Tag Archive for: rare pediatric cancer

Big Heroes Come In Small Packages

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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

Beer = Community Cheer!

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Community is our future.  When our community comes together, that’s when a difference is truly made. Community is everything.  People.  Businesses.  Families.  Organizations.  We all become one.  Together.  NoDa Brewing Company, a 2018 ISF Sustaining Sponsor, sets the example.

NoDa Brewing Company always strives to bring the highest quality beer to our community.  But even more than that, they strive to make a difference in our community.

  • You Drink, We Donate.  NoDa Brewing Company supports over 100+ charities throughout the year, and one way they do this is by donating $1 per pint every Monday.
  • Fundraising for Free.  NoDa allows nonprofits to host fundraising events for free in their tap room. Drink a beer and learn about how you can give back! 
  • Beer Bonus.  NoDa also opens their hearts by featuring special beers that continuously give back to specific charities.  Pssst . . . . have you tried the NoDa Margarita Gose that benefits ISF?  

“Todd and I have four kids and cannot even begin to imagine what it would be like to have one of them, or our granddaughter, get diagnosed with cancer.  We’re happy to do anything we can to support families that are battling this terrible disease and hopefully finding a cure one day.” – Suzie Ford, Founder and President NoDa Brewing Company

So we say CHEERS to NoDa Brewing Company!  Beer = Community Cheer!

An Army of Support

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Emily and Kevin know firsthand the impact an army of support can provide a family during a crisis. Their daughter, Claire, was 19 months old when she was diagnosed with Stage 4 neuroblastoma in 2011. They received an incredible outpouring of support and wanted to do the same for other families fighting childhood cancer. So they created Claire’s Army to honor Claire – who passed away in January 2012 – and to continue her legacy of her love for others.

Claire

“Our friends, family, employers, strangers and the hospital teams did so much for us during Claire’s treatments and our time of grief,” said Emily. “We wanted to do for others what others did for us.”

Through Emily and Kevin’s grief counseling at KinderMourn, time spent with other hospital families and discussions with medical providers, they realized that not everyone had support when going through a similar situation. This led to creating the following core programs at Claire’s Army:

CLAIRE PACKAGES: Claire’s Army provides a package to a new family facing a childhood cancer diagnosis at Novant Health Hemby Children’s Hospital and at Atrium Health’s Levine Children’s Hospital. The Claire Package utility tote includes towels, a journal, a gas card and additional comfort items. Valued at $150, the package helps make a family’s hospital stay more comfortable and saves them a trip to the store.

MEAL PROGRAM: Claire’s Army has several restaurant partners and a team of volunteers to deliver made-to-order meals to families at Hemby Children’s Hospital five nights a week. Their goal is to expand to Levine Children’s Hospital in the near future. Since starting this program in February 2014, Claire’s Army has delivered 4,000 meals, which offset a financial burden, provide options beyond hospital food and foster family time.

EMERGENCY ASSISTANCE PROGRAM: Claire’s Army works through oncology social workers to pay for bills to help families who are suffering financially. Emergency assistance can range from mortgage/rent payments, utilities and travel needs to insurance. In one case, Claire’s Army was able to purchase an airline ticket at the last minute for a grandmother to fly roundtrip from El Salvador to attend her grandson’s funeral service. To date, the organization has provided nearly $30,000 of emergency assistance through this program.

“We want to be able to help in any way we can and to make an already awful situation suck less,” said Emily who also spent a few years as a nurse assistant at Hemby Children’s Hospital. “As a hospital provider, it was heartbreaking to see what families go through during a diagnosis, especially if the family was alone with no other support.”

Claire’s Army hosts an annual gala – which raised $200,000 this year – and other fundraisers throughout the year. Funds support these core programs, as well as pediatric cancer research through nonprofits like the Isabella Santos Foundation.

“Claire’s life was very brief, but very impactful,” added Emily. “We hope that the work we are doing is an extension of our love for her and her love for others. We want to carry that on and help these families one at time.”

Awareness… What a Bullsh*t Word

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Originally published on HuffPost, written by Erin Santos

(Written and published 5 years ago, this article is the perfect reminder of why we refer to September as Childhood Cancer ACTION month)

a·ware·ness
noun

1. knowledge or perception of a situation or fact.
“we need to raise public awareness of the issue”
2. synonyms: consciousness, recognition, realization

September is Childhood Cancer Awareness Month, and as I sat eating dinner with my family the other night, I told my husband, Stuart, that I should write something for this month of awareness. I blurted out, “Awareness. What a bullsh*t word. That word is the problem.” And just like that, this blog post was born.

I’m sure the word “awareness” comes from back in the day, when no one spoke of cancer. The “C” word, as it was called. People died quietly. Very rarely was a child with cancer even seen. Probably because there were no real treatments for them, so they died so quickly. Even 20 years ago, they were barely saving one child who was diagnosed with neuroblastoma, we were told at our consultation with Memorial Sloan Kettering Cancer Center. Hell, we were told that our daughter, Isabella, wouldn’t have survived her brain relapse if it had occurred just three years earlier. Isabella would have been dead 9 months after her initial diagnosis. There wouldn’t even have been enough time for me to get her story out to you. So, awareness month was a good thing back then… hey, meet this little 3-year-old with cancer… Nope, wait.. She’s already gone.

But now, times are changing. These kids are fighting harder and longer. Their stories are getting out there because the chemo drugs are not curing kids, but they are extending their lives. People ARE aware of them. Awareness of pediatric cancer is out there. But now we are getting stalled because the movement is not moving.

Here is what a typical pediatric cancer month looks like: You “like” a couple of Facebook posts about childhood cancer or maybe even “share” one. You think about signing up for a childhood cancer 5k, but your life is busy, so you don’t get around to it. You take your kids to soccer practice and do homework and have drinks with girlfriends and go to work and church and read People magazine to catch up on your favorite celebrities and see how short Lindsay Lohan’s shorts were in NYC the other day… “Oh, no she didn’t,” you say. And then, you are running errands in late September and start noticing the city turning pink and think, I need to schedule that mammogram.

Then it is October 1.

Did you know that the 2012 cost of government elections was more than 6.2 billion dollars? Did you know that in 2012, the cost to RE-ELECT the SAME president was estimated to be 2.6 billion dollars? That is something you should be aware of. Because in 2012, we spent less that 10 percent of that 2 billion dollars funding childhood cancer research, or less that 5 percent of the 6 billion-dollar-cost of 2012 government elections. And just 4 percent of the total cancer funding goes to pediatric cancer. Also scary to think about, 60 percent of all funding for drug development for adult cancers comes from pharmaceutical companies. What is the percentage of funding for drug development from pharmaceutical companies for childhood cancer research? Almost zero. Why? Because children’s cancer drugs aren’t profitable. Ouch.

There is some awareness for ya!

2013-09-04-Isabella_Santos.jpgSo, back to my issue with this “awareness” word. The movement I want to start is this… Let’s maybe change what your September looks like. Print a picture of my daughter. Tape it to the back of the doors in your house. That’s right, the front door and the back door. Every time you walk out the door, take a look at her.

She died in my bed on a Thursday morning around 9:30 while her little brother was at camp at the YMCA. She was 7 years old. She died about 80 years early. She also died because she ran out of treatment options. She died because her cancer has very little funding and her drugs aren’t profitable.

Look at her picture when you walk out the door for your awareness. “Awareness.” Check. But then, when you get in your car to take the kids to school, go to work, go to the gym… think about something you can do that is ACTION. Forget awareness. September is Childhood Cancer “ACTION” Month. Do something that day that is action to save a child’s life. Sign up for race, make a donation, research what is really going on, ask your friends to help, talk about it, have a lemonade stand, write your congressmen, help a family who has a child with cancer. Can’t think of something to do for 30 days? Email me, I’ll help you with your list.

Cancer is an epidemic in this country and I’m confused as to why people aren’t freaking out more than they are. Probably because they don’t have it… yet. Or maybe because we are all so “aware” of cancer, but aren’t taking action against it. Maybe we are all waiting for the future of cancer. In the new Matt Damon movie, Elysium, set in an imagined future, a quick scan on your body just “SNAP,” gets rid of it. The truth is, that is not even a remote possibility in your lifetime.

Every day I’m aware. I’m aware that she’s no longer with me. I’m aware that my 3-year-old daughter, Sophia, is inside coloring a picture for her right now. I’m aware that Isabella should be in the third grade this year. I’m aware that my husband lives in fear that he will never be able to love his children as much as he loved her. I’m aware that my 6-year-old, Grant, has nightmares about her. I’m aware that every day for the rest of my life I’m going to feel like there is something missing. I’m aware of a lot. So, the word “awareness” works really well for me in my life. Describe my life in one word, actually, and it’s probably “awareness.”

So, let’s not make this month about just liking a Facebook e-card about cancer or reading a family’s caringbridge entry and then walking away. Let’s all admit that awareness is just a legacy, bullsh*t word and lets all commit to making this month about action. Action saves lives, awareness does not.

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TURN YOUR AWARENESS INTO ACTION:

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