Big Heroes Come In Small Packages

Madison and mom Laura

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

Ethen’s Fight…Update

A few weeks ago, Ethen’s parents received the best news – his scans showed no traces of cancer.

Ethen

In early April 2017, Ethen was diagnosed with Stage 4 High Risk Neuroblastoma at 13 months old. After five rounds of chemo, Ethen had surgery to remove the remainder of the tumor in his abdomen and chest. He then had a stem cell transplant, 2½ weeks of radiation, and began antibody therapy. He made it through two out of five rounds of treatment in the hospital.

The third round of therapy was very difficult and landed him in the PICU, so he had to stop antibody therapy immediately. Ethen’s condition worsened considerably and his family was uncertain what would happen to him. After receiving a trial drug that had been tested to counteract the side effects that Ethen encountered, his body responded and he began his road to recovery. This antibody therapy for Ethen was a landmark case in neuroblastoma research in improving survival rates, but it is still a treatment that is terribly painful for patients.

“This is why more research is needed and why we support research funding going to the hospital,” said Christie. “We have been very encouraged by the Isabella Santos Foundation funding the Rare & Solid Tumor Program at Levine Children’s Hospital. The amazing care provided by LCH with ISF’s impact is significant for patients and families, and will lead to better cancer research.”

After a challenging road, Ethen has recovered and is now on a trial drug for the next two years to prevent a relapse. He has come a long way since his diagnosis. Now 2 ½ years old, Ethen loves playing with his two older siblings, building towers, doing crafts, putting his imagination to good use, being silly and making people laugh.

“We are so thankful to have the entirety of Ethen’s treatment at Levine Children’s Hospital. The team went beyond providing excellent medical care by also caring for my family,” said Christie. “When a child is going through cancer, the entire family is impacted and the siblings become silent warriors, which is why the care and support we all received at the hospital was so invaluable. It really makes a difference for families.”

Stay updated through this Ethen’s Fight Facebook page where his parents post updates via their blog.

Ethen’s Fight… To Write His Own Story

Contributed by Wheela Sunstrom

If a two-year-old were capable of writing his story, what would he say?  Would he tell you his favorite colors? Would he reveal his favorite food? Would he describe his favorite outfit, his favorite toy, his favorite hobbies, his favorite book? Would he tell you he loves his brother and sister, and also his mommy and daddy?  The answer is a resounding YES.  He’d tell you all of those things, and probably much more.   But a diagnosis of Stage 4 neuroblastoma at only 18 months old changes all of that. If Ethen could put tiny pen to paper, his version would answer things like: Who is your favorite doctor? Do you have a favorite nurse?  What does it feel like to have cancer? Does chemo hurt? What about radiation What about the tests, the tumor surgery, the catheter,  the stem cell and bone marrow transplants, the antibody treatments, the intubation and the ventilators?   Are you afraid?  Do you love your brother and sister, and also your mommy and daddy?

Eighteen months.  Less time on Earth than a mobile phone contract.  Far too young to have to answer some of those questions. Too young to be burdened with these weighty concepts, to need the strength and knowledge of a superhero battling one of the cruelest villains in life.  And yet, a small superhero body does what it knows to do:  Fight.  His mom finds the silver lining:  It’s all he knows. It’s unfortunate, but it’s easier in a way. For Ethen’s family, this became all they knew too, the “new norm.”  Conversations and celebrations alike revolve around cancer. His parents fall just as easily into discussions about his diagnosis, his treatments, and his prognosis as they do the weather.  “Did you see that new show on tv?” seamlessly transitions to, “What are your worst fears?”

And those big, gigantic fears frequently have to take a backseat, sandwiched between milestones like birthday parties and learning new words. Because a diagnosis stalls you at first, then launches you onto an unfamiliar freeway, dumping you into a chaotic traffic jam of Wait-and-See with sporadic moments of Move, Now!  There’s often no time to consider anything else but what’s right in front of and around you. You begrudgingly tighten your seatbelt, then sit.

Most people see their lives in increments of extended time: 3 months. 6 months. A year. Families with a neuroblastoma diagnosis tend to have a very different range:  3 weeks.  6 days. An hour. Forget about family vacations and playdates. You’ll find those in the trunk, buried under the What Ifs.

There are also happy moments he would sprinkle throughout this tale.  An attention-loving, silly two-year-old would definitely say something about the fun things, the brighter things. Giggle fits, kissing attacks, successful steps, relieved anxieties. The new extended family made up by doctors and nurses and staff and supporters and other patients who provide a familiar comfort. These once-strangers who make the good days wonderful and the bad days less bad. After all, Ethen has become their child too.  They are all on the same ride, all wanting the same thing.

The ultimate goal? Kids like Ethen get to write their stories, their way. Without intubation and ventilators and antibody treatments and transplants and surgeries and tests and chemo. They get to spend more than half of the year somewhere besides a hospital, celebrating milestones. Independent, affectionate Ethen would tell about his favorite cereal, his favorite toy,  his favorite Mickey socks, his favorite bear, and his favorite book. The story wouldn’t revolve around cancer. Down the road, he’d share the experience of losing his first tooth: Did it hurt? Was he afraid? He’d definitely talk about the fun things, the brighter things.  And he’d certainly say he loves his brother and sister, and also his mommy and daddy.

This is why we do what we do. Because these are the stories children should be telling – the stories they want to tell –  not the ones they have been forced to tell.  Our mission to help shape these narratives is clear, and we won’t stop until they are all happily-ever-afters.

His favorite colors are blue and yellow, by the way.

UPDATES ON ETHEN’S FIGHT

Kicking Out Cancer

Sometimes we come across a young adult that stops us in our tracks. And reminds us of how incredibly amazing kids are. This time it was Matthew Pennington who stopped us and made our hearts smile.

Matthew Pennington took part in Leadership Martial Arts’ Kicking Out Cancer event yesterday. The event raised a total of $5,200 benefiting ISF! Matthew won for most money raised and was presented with a autographed Carolina Panthers football. Matthew immediately donated the football back to ISF for us to use in our auction to raise more money. Gestures like these always gets us, especially when they come from kids. We learned that when Matthew was 10 years old, he lost his father to cancer. He started going to Leadership Martial Arts as a positive outlet after loosing his father. We love that he turned his pain into passion.

This is giving back. This is making a difference.

Grace donated her birthday money, she didn’t want other kids getting as sick as Isabella. Jackson joined Isabella’s Dream Team at 11 years old as the youngest member to help fund raise. Griffin, Riley, and Noah redeemed 5 year’s worth of arcade tickets for a Yeti cooler just to donate it back to our annual auction. Juliana wears purple every September in honor of Isabella, helping her high school every single year with their annual ‘Purple Out’. Blake saved every penny of her summer earnings at 7 years old to help ISF. We could go on and on about the incredible kids we have come across. And they all have reminded us of Isabella… who used to donate her birthday presents to the pediatric oncology clinic. Kids amaze us.

Giving back is important on all levels. All ages. Thank you Matthew for your passion. We were honored to spend the day with you yesterday.

Ethen’s Fight

xxx
May 23rd Update:
NO TRACE OF CANCER. Ethen had scans last week… and they were clear. 💜
XXX
April 29th Update:
“Tonight we put sprinkles in the pancakes and lit some candles to celebrate this little guy finishing his protocol for Stage 4 High Risk Neuroblastoma (and please forgive the cheesy singing). In many ways it feels anti-climactic – no ringing of a bell, no bubble parade from nurses – just the five of us who have walked through this storm together. In fact, he will actually get his last dose of accutane as he sleeps tonight and has no idea what any of this means. But he loves candles and pancakes and singing and his people. Tomorrow morning we meet with a research team to discuss his next two years of treatment on a clinical trial that will hopefully start in a month. It doesn’t ever really end and we have learned in this new “world” that nothing is ever certain. So we will celebrate every victory, kiss his head a thousand times a day, and accept every snuggle we can. And we rejoice that this strong kid has survived this past year and is thriving right now. (See the video at the end to see what he finally decided to do last Sunday to melt our hearts – the kid is confident to walk almost anywhere now!)  “Ethen’s Mom
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April 6th Update:

“A year ago today we sat in “the 8 room” of floor 11 at Levine Children’s Hospital and heard the final diagnosis of Stage 4 High Risk Neuroblastoma. The team had prepared us so well to hear it and even so that lengthy discussion filled the room with an immense weight and tension. I remember exactly where Dr O sat and that he spoke with just the right combination of frankness and compassion, but the rest of it is a blur in my memory. I heard words and categories that took me months to understand, but what I did understand was that all of what he said meant this was the bad kind, the aggressive kind, the kind that had already moved to other areas of my child’s body. By that point Ethen was already becoming unrecognizable in look and behavior due to fluids, pain medication and effects of multiple lengthy anesthesias over the week prior. Three days later he would be in the PICU. We knew our child was sick. So when Dr O said we should start chemo that afternoon, we were fully on board.

Today Ethen is here and playing, and as you will see in the post below, he is doing much more. The song my husband posted on the blog is perfect. We are so grateful for today and are seeking to trust in the days ahead no matter what comes.”  -Ethen’s Mom

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March 2nd Update:
This sweet and silly cancer fighter turns 2 today! Please help us wish Ethen Happy Birthday. Ethen’s mom says that Ethen is “full of silly and fully aware of how to get someone’s attention and be ridiculous.” Ethen is still doing well and getting strong each day. He is currently continuing his Accutane treatment, which can make him act a little funky at times. But he is making it through!
 XXX
February 9th Update:

Positive news on this peanut to kick off Friday. Ethen went back home earlier this week and is doing very well after taking a big turn in the right direction. Ethen’s mom mentioned to me that the support they have felt is remarkable. Keep praying and lifting their family up. We appreciate our supporters and what they can do for our community and beyond!

Although Ethen will not be doing any more antibody treatment, he will continue on Accutane treatment followed by scans to check for relapse prior to scheduling surgery to remove his Hickman line and G-tube. Then Their hope is to be able to enroll him in a DFMO test trial. If you remember, DFMO was part of a trial in which you helped us fund starting out of Michigan. Results and ease of of the drug on patients have been incredible.

 xx
February 5th Update:
Happy to update that Ethen is starting to return to his silly self. With slight improvements since we last posted, the medical team extubated Ethen last Monday. By Wednesday, the PICU team had weaned Ethen’s oxygen and pain medication enough that they felt comfortable releasing him from PICU to the oncology floor. The medical team continues to monitor his oxygen as well as Ethen’s weight. Ethen’s parents have decided to not undergo any further antibody treatment due to the life-threatening effects it had on the little guy.
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January 23rd:
We want to introduce you to Ethen, a pediatric cancer fighter from North Charlotte, who is in need of lots of thoughts and prayers. Ethen was diagnosed with stage 4 neuroblastoma in April of last year at 18 months old. In the past 10 months, he has endured many rounds of chemo, a major tumor resection surgery, 1 bone marrow transplant, radiation, and 2 rounds of antibody treatment. That’s a lot on a little body.
 
Last week, Ethen started his 3rd round of antibody treatment. Ethen developed capillary leak syndrome, which affects his breathing. Due to respiratory distress, Ethen had to be intubated and rely on a ventilator. He has also developed cytokine-release syndrome, which is another side effect of antibody therapy.
 
Ethen’s lungs have been considerably damaged so it will take time to repair. The fluid and inflammation have reduced his lung volume and functionality. Throughout the last several days, Ethen has taken steps forward and then some steps back. After removing his breathing tube, the medical team had to intubate him again and put him on a oscillator.
 
For those looking outside in and have not personally experienced a child’s fight with cancer… one would think you receive chemo and it makes you sick. When the reality is the impact of adult-like treatments are extremely difficult on little bodies like Ethens’. A child’s body has to fight really hard to deal with various cancer treatments; therefore, not only do they have side effects during the treatment, but forced to face continuous life complications due to the harshness of the treatments on top of that.
 
Please help us lift Ethen and his family up. Being so dialed into Isabella’s care and near her family… I can attest that it makes a difference. The family can feel it. We will continue to share Ethen’s progress. You can also stay updated through his Ethen’s Fight  Facebook page where his parents post updates via their blog.
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