the ripe (and I mean ripe) old age of 43, I chose to do the responsible thing ask others to give back. The death of Madison Fedak over the holidays shook me. Like, rattled me to the core. I kept my distance from her for a long time because she reminded me so much of Isabella. Her look, her demeanor, the way that she interacted with Rachel, even the way that Sophia became so drawn to her. Then she went into remission. I let my guard down because I felt like it became safer. This little girl was going to make it and she could be one of those stories I was so happy to be a small part of.

Then, she relapsed. As a parent of a child with rare cancer, relapses aren’t good. All this work we do, all this money we try to raise… and I’m watching it take one of my favorite people I have met since Isabella died. I remember texting her Mom, while crying and apologizing that we didn’t do something fast enough for her. It was that helpless feeling all over again. This family would speak at our events and drive two hours from their hometown, if we asked, and in the end – it felt like it was all for nothing, because the dreaded story ended the same way. To be honest, I began to question what we were really accomplishing here at ISF.

But, a couple of weeks after her death, I finally had the strength to write a letter to her mom. This is a horrible club that we belong to. But sometimes, someone is sent to us and then taken away. And way too soon. But in their absence, change is made. Isabella was one of those kids, and Madison is another. While I know this doesn’t make the loss any different for her parents, I know that it will over time.

So instead of buying (those overly expensive and way too impractical shoes that seem so “fun”,) I’m asking for donations in honor of Madison. Because she is one of the reasons we are doing what we are doing here at ISF and because she was one of those kids. There was something really special and I want to honor her because she truly was so much like Isabella. That is truly the best birthday gift I can think of. We selected an Osteosarcoma trial in her honor and it’s so much more important than these shoes. Best part, it’s crazy easy to do these birthday fundraisers. Facebook targets you right around your special day and ASKS you if you want to create a charity fundraiser for your birthday. I saw it and thought, “Hell yes.”. A couple of easy clicks later, I set a goal and clicked “share”. The first night I raised over $500. I woke up to donations and smiled because I realized that maybe this is the birthday present we should all give ourselves.

…But. I’ll eventually get the shoes too. 😉

My Facebook Fundraiser

In Honor of You, DJM

Madison, I wish I could be naming all your new stuffed animals with you right now, so instead I just bought a flamingo and unicorn Squishmallow that I can hold every night. 

Madison was the kind of person that people meet once and are immediately connected to. She was a kid that impacted more in her 7 years than some people do in a lifetime. She had the sweetest voice you have ever heard. What I would do to hear, “Ms. Meredith, I love you”  just one more time.

Then I think about Laura (ironically my mom’s name), Riley (ironically my middle name), and Mickey who are the most loving, giving, selfless, and determined family I ever met in Charlotte. The kind of family I would want to have one day. How could this happen to them? 

It doesn’t make sense and we will never stop missing you, but we are taking action for you and your family. I’m on the ISF board and will be part of the team focusing on raising funds for osteosarcoma trials. We are going to make sure that we find a cure for kids like you with rare pediatric cancers — all in honor of you, DJ M. 🎶  

We used to dance to “How Far I’ll Go” from Moana every time she came into Seacrest Studios (we got some pretty incredible moves I must say so). A pretty perfect song for both of us, because there are no limits to how far I’ll go to fight for you and to find a cure for osteosarcoma. #TeamMadison and #TeamISF are behind you forever. 

Together we can help kids Beat Cancer, Grow Hair, and Live Their Dreams.

Love,

Meredith, ISF Board Member

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.

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.

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?

DONATE NOW

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

 

Osteosarcoma Warrior Bakes with Duff

DECEMBER, 2019 UPDATE: Madison Fedak passed away from Osteosarcoma on December 21, 2019 at 7 years old. Thank you Madison for your zest for life and for inspiring all of us at the foundation. We only wish we could have done enough in time to help save your life. You will forever be in our hearts as we push forward in your honor.

SEPTEMBER, 2019 UPDATE: Madison and her family learned that her cancer returned when a tumor was found in her lungs.

JULY 2019: 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