National Siblings Day

April 10 is National Siblings Day, observed to honor the bonds between brothers and sisters. According to its founder, “Siblings Day follows the spirit of Mother’s and Father’s Day, an uplifting celebration honoring people who have helped in our development and who have shaped our values, beliefs and ideals.”

Every day this week on this page we’ll be sharing sibling stories of confronting childhood cancer. These incredible interviews span several generations and many emotions. We hope you’ll check back all week to read – and maybe even share – each one.

And we hope you’ll consider making a donation today to fund lifesaving childhood cancer research through Jeff Gordon Children’s Foundation to honor the special bond between brothers and sisters.

“Our brothers and sisters are there with us from the dawn of our personal stories to the inevitable dusk.” – Susan Scarf Merrell

Today's story: The Baucoms

“…invisible scars instead of visible ones.”

We first met Ethen the day we announced our charitable commitment establishing a $2 million endowed chair in support of academic and research efforts at Levine Children’s Hospital in 2017. He was only 13 months old and had just been diagnosed with Stage 4 High Risk Neuroblastoma, a cancer that develops from immature nerve cells found in several areas of the body. We couldn’t get enough of his sweet bald head and big blue eyes, his cuteness could be amplified only by the company of his equally adorable siblings – brother Hudson and sister Mikayla. We thank their parents Christie and Brian for helping share their story.

We told Hudson and Mikayla that their brother was sick on the 12th floor play area outside at Levine Children’s Hospital after being there for about a week with Ethen. I think initially the most traumatic part of it all for them was the night we left for the ER with Ethen after they went to bed, and they woke up to find us gone and their Mimi there unexpectedly. By the time we talked to them about his diagnosis, they were probably ready for some type of explanation.

Hudson, 5 ½ at the time, seemed to take it in quietly and appeared sad. He asked a good number of questions. Mikayla was only 3 and so young that she listened some and then wandered around while we talked more to Hudson. After we spoke with them, a child life specialist came to the room and explained a little more.

“I felt bad when I found out Ethen was sick because I didn’t want him to be sick. When Ethen was sick, I was kind of concerned about him and I felt sad. I felt afraid that he would have to stay in the hospital for a lot.”

– Mikayla

At first, I don’t think either of them grasped the seriousness of Ethen’s illness. But over time as they watched him get sicker and realized that it would not end quickly, a weightiness settled over them.

After treatment Hudson finally expressed to us that he was scared a lot that Ethen was going to die. We had frequent honest conversations with them throughout treatment, and they would ask questions to learn as much as possible. Mikayla became fixated on the medical aspects and terms. They would often ask what happened to others they had heard about with cancer. This usually signaled to us that there were deeper fears than they were able to express.

We never told them about how serious it was when Ethen spent a few weeks in the PICU and actually was in danger of dying, but I clearly remember my heart breaking as I held Ethen’s hand and thought of what that conversation would feel like with Hudson and Mikayla if we had to have it.

“I felt sad and felt bad for Ethen. I felt afraid that he was going to die and I felt like that a lot. It felt bad to see him sick.”

– Hudson

Hudson became much more affectionate toward everyone, verbally and physically, but especially toward Ethen. He frequently declared him “his favorite person in the whole world.” They were both super careful around him.

Mikayla became our helper – she wanted to see and do everything. She would collect supplies for us for flushing lines, would sit calmly with Ethen through dressing changes, and would help us not forget certain steps or materials. She has also always been the one to make him laugh the most.

“I would tell other kids if their brother or sister is sick you’ve got to keep fighting cancer and don’t stop. And if they’re getting a treatment, you can give them a toy to play with.”

– Mikayla

“ I would give them a little money. And tell them to pray for your sibling to help them.”

– Hudson

The most difficult part was probably our separation as a family – in a year period, we spent almost 6 months of it at the hospital, and this doesn’t include all of the clinic trips, radiation treatments, and days spent for scans and procedures. The kids did not always have consistency, there were periods of time in which they didn’t see us (Mom and Dad) a lot, and they went on their own version of an emotional rollercoaster. Hudson already tended to be anxious, but this amplified it. Mikayla changed from being constantly independent to being more clingy and needy. They also gained a vocabulary and had concepts introduced into their lives that may have never entered otherwise at such a young age. Hudson used to say, “I never knew about cancer before I was 5, but now that I am 5 and a half, I know so much about it.” So with this knowledge came deeper fear and pain, and I believe they are just as much fighters as their brother, only now living with invisible scars instead of visible ones.

I think they both treasure Ethen more deeply than they might have otherwise as the third child. For example, it took them a long time afterwards before they would pick on him or be mean to him in “normal” sibling ways. They seem to have a deeper level of compassion for him in general and still help us remember his daily medications and encourage him in taking them. Hudson still declares Ethen to be his favorite and will write about him in school. Even today in a writing assignment, he wrote that the only way that his lunch could be better was if he was eating it with Ethen.

“I love to hug Ethen and kiss him. I like seeing him because it makes me happy.”

– Hudson

“I like to play with Ethen. We play kitchen and paint pictures together. I like to teach him how to say words and play pretend.”

– Mikayla

Hudson and Mikayla, we believe, have a deeper friendship and bond because of what they walked through together. They were the constant for one another. They definitely still fight like siblings, but they truly are best friends and understand each other more than anyone else. We pray that all three of our children will forever have a deeper bond and appreciation for each other and our family. We hope that they also will have genuine empathy for others walking through difficult times and will be quick to serve others in need. They already take great joy in making cards or putting things together for families or staff at the hospital, and Mikayla would give something to every kid at Levine if she was able to.

Ethen just turned 3 in March, Hudson is now 7 ½ and Mikayla is 5. Happily, Ethen completed his primary treatment protocol the end of April 2018 and currently has no evidence of disease. He began a clinical trial drug in May 2018 to hopefully prevent relapse and will remain on that clinical trial until May 2020.

“My brother had cancer and he fought it and now the cancer is gone. I feel good now. Things are great now because no one in our family has cancer.”

– Mikayla

“I felt bad having a sibling with cancer. I wish cancer would go away! Things are happy now because he doesn’t have cancer. We have a nice relationship. I always tell him ‘I love you.’ It is GREAT!”

– Hudson

This story brings us to the end of our tribute week honoring siblings everywhere, especially those facing childhood cancer together. We’ll leave you with Hudson and Mikayla’s sweet wishes for Ethen as he gets bigger and grows up (and we DARE you to tell us these three aren’t among the cutest kids you’ve ever laid eyes on!)…

“I hope he can play with me! And play video games with me as we get older. When he is an adult I want to play a sport with him. ”

– Hudson

“I hope that he will be kind and that he will find a good girl to get married to.”

– Mikayla

Give today to support underfunded childhood cancer research – the type of research that makes clinical trials like the one Ethen is on right now possible – so that siblings like Hudson and Mikayla can watch their wishes come true for their little brother.

Check back tomorrow to read the next story!

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Make a Difference

Founded in 1999 by four-time NASCAR Cup Series champion Jeff Gordon, his namesake foundation has granted more than $19 million to support children battling cancer – primarily through funding promising research. We look forward to a day when cancer is no longer the number one cause of death by disease for children. But until then, we hope you’ll join us in the race to beat it – because in this race, every child matters and every hour counts.

“To the outside world, we all grow old. But not to brothers and sisters. We know each other as we always were. We know each other’s hearts. We share private family jokes. We remember family feuds and secrets, family griefs and joys. We live outside the touch of time.”

– Clara Ortega    

Today's story: Meet Lila and Payne

"... she is stronger than I thought she was."

We met Lila and Payne in Scottsdale, AZ at the beginning of this year when she and her family agreed to be JGCF’s “childhood cancer ambassadors” at the renowned Barrett-Jackson auto auction. Lila rode in style with Jeff right onto the auction stage in his Z06 Corvette. But she later pointed out that this wasn’t her first ride in a sleek, black sportscar – she had already been taken for a spin in the Batmobile! (We think even Jeff was impressed.)

Here’s what Lila and her brother Payne had to say about childhood cancer:

JGCF: Lila, how old are you now and how old were you when you were diagnosed with cancer?

LILA: I turned 11 on March 24th, and I was diagnosed when I was 9.

JGCF: How much older are you than Lila, Payne?

PAYNE: I’m 13, we are two years apart.

JGCF: What cancer were you diagnosed with and what’s your current treatment status?

LILA: ALL leukemia – I'm in maintenance with one more year to go. If I follow the rules with the pills my cure rate is 95% so hopefully next March I will be done with treatment.

JGCF: Do you remember how your brother reacted when he first found out you had cancer?

LILA: He didn't know what to say, he was sad.

JGCF: Payne, do you remember how you felt when you learned Lila had cancer?

PAYNE: I was scared, I didn't know what that meant.

JGCF: Has being diagnosed with cancer and going through treatment changed how your see your brother?

LILA: Yes – my brother has been strong throughout my treatment. He also makes everyone laugh. Before I thought he was a goof but being able to laugh during treatments has helped me.

JGCF: Has Lila’s cancer diagnosis and treatment changed how your see your sister?

PAYNE: Yes – she is stronger than I thought she was.

JGCF: Has cancer changed your relationship with your brother?

LILA: I like him more. Most of the time, sometimes he is annoying.

JGCF: Has Lila’s cancer diagnosis changed your relationship with her?

PAYNE: Yes – we are closer, and I feel sorry for her sometimes. Except when she is annoying me.

JGCF: Do you think you having cancer is hard for your brother, Lila?

LILA: Yes – because he gets less attention than before. Sometimes he is stuck at home or at the hospital because I am sick, and he doesn't get to do things he wants to do.

JGCF: What’s it like for you to have a sister with cancer and what advice would you give other kids who have a sibling diagnosed with cancer?

PAYNE: I wish Lila never got cancer. It has changed not only her life but also my mom’s and dad's life. And I’d tell other kids to be supportive of them and your family. Try to make them laugh when you can. Also try to stay out of the way, and you have to do your own thing. That helps everyone out.

JGCF: If you were to tell your sister how you feel about her during this time in her life what would you say?

PAYNE: That I love her and hope she recovers fully so we never have to go through this again.

JGCF: If you were to tell your brother how you feel about him during this time in your life what would you say?

LILA: I am thankful for my brother – except when he is talking about video games, that's boring to me.

(Well, it’s nice to know that childhood cancer doesn’t change everything about sibling relationships…! 😉 )

Check out “Team Lila” at 1:22 of this Barrett-Jackson charity highlight reel – that was an incredible night for Jeff Gordon Children’s Foundation and a big win for childhood cancer research! We are so glad that Lila, Payne, and their parents Jennifer and Jim were there to share it with us.

https://www.barrett-jackson.com/Media/Home/Video/314369420

If this interview with Lila and her brother Payne resonated with you or brought to mind memories of your own sibling, we hope you’ll consider a donation today to help fund less toxic, more effective treatments for childhood cancer.

Look for Rion’s and Andy’s story next…

Today's story: This is Andy & Rion

"He wasn't fragile, he was a fighter."

It was a chilly evening when I shared a phone call with Rion (pronounced “Ryan”) Williams. But after speaking with her and hearing her talk about being the older sister to a kid fighting cancer, my soul was warmed by Rion’s resilience and strength.

“This can be hard for me to talk about, but I’m going to do my best to hold it together.”

JGCF first encountered Rion professionally. The graphic design and printing business where she works had been commissioned by the organization to produce a mailing. At the time, we didn’t know her then-teenage brother Andy was fighting Stage IV Glioblastoma (also known as GBM). GBM is a type of cancer that begins as a brain tumor, and according to the American Brain Tumor Association, GBM tumors often develop so rapidly that there are no warning symptoms prior to their discovery. This is the same cancer Senator John McCain fought.

“Prior to being diagnosed, he was a healthy person. He didn’t have any health problems, and the most medicine he had ever taken was a steroid for a poison ivy rash.”

Andy was diagnosed May 23, 2014 at the age of 17. At that time, the intelligent teen was gearing up for academic and athletic success during his senior year of high school. He was a talented baseball and football player with a witty personality – people loved to be around him. Especially his big sister Rion.

“We’re exactly 13 years, 3 months, and 16 days apart,” said Rion. Andy was the youngest of three; Nick was 3 years older than Andy and Rion 10 years older than Nick. Nick and Andy played sports together and maintained a close bond. The two often found themselves getting into mischief together – “they would fight or argue with each other and then get mad at someone else for arguing with their brother – they were thick as thieves.” Looking back on Andy’s fight is too painful for Nick, and he prefers to talk about it as little as possible.

Rion and I shared a laugh as she told me stories of the fun times the three had together. The age difference between she and the boys gave her a different type of sister role, but she enjoyed it nonetheless. “I would babysit them and take them places to do fun things,” Rion told me through a grin I couldn’t see but could hear in her voice. As she told me a story from Andy’s childhood, she held back laughter – Andy’s antics still give her a chuckle. “The boys and I were eating with my friend – the boys were still pretty young, I was still in high school – but we were eating together and Andy just all of a sudden stood up at the table holding the ketchup bottle.” As he slowly pointed the ketchup bottle at Rion’s friend she could see what he was thinking and told Andy NOT to do it. With a sly grin, Andy carefully aimed the ketchup bottle at Rion’s friend and squeezed with all his might, covering Rion’s friend with ketchup! Rion was mortified and Andy giggled, confirming that little brothers are the best at embarrassing big sisters.

“Andy had a contagious laugh. If he was laughing, everyone would laugh.”

While fighting cancer, Andy received the strongest possible dose of radiation he could receive for a few weeks along with chemotherapy. Through it all, Andy stayed on his football team and played any chance he got, fighting through the unbearable headaches that come with brain cancer. In the meantime, Rion proudly played her role as the caring big sister by keeping track of and attending appointments, organizing medical records and info, and helping Andy keep track of his medications.

I was heartbroken as Rion told me how difficult it is to hide the fear your sibling will die. Her voice got softer, “I couldn’t let him see me cry.” Andy didn’t want anyone around him to be sad, he didn’t want to be defined by cancer, and he didn’t want to be seen as sick. “He would tell me he could see it in people’s eyes – he could see them look at him like they felt bad for him,” Rion told me as she got choked up. The two were technically adults while Andy was fighting cancer, but Rion still saw the little brother she babysat during summers in high school and she wanted to help him anyway she could, as she had all her life.

“The hardest part is that you can’t fix them.”

Though Andy was once declared cancer free, December of 2015 came with bad news. His cancer had returned. At that point, he was 18 and had decided he would attend most of his visits alone. He didn’t want anyone to feel burdened by his medical situation and he never wanted people to make a fuss, Rion told me. “It was in December when he found out and told me,” she had to pause for a breath as tears returned. Through the phone, I could feel her mustering up strength to make it through this part of the story. She knew Andy had an appointment for an MRI that day in December. When he called and asked her to lunch, she hoped for the best but feared the worst. They sat across from each other, brother and sister, just like they had done many times before. Just like the time Andy giggled as he covered Rion’s teenage friend in ketchup. But this time Andy told his sister his cancer had returned. I, too, got choked up as she told me how difficult it was to hide how scared she was yet again – “we just decided, ok, let’s start looking for treatments, let’s start fighting it.’”

“He was resilient, strong, and determined to beat cancer.”

Through our call, I feel I got to know Andy a little. His sister described him in a way that only a sibling could. She told me about Andy’s best qualities and about his qualities that annoyed her. “Andy was quick. He could think of a comeback really fast. A few times he really got me.” She described Andy as honest, caring, genuine, warm, kind, loving, well-mannered, and compassionate. She told stories about him being a hospital patient who made doctors and nurses laugh as they all talked about football. She told stories of him laying in his own hospital bed concerned about how other patients were feeling and doing his best to make sure everyone around him was happy. Her stories showed me Andy was good to people and in turn people were good to him. Rion didn’t seem to realize that all of these same qualities applied to her as well. She was so focused on being a caring big sister even now that Andy has passed, she talked more about him than herself.

I laid down my pen and shared a quiet moment with Rion as she told me about their last Christmas together – Christmas of 2016. She told me a story I’m sure any sibling would like to forget. The morning of December 29th, Andy told his sister she should go get some rest after she had sat with him through the entire night. After she left the room, Andy passed away. He didn’t want his sister, who he loved so deeply, to see him go.

Rion made it clear her brother “wasn’t fragile, he was a fighter.” The same can be said for his big sister Rion.

Your donation today can ensure kids and their siblings aren’t fighting cancer alone. There is an enormous funding gap when it comes to cancer research for pediatric cancers. Only 4% of the National Cancer Institute’s funding supports childhood cancer research – most of the remaining funds are provided by people like you. Every gift makes a difference.

Hear from a child life specialist next…

Today's story: Insights from a Child Life Specialist

“…it is its own battle – and often an overlooked one.”

Fast friends after meeting at summer camp 25 years ago, Randi and Rachel couldn’t have imagined they’d both end up working to help kids fighting cancer. Randi at Jeff Gordon Children’s Foundation and Rachel as a Child Life Specialist. We asked Rachel to give us some insight into cancer and the sibling connection.

For those who don’t know, a Child Life Specialist is an integral part of most childhood cancer care teams. They are pediatric healthcare professionals who work with children and families in hospitals and other settings to help them cope with the challenges of hospitalization, illness, and disability. In addition to being a Certified Child Life Specialist (CCLS), many individuals hold certifications in grief counseling (CGC) and even have their Master’s degree in social work (MSW).

“We provide children with age-appropriate preparation for medical procedures, pain management and coping strategies, as well as play and self-expression activities. We also provide information, support, and guidance to parents, siblings, and other family members. We work with families from diagnosis through death.”

– Rachel MSW, CCLS, CGC

Siblings of kids fighting cancer fall into their own specific category. They watch their best friend from birth fight for their life, while at the same time deal with less time and attention from their parents. Their lives are thrown into immediate upheaval and disruption, often without a clear understanding of why. They also see their sick sibling getting more attention, presents and special treatment. If they aren’t being looked after by other family members then they are brought along to clinic appointments and hospital visits instead of doing things other kids their age are doing. But what can be most troubling is that they have their own set of worries about their sick sibling that they often try to hide from their parents so as to not add more stress. That’s A LOT for anyone to cope with – especially a kid.

“The hardest part of having a sibling with cancer differs for each child – for some it is the fear of losing their sibling, for some it is the lack of attention, and for others it is the life upheaval. Each sibling relationship is different. But it is its own battle – and often an overlooked one.”

– Rachel MSW, CCLS, CGC

Sadness, fear, anger, frustration, anxiety, and helplessness are some of the most common emotions that siblings of a child with cancer face. And this experience sticks with them forever. The long-term effects of the pent-up sadness, anger, worry, and more often come out either after the sick child has completed treatment or after he/she passes away. There is then a lot to unpack for the sibling in terms of processing their feelings and emotions from the time their sibling was sick.

“Many siblings go on to advocate for childhood cancer causes so that another child does not have to go through what they and their brother/sister went through.”

– Rachel MSW, CCLS, CGC

Not surprisingly, childhood cancer can impact a sibling relationship in both negative and positive ways. The bad: Sometimes the healthy sibling resents the sick sibling for all the attention, presents, and special treatment they get. Sometimes the healthy sibling feels "less than" the sick sibling, or even abandoned by the parents.

But the good: It often brings siblings closer together. They spend time together in a different way than healthy siblings do (e.g. hospital visits, more time at home, make a wish trips, and special outings) and they often develop a deep appreciation for one another based on this shared experience.

“I worked with a family who had a young child diagnosed with cancer. At the time, she had an older brother and an older sister. Over the years her family grew to be five children. They are the most supportive and engaged family. The siblings came to clinic appointments, to visit in the hospital, and to this day come to follow up appointments for the girl who had cancer. They were all so invested in her care and it was amazing to see.”

– Rachel MSW, CCLS, CGC

Siblings should be making memories on playgrounds not in clinics, and planning summer vacations not planning hospital visits. Your donation to fund vital childhood cancer research today will help brothers and sisters everywhere get to be just regular kids.

Look for Linda’s and Terry’s story next…

Today's story: Terry's and Linda's Story

“…life became a process of enjoying every moment possible while trying not to worry if that moment would be the last.”

Not long ago we received a gift from Linda in memory of her brother Terry, and as is customary we called to thank her and extend our sympathy on the loss of her brother. Admittedly, we were caught off guard when Linda graciously accepted our condolences but told us that she had lost her brother to childhood cancer nearly 60 years ago.

It was obvious from that first conversation with Linda that while more than half a century had passed since her brother’s death, the extreme sadness and heartache that comes with losing a sibling was still quite profound.

From the beginning, Terry was a “wild child,” according to his sister Linda. Their mother said Terry “fulfilled the terrible twos.” He was full of life, adventurous, and very energetic. Linda remembered some of Terry’s antics – “in one incident in particular he was riding his pedal car – a fire engine – down the hallway of our home and crashed right into our parents’ bedroom door! He left a hole!” Linda says the blonde haired, blue-eyed Terry was yet another example of the mischievous little brother we all know and love.

But Terry and his entire family soon faced a devastating diagnosis. Linda is unable to remember the specific type of cancer her brother had because so many years have passed, but she knows he had a brain tumor. “As soon as they learned what it was my mom told me Terry had cancer. I knew cancer was a bad thing. I cried and cried.”

In the summer of 1960, Terry returned home to his family after months of treatment at Children’s National in Washington, D.C. Doctors had done the very best they could for him but no one could predict how long he would live.

There were very few treatments for childhood cancer in 1960. The few that were available were considered experimental and often undertaken with a slim possibility of success. For Terry’s family, life became a process of enjoying every moment possible while trying not to worry if that moment would be the last.

Cancer eventually left Terry blind, but that didn’t stop him from spending time with his family. Linda recalled, “he memorized every book mom read to him, and although he was blind, if she made one mistake in the story, he corrected her!”

The confident, intelligent Terry courageously fought cancer as long as his 3-year-old body could, but on March 9, 1961, he lost his battle. The afternoon of his death, Linda and her siblings left school unaware of the sadness that would soon envelop them. When they saw how many cars were parked on the street near their house, they knew what had happened...their brother was gone.

At that time firemen drove ambulances, and Terry and Linda’s father was the fire chief. So when Linda’s mother called an ambulance for Terry, an entire community mourned. But no one more than Terry’s three young siblings.

Linda was 10 years old at the time of Terry’s funeral and still remembers being escorted to his tiny casket by her older sister and younger brother. Seeing 3-year-old Terry who was once so full of life now lying so still was so difficult that Linda doesn’t attend funerals to this day -- nearly 60 years later.

Her sister is unable to talk about Terry’s death and her brother avoids it as well. Linda shared that losing her brother has impacted her life in ways she cannot describe. And while time has provided some healing, it is evident she still feels his loss deeply.

Linda became an advocate for better treatments for childhood cancer in 1961 shortly after her brother’s death. That summer, her family hosted a community carnival as a fundraiser for cancer research. She and her family wanted to ensure that kids like Terry would have better outcomes.

She’s been racing to beat childhood cancer for nearly 60 years in honor of the special bond she shared with her brother – a bond that exists exclulsively between siblings.

We encourage you to join the race with Linda and Jeff Gordon Children’s Foundation. Even though treatments for pediatric cancer have come a long way since Terry’s battle in 1960, there’s still much further to go.

Look for The Baucom Family's story tomorrow...