Posts

Defining Support, The Cancer Mom Series: Kellie

In one split second, their world changed forever.   A scary and isolating job that no woman could ever prepare for.  Regardless of the type of cancer, the experience is long and difficult. Regardless of remissions, cures or unimaginable loss, cancer is part of their lives forever.  Their moments in life are now marked by haunting memories and inconceivable feelings.  Their family’s timeline is now marked by ‘before’ or ‘after cancer’. We are working during the month of May in honor of Cancer Moms everywhere, fighting for their kids. We will share stories of many incredible Cancer Moms this month and how they define support.  We want to be their voices, reminding you all that the ONLY way we can make things better for kids fighting cancer is to do something about it. We hope we all find ways to lighten the load for our friends, neighbors and family members struggling quietly, valiantly, every single day, to keep their children alive. Donate today in honor of a mom. Donate in honor of a child. Your donation to ISF helps fund pediatric cancer research in our local community.

By Kellie Andrew

Kellie is Mom to Brinn, who was diagnosed with stage 3 high risk neuroblastoma in December 2018.  Brinn is currently 2 years old and in treatment at Levine Children’s Hospital. 

There’s a lot going on in our family.  Happy and sad. Hard and then even harder. Our heads are just above water most days.  But we are finding a way to be okay.  I recently said that we live just one day at a time.  But that’s not true.  It’s really one moment at a time.  Sometimes the days are just too long and hard to think about.

The word ‘support’ for me personally is very broad. It means a card, a comment on social media, sharing a story online, a text, or phone call. Support means a meal, a gas card, a basket of items on my front porch, the offer to mow the yard or clean my home. It means a coffee mug, a soft blanket, an eye mask, and a new nail polish. It means a self-help book, being added to a prayer list, or coming to visit and just listen. Support means offering to watch the kids so we can go have dinner and have a moment to ourselves. 

I also feel extremely supported through the hospital and clinic. I feel heard and respected as her mother at all times. I feel that my thoughts are valued, which encourages me to be a part of each step in her treatment. 

Support means just knowing that someone else is thinking of us and making a point to let us know. 

I can only speak from my experience but without the things I mentioned above I feel that I’d really be struggling much more. I do feel I have a ‘job’ to keep everything together—physically and emotionally—for my family. That is pressure I put on myself. What’s the saying, ‘If momma ain’t happy, nobody’s happy?’ There is so much truth to that! I don’t want anyone to worry about me not being good. Getting a quick text or opening a card in the mail or having lunch arrive at the hospital from someone lifts my spirits. It makes me see just how good people can be, just because they want to be; restores my faith in others. In turn, I want to put that gratitude and happiness back into my family. 

Donate in honor of these incredible women, your donation to the Isabella Santos Foundation helps fund research so desperately needed for rare pediatric cancer patients.

MAY CANCER MOM SERIES:

Shining a Spotlight on Joedance Film Festival

Joedance Film Festival is held in memory of Joe

What started as a neighborhood outdoor movie night has evolved into a successful Charlotte film festival to raise funds for pediatric cancer research.

Joedance Film Festival is held the first weekend in August in Charlotte. This year marked the 9th annual festival and a major milestone for growth. Originally held in a townhome courtyard in Uptown Charlotte, Joedance recently expanded to the Charlotte Ballet Center of Dance. Several hundred people gathered for this year’s event, which screened 13 short films by film directors, writers and producers who have a Charlotte connection.

“This was the first year it was at the Charlotte Ballet Center for Dance and it was fabulous,” said Diane, Joe’s mom and founding president of Joedance Film Festival. “Changing venues was good for the festival. It felt like we grew up!”

The two-day film festival is held in memory of Joe who passed away at age 20 from bone cancer in 2010. Funds raised support rare pediatric cancer research and clinical trials at Atrium Health’s Levine Children’s Hospital. Many of the things that Joedance funds came from discussions that Joe’s family had with him before he passed away.

“As a family, we had time to deal with Joe’s cancer,” said Diane, Joe’s mom and founding president of Joedance Film Festival. “He was of an age to understand what was going on and wanted us to continue to raise funds for Levine Children’s Hospital. For him to make a list of what he wanted us to do gave us a clear path.”

The Charlotte Ballet Center of Dance is now home to Joedance Film Festival

In fulfilling Joe’s wishes, the organization established a paid summer internship program at Levine Children’s Hospital for college students in the medical field. It also funds the recurrent bone cancer trial at Jeff Gordon Children’s Hospital and the Isabella Santos Foundation. It has also committed to fund first-line research technicians at Levine Children’s Hospital’s pediatric cancer research lab, which will open in 2019. For the past six years, Joedance coordinates Modern Salon & Spa to do a spa day every other month for the parents at Levine Children’s Hospital. To date, Joedance has donated over $150,000 to Levine Children’s Hospital.

Joedance is also the beneficiary of the Premier Property Solutions Panthers Tailgate Party. The next one will take place on Sunday, November 4 at 1341 S. Mint Street. If you’re in the area, stop by and support Joedance while cheering on our Carolina Panthers.

Pounding for Parker

Parker and his brother

It’s no wonder why so many people are pounding for Parker. His strength, resiliency and determination are such an inspiration.

Parker was nearly seven years old when diagnosed with a very rare tumor on his spine. His cancer, which originated between one of his vertebrae, runs from his tail bone up into his lower brain. Because the tumor was mixed in with nerves in his spinal column, it was too risky to remove. So Parker underwent two different types of chemotherapy, which he completed in May 2017.

He also has more nerve damage in his left hand, but doesn’t let that stop him. Today, the fun-spirited nine-year-old is in third grade and has resumed school and his favorite sport – lacrosse. As part of his ongoing therapy, Parker continues to get monthly checkups and quarterly MRIs at Atrium Health’s Levine Children’s Hospital.

“He’s doing really well; living life like a normal kid and being a great big brother,” said his mom, Allison. “He has lots of energy, a good sense of humor and is very driven.”

Pounding for Parker Foundation check presentation to Levine Children’s Hospital

Because Parker may need additional therapy in the future and that there is no cure for his disease, his parents – Allison and Jonathan – launched the Pounding for Parker Foundation in 2017. The Foundation hosts an annual golf tournament, gala and other community events to raise funds to advance research for pediatric brain tumors and improve the quality of life for childhood cancer survivors. In its first year, the Pounding for Parker Foundation presented $100,000 to the Levine Children’s Hospital Brain Tumor Survivorship Clinic.

Among the organization’s fundraisers this year is the Pounding For Parker Foundation Gala. It will take place on Thursday, October 4 at 7:00 p.m. at Sweet Magnolia Estate in Cornelius. There will be a silent and live auction, chef-prepared food stations, beer, wine and live music. In addition, the silent auction will be online starting Thursday, September 27. For more information, to purchase tickets and to check out the silent auction, visit https://poundingforparker.org/event/.

“We’re excited to be in the Charlotte community and to give back to Levine Children’s Hospital,” said Allison. “Our doctors are like family and have really been there for us. We want to do everything we can to find a cure for pediatric brain tumors and come up with solutions for the many issues that pediatric cancer survivors face.”

An Army of Support

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.”

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.