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Tribute. Legacy. Honor

This picture was taken on the morning of December 23, 2019 as we presented $650,000 to the Levine Children’s oncology team.  This particular morning was incredibly special to me for several reasons, not only because of the big dollar signs.

Many of you know, I lost my mom suddenly on November 3rd, to ovarian cancer. The holidays were thrown right on top of that, so these last few months have rubbed my family raw. The outpouring of love and support has been overwhelming with almost $10,000 donated to ISF in honor of my Mom.  Amid so much pain and grief, each donation brought a little unexpected joy to our broken hearts.

My family was in town for the holidays, so I asked my Dad to go with the team up to the hospital to present this check.  Afterall, almost $10,000 of that check included all of Mom’s tributes we received at the end of the year. I also thought it would be great to show him the place and the people I work so passionately for, day in and day out. Dad was thrilled and asked if we could head up a little early to visit with Merritt and her parents since they were in clinic that morning.

Why did my Dad want to visit with Merritt and her family?  He wanted to personally say ‘Thank You’ to them for attending my Mom’s Celebration of Life.   To say, ‘Thank You’ for driving 10+ hours round trip across the state for a woman they have never met. To say ‘Thank You’ for honoring her and paying tribute to her. And to say ‘Thank You’ for supporting us. It was so thoughtful that they took the time to support our family during such a difficult time. 

Thinking back to December 23rd as being incredibly special, is an understatement. For me it signified strength, healing, love, guidance, family, encouragement, lasting legacy, change and so much more.  A full circle moment for us celebrating my Mom’s life in a special way and giving my Dad the opportunity to say ‘Thank You’ to a cancer family I support… that is now supporting us. In hindsight, it would have meant the world if my Dad was in the picture with us, but just his being there meant everything.  

Tribute. Legacy. Honor… all words you will hear us say A LOT this year at ISF.  We are so excited for what’s to come, because every move we make in 2020 will be in honor of someone special.  We want to help turn all the pain into change for kids fighting cancer.  

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

Much Love,

Rachel, ISF Marketing Director

Isabella Santos Foundation Donates $650,000 to Levine Children’s

On December 23, 2019 our foundation was proud to end the year by presenting Atrium Health’s Levine Childrens Hospital with a donation in the amount of $650,000. This donation will benefit the ISF Rare & Solid Tumor Program at the hospital. The program will oversee care for all solid tumors, rare tumors, MIBG therapy and all related clinical and scientific research at the hospital.

Left to Right: Dr. Oesterheld (LCH), Erin Santos (ISF), Karen Murphy (ISF), Dawn Bartock (LCH), Rachel Wood (ISF), Kayla, Merritt & Aaron Plummer (Rhabdomyosarcoma cancer family)

We lost two very special souls recently. In November Corey Morgan lost his battle to Ewing’s Sarcoma at 20 years old. Just two days ago Madison Fedak lost her battle to Osteosarcoma at 7 years old. It’s just not right. So today we made this donation in their honor. They inspire us to keep going. To do more. There has to be more options for kids fighting rare pediatric cancers and we are determined to increase survival rates. We just wish we could have done more in time for Corey and Madison.

Thank you to everyone for supporting us this year. Thank you from the bottom of our hearts. We can’t make a difference and change outcomes for kids fighting cancer without you. This donation was made possible due to your support. 

We are so sad… but we are equally as mad. Our fire is lit. Watch out 2020 we are coming for you and ready to do more.

MIBG Patient Receives Gifts By Isabella Santos Foundation MIBG Ambassador

Our team is so excited to share that another patient was recently treated in the Isabella Santos Foundation MIBG therapy room at Levine Children’s!

When a child begins MIBG treatment they receive a gift basket paid for by ISF MIBG Ambassador fundraising. This MIBG basket is thanks to Melissa Scanlon, a fellow cancer mom, and her sweet family. Melissa’s daughter, Gemma, was diagnosed with Wilms Tumor on her 3rd birthday in 2017.

Thanks to the Scanlon’s, we were able to provide a few comfort items, gift cards, snacks, toys, and more to make it feel a little more like home!

Levine Children’s Hospital is 1 of 20 hospitals to have a MIBG Treatment room in the U.S. and the only location in the Charlotte region. The two-room MIBG suite provides targeted radiation to pediatric neuroblastoma patients with minimal side effects. This therapy impacts kids fighting cancer beyond the greater Charlotte region and will eventually expand to include adults with rare tumors.

Neuroblastoma Patient Successfully Completes MIBG Therapy in Charlotte

Another patient was successfully treated in the Isabella Santos Foundation MIBG therapy room at Levine Children’s. As a child and family enter MIBG treatment they receive a gift basket specifically paid for by last year’s ISF MIBG Ambassador fundraising efforts. Patients stay in the MIBG room 3-7 days after they receive their injection with parents/caregivers in the adjoining room, so our hope is that these baskets help bring a little comfort in their time away from their own home.

If you look closely at the note, this MIBG basket is thanks to Tim McBride… also known as McBeast! Thanks to Tim and his supporters, we were able to provide a few comfort items, snacks, toys and gift cards for food, gas, coffee, and more. 

Levine Children’s Hospital is 1 of 20 hospitals to have a MIBG Treatment room in the U.S. and the only location in the Charlotte region. The two-room MIBG suite provides targeted radiation to pediatric neuroblastoma patients with minimal side effects. This therapy impacts kids fighting cancer beyond the greater Charlotte region and will eventually expand to include adults with rare tumors.

Through My Eyes: What It’s Like to Help Kids Understand & Cope With Their Cancer Diagnosis

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: Pediatric Oncology Child Life Specialist
  • Name: Paige Hinkle
  • Hospital: Levine Children’s Hospital, Outpatient Clinic

Paige is a Certified Child Life Specialist in Levine Children’s pediatric oncology outpatient clinic. She helps patients, siblings and their families understand and cope with their cancer diagnosis. Paige was featured on our social channels (Instagram & Facebook) on 9/19/19 to share why she continues to work with pediatric oncology patients and a few of the difficult conversations and intimate moments needed when childhood cancer won’t back down. This is childhood cancer.

I feel so lucky that I get to be a Child Life Specialist to our kids fighting cancer at Levine Children’s! I get to see these kids exhibit what it is like to truly be courageous. Courageous doesn’t always mean being brave and it doesn’t mean it gets easier-it means finding strength in the midst of pain, grief, and fear. And these kids show it every day!

These past few weeks have actually felt like cancer is literally smacking us in the face.  It has been a brutal time for our team as we witness cancer striking time and time again. During these emotional times, I remind myself to focus on my role with patients. Focus on what I can do right now to comfort them and what I can plan on doing to bring calm to the storm cancer causes.

As a Certified Child Life Specialist, my role changes a little bit from providing procedural support and educating our patients about their diagnosis in a way that they understand. First and foremost, these kids are kids-and I love getting on their level and meeting them where they are. Sometimes that looks like making transformers out of playdoh or playing countless rounds of UNO. 

And sometimes my job is that I get to use real medical materials and human body books to teach these kids about their cancer and what their treatment will look and feel like. Other times I get to talk with our kids about their hopes, dreams, and goals and work my hardest to make those things happen.”

I love that I get to work with these kids and their families for months and even years! It brings me so much joy to invest in these kids long-term. My favorite memory is of a school-age patient that I spent a lot of time with. He would always ask for me to come see him, but sometimes he would hear my voice in infusion and just yell down the hall “Paige! Come see me! I’m in here!” Sometimes he would yell that as the nurse tech was trying to get his body temp through his mouth. I always look back on that memory and laugh. He was such a special buddy to me. I treasure these relationships.

I love seeing them grow throughout the years I get to spend with them.  I get to see how far they have come and the warriors they’ve turned into-it’s so rewarding to see the progress they make not only physically but emotionally. I get to work with them during their first port access, I teach them with medical supplies what the procedure will feel like and I coach them through that procedure. And over time, our kids really take that control back that cancer has taken away. They master things that are really hard! I’m just so proud of them.  They are all gifts and they are changing the world.

Intimate Conversations

“Every single living being has a beginning, a time to be alive, and then an ending , or death…”  -When Dinosaurs Die

“Sometimes we must tell a patient that we don’t have a way to make their cancer go away.  That their cancer is making it hard for their -heart, lungs, liver, brain-to do their jobs and keep their body working how it should.  We tell them we have tried all the options, and that because our bodies can’t live with cancer, their body is going to die. During those conversations, we always, always reserve space that something miraculous will happen.  But we have to prepare for what is most likely going to happen. We want to help arm our patients and families with new ways to fight their cancer.    

As a care team, we want to help set them up to have the best quality of life possible. That means our team makes plans to help our patients to have less pain, more comfort, less time in the clinic and hospital, and more space to make this time look like what they want it to.  We surround them with the support to make difficult decisions and to process unimaginable emotions. Cancer wants to control, to overwhelm, to squash hope, and to take away life. These new weapons help to give control back to our patients, to give them new kinds of hope, and to pour more life into the time that is now.

Beauty That Cannot Be Overshadowed By Cancer

When a child has advanced cancer they become more motivated to influence others’ lives and prepare for their own deaths.  So, I schedule special appointments with our patients to spend this time talking about what legacy they want to leave behind and together we create new pieces of legacy to give to their loved ones. Our patients need and want to know that they will be remembered, and they won’t be forgotten. These interventions have been studied and found to increase kids’ sense of purpose, meaning, and will to live increased, which causes suffering and depressive symptoms to decline. Legacy projects also bring our families incomparable joy as they remember their child.  What better way to fight cancer then to do these things?

So what does it actually look like when our families use these new tools to fight their cancer? They go to the beach one more time, fly across the country for a rap concert, they get a tattoo.  I help them make art with their handprints, use their beads of courage to share their story, and make priceless gifts for their family. Their loved ones provide their child space to just be a kid-to play, laugh, and make new memories as a family. Our families talk with their children about what heaven looks like, they ask us their brave yet scary questions to prepare, and a million other acts of love – that’s why they are our heroes. This is how we help turn something that is so traumatic, so dark, so horrible-into something that is beautiful, that shines bright, and cannot be overshadowed by cancer

More Hope Is Near

This can look like so many things. Sometimes, families do something really brave-they come back to the clinic where their child was treated. We get to love on them more intimately, share special memories together, and hold space to breathe new hope into what happens next. Our families rise up, weapons re-arranged and they do exactly what cancer tries to take away. 

They stand with their new army, sometimes hundreds or thousands of people who support their mission, and they help us to make this better for our kids. While processing their OWN loss and grief, they take care of the next precious little bodies that cancer dares to infiltrate. Our families work endless hours to raise more money-and more money means change and hope and life and more answers to fight this. They raise awareness by telling their child’s story and they share the light that their child has brought to this world. It doesn’t matter if these stories reach 1 or 1,000 people. 

Our families also help us to care for our families on a deeper level. Through partnerships… they help us buy a wheelchair that makes a patients’ day a million times easier, they give us Starbucks gift cards to give parents a break while their child is inpatient, they bring us LEGO’s and blankets and so much more to bring smiles to their faces. Every bit counts and impacts our families. 

Through these families, I get more and more motivated to keep what I’m doing, because it matters. These kids keep me going, keep us going, and we aren’t stopping.  I love to imagine that cancer is shaking in its’ boots. Because our families aren’t backing down-they’re getting stronger and more hope is near.

Paige says that families go through all the stages of grief, but for every child lost, they have to process two losses.  The life of the child that should have continued, and the actual loss of their child. Every child deserves to just be a “normal kid”, fulfill their dreams, go to college, get married.  Help us make that a reality. This is childhood caner. Are you aware?

DONATE

*** 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

9/9:  Through My Eyes: Behind the Mind of a Teenager Fighting Cancer & Social Anxiety

9/11:  Through My Eyes: What It’s Like to be a Young Adult Living With Cancer

9/13: Through My Eyes: What It’s Like to be a Young Adult Supporting a Loved One With Cancer

9/15: Through My Eyes: Week 2 Results

9/17: Through My Eyes: Behind the Scenes With Charlotte Pediatric Oncologist, Dr. Oesterheld