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Defining Support, The Cancer Mom Series: Kelly

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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 Kelly Weaver

Kelly is Mom to Andrew, who was diagnosed with neuroblastoma at four months old.  Andrew is currently 4-years old and cancer free.

“We found a mass in your son’s chest. At this time we do not know what it is, so we are transporting you to Levine Children’s Hospital. You will be a direct admit to the 11th floor, Pediatric Oncology.”  These words will haunt me forever. As I held my four month old son, it seemed surreal that the hospital pediatrician could be talking to me, about my son, and that she used the words “pediatric” and “oncology” in the same sentence. A few days after being admitted, my son was diagnosed with neuroblastoma. 

The outpouring of support my family received was heartwarming and beyond what we could have imagined. We were very lovingly supported by our family and close friends. Through Andrew’s course of treatment, we learned how many friends we really had on our support team. We received notes of encouragement, via cards, social media, and Caring Bridge posts, along with gift cards for meals. Neighbors walked our dog on a routine schedule they set up and home cooked meals were provided at the end of long clinic days. We were taken care of by these gestures of tangible support. Our friends and family took care of us, so we could take care of Andrew. To me, showing support, means never letting anyone think they are forgotten. Everyday we received inquiries about Andrew’s health, what we needed, and how individuals could assist in raising fund for pediatric cancer awareness and research. Andrew is now four, thriving, and in remission for over three years. Our visits to clinic and Levine Children’s Hospital are a combination of yearly survivorship appointments, dropping off donations, and visiting friends who are in the midst of their own fight against pediatric cancer. 

My family found ourselves in a terrifying situation, but not alone. Via the pediatric cancer community I now have dear friends who share the same fears as me. Fears about relapse, fears about long term side effects, and fears about the lack of funding for research. But through these friends, I also have a level of support, understanding, and reassurance that no child will fight pediatric cancer alone. We won’t let it happen.

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:

Defining Support, The Cancer Mom Series: Kellie

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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:

Defining Support, The Cancer Mom Series: Dianna

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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 Dianna Lariviere

Dianna is mom to Max, who currently is in treatment for Stage IV High Risk Neuroblastoma.

Dianna & Max

When Max was diagnosed on August 5, 2018 our lives were forever changed, and it’s been extremely difficult in so many ways we didn’t even imagine possible.  We live in a very rural community and it felt like everyone, even without knowing us personally, immediately dropped to their knees in prayer.  The outpouring of love for our son was and still is indescribable.  We moved south 8 years ago and to have so many people come together for our son still brings me to tears.  The impact Max has made in a weird way helps me.  His disease has put so many parts of life into perspective for not only us but everyone that knows him or follows his journey.  

It took a very long time for me to feel like I was ready to truly speak about being a cancer mom.  I have developed very bad anxiety and to be honest, I am angry.  Sure I do the updates and post about how pediatric cancer deserves more federal funding but to really talk in depth about the situation didn’t happen until more recently, and we are 9 months into an estimated 3-year treatment plan that’s 5 months behind the original schedule due to various factors.  Our social worker reached out to another cancer mom who’s son had a similar diagnosis and is doing well.  My anxiety and worry was really getting the best of me and I needed to hear from someone who lived it that there was light at the end of this pitch black tunnel.  She checks in all the time and has really been a blessing to me.  I don’t know that I’ll ever be able to show her how much she has helped me but someday I’ll try!  I’ve met other cancer moms that have treated at our hospital, Levine Children’s, and having someone who has lived the nightmare that you can openly talk to, that completely gets what you are saying without judgment, is a huge stress reliever.   You will never meet a group of more badass women (am I allowed to say that?!) than those who have had to watch their child, many times helplessly, endure treatment for cancer.

I am extremely thankful that we are treating at a hospital that provides such close care to the patient and family.  It really is a family.  These children bond so closely with the nurses and oncologists, social workers and child life specialists.  I was going to count how many days we have spent in the hospital but I don’t think that’s a good idea because it’s way more time than we have spent home. 

The parental support is so important.  I have friends and family that check on me multiple days a week.  I don’t always respond and they don’t care.  They just want me to know that they are there, from a distance, ready whenever I am for whatever I need – a cry, a scream, a hug, to vent or an adult beverage and not talking about the c-word at all.  I’m told quite often that I need to take care of myself to be able to take care of Max.  I’m still working on that part.  I love to do arts and crafts and garden but it’s hard when you aren’t home often or your child isn’t strong enough to allow for you to get that release.  Trying to fit in family time is difficult as well.  It’s not often the 3 of us are all together. 

I will forever be a cancer mom.  I’ll never be that person I was before I was told my child has cancer.  While everyone is wishing for their child to make the sports team or be top of their class or to not catch the stomach bug being passed around, I’m wishing for survival.  So to all those who have reached out, prayed and sent positive vibes, fed us and provided us with gas money, sent Max gifts to put a smile on his face and provided an ear to talk with – THANK YOU!  Your support matters more than I could ever put into words.

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:

Charlotte’s unsung heroes: They made Charlotte better in 2018 (Part 2)

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Originally published by The Charlotte Observer Editorial Board

Erin Santos with her daughter, Isabella. Santos has responded to Isabella’s death by helping others in similar situations. ANGELO MERENDINO

Each year, the Observer editorial board searches for heroes among us who make our city and region better. This year, we’ve found people who’ve made the most of a second chance, helped dads connect with children, helped students explore and forever changed treatment of cancer in Charlotte. (We published our first two honorees yesterday.) To them, and to all who make our community better, we say thank you!

Reimagining pediatric cancer care in Charlotte

Charlotte’s Isabella Santos was 2 years old when she was diagnosed in 2007 with neuroblastoma, a rare cancer that mostly afflicts very young children.

Her parents couldn’t get the treatment they needed for her in Charlotte. So they took Isabella to Sloan Kettering in New York and to Children’s Hospital of Philadelphia to try to save her life.

 

Even as they cared for their daughter, they quickly created the Isabella Santos Foundation to raise money to fund research at Sloan Kettering for a cure. At first it wasn’t much – they raised $7,000 at their first 5K race in Ballantyne.

But Isabella’s mother, Erin Santos, quit her job at Lending Tree to work on the foundation full time, and she changed the focus. She had had the resources to take Isabella around the country, but she knew other families didn’t, with deadly results. They needed world-class treatment in Charlotte.

So Erin stopped sending money elsewhere and instead worked with Levine Children’s Hospital to treat neuroblastoma here. The foundation raised $1 million last year and $1.4 million this year. It used part of that money to partner with Levine to build an MIBG treatment room, one of fewer than 20 in the country and arguably the best.

Erin Santos and the Isabella Santos Foundation have forever changed treatment of neuroblastoma in Charlotte. But they’re not content to stop there. They have pledged to raise $5 million over five years to have Levine build a rare and solid tumor program that would treat about 15 different rare cancers. It would be the only one of its kind in the country.

Isabella Santos died in 2012 at the age of 7. But her life, through the work of her mother Erin, will benefit others for generations.

Max – The Mighty Cancer Warrior

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Max the mighty cancer warrior

Max is a neuroblastoma warrior. The energetic and active three-year-old has been fighting high-risk Stage IV Neuroblastoma since August.

His diagnosis came as a complete surprise to his parents, Dianna and Roger, who say that Max was the healthiest and wildest kid you’d ever meet. 

Max sometimes complained about knee pain and then his eye started getting puffy. Then one day, his eye looked black and blue and got worse. Then the other eye turned yellow and started to bruise. Knowing something was off, Max’s parents took him to the doctor for blood work.

The results showed cancer, so his pediatrician called Dr. Oesterheld at Levine Children’s Hospital, where Max was admitted immediately. It was there that Max and his parents became part of the LCH family under the great care of Dr. Oesterheld and an amazing team of nurses and other medical professionals to begin a long and rigorous treatment process.

Max’s Treatment

The primary tumor is on Max’s liver, on two lymph nodes on his abdomen, and his eye. He recently had 30 percent of his liver removed, a resection surgery to remove his tumors, and received his sixth round of chemotherapy. He has also had 11-12 blood transfusions and four platelet transfusions since August. 

Max the mighty cancer warrior

Max still has bone cancer on the entire top of his skull, right upper arm, pelvis, spine, and legs. His treatment is being pushed back three to four months, because his cancer isn’t quite ready to move forward with the original treatment plan, which would include a high dose of chemotherapy and stem cells. He may end up needing MIBG Therapy. 

“I would never want anyone else to have to go through this,” said Max’s mom, Dianna. “It’s very scary, but we are very grateful to the amazing team at Levine Children’s Hospital who are like a second family.”

Max is part of DFMO drug study at LCH to help prevent relapse of neuroblastoma. As part of the study, he takes a chemotherapy pill at home. Fortunately, it doesn’t add any additional side effects or toxicity. 

Max bounces back between treatments and enjoys his time at home in Montgomery County where he and his family have a hobby farm. Max’s best friend is his chicken named Pumpkin who is like a dog in the way he plays with him and follows him around.

Pediatric Cancer Funding

Max receiving treatment at Levine Children’s Hospital

It wasn’t until this summer’s shocking news that Dianna realized how much funding is needed in the pediatric cancer field.  Since Max’s diagnosis, his parents have become passionate about raising awareness and funding for pediatric cancer and supporting local hospitals like Levine Children’s because they don’t turn people away. 

Adds Dianna, “These hospitals are like angels doing everything they can do to give all these kids a fighting chance. My new mission is educating people about rare childhood cancer. No baby, three-year-old or teenager deserves to die because there is not enough money to save their lives. I will do whatever I can to make a difference.”

If you are interested in helping support Max during his treatment to assist with medical expenses and gas cards for their two-hour trip from Montgomery County to Levine Children’s Hospital, please email Dianna at dianna.lariviere@gmail.com to her PayPal. 

Max and his pet chicken Pumpkin

Max, Cancer Messed With the Wrong Kid

Max and Santa