Our little five-year-old Elayna was the happiest, healthiest child we knew. She had long blonde ringlets and a smile that lit up the room. We spent our time running and giggling at the park, playing dress-up, singing along to Disney songs and the Beatles, and dancing while Daddy played guitar.
Life was perfect. Until quite suddenly the life we knew was gone.
One night in April of 2014 Elayna had sudden, sharp stomach pain. She slept through the night, but we knew a doctor should check her out, so we took her first thing the next morning to Blank Children’s Hospital’s Emergency Room. We thought she might have appendicitis, and immediately did a CT scan of her abdomen.
What we found would alter the course of all of our lives forever.
A very large tumor filled her right kidney. It was so big her kidney had been stretched to double its normal size.
Within just three hours of walking through the doors of the ER, doctors told us our beautiful, bright, funny, sweet, innocent little girl had a pediatric cancer called nephroblastoma.
The whole world split in two in that moment.
Elayna’s first surgery (where they took a tissue sample from her tumor and placed a port-a-cath for her to receive chemotherapy through) was the very next day. The days that followed were monopolized by surgeries, chemotherapy, radiation, medications, needle accesses, nasal gastric tubes, and a lot of tears (which came mostly from the adults).
Elayna was brave from the beginning. She was our only constant.
The doctors said Elayna had “the best kind of cancer to get.” Statistically speaking she had a cancer that was considered highly treatable. 94% of children with her diagnosis survive at least 5 years.
We made it through her 9-month treatment regimen and out the other side and thought we were done with cancer. Her doctors thought so, too. Her port was removed and we celebrated.
Soon after, Elayna started fundraising with me for the non-profit organization Unravel Pediatric Cancer. She believed, with her whole heart, that the people at Unravel would be part of the answer for children like her. She was so proud of every donation that was made in her name. We thought we were fundraising for other children. We thought we were working for scientific advancement that we wouldn’t need.
We were wrong.
Less than 10 months after we celebrated remission we were devastated to hear that Elayna’s cancer was back, and had spread to both of her lungs.
This was the new worst day of our lives. We knew her second time through treatment would be much harder and that our odds of beating the cancer were not nearly as good.
What shocked us was that, where there had been a clear treatment protocol the first time, there was no clear treatment regimen with relapse.
We began making choices about what we thought might work. We had fallen into the unlucky group of families whose child needed more advanced, individualized care, and it was a guessing game. Suddenly, we were a poster family for why funding pediatric cancer research is so important.
Elayna faced the new challenge head-on, telling me “I beat cancer once. I can do it again, Mommy.”
She was put through a very toxic treatment including high-dose chemotherapy so strong that her body would have certainly not survived it if she had not been saved with her own stem cells.
She fought like a warrior and was famous for pep-talking herself out of any tough situation, sad mood, or struggle. Elayna didn’t focus on her sorrows. She loved laughing with her friends, baking, reading (especially Harry Potter), playing Pokemon, and snuggling her cat.
She found joy.
Sadly, even fighting like a warrior didn’t keep her from relapsing a second time before we even really got to celebrate finishing treatment again. This time there were no curative options on the table. We tried a couple of trials and some other chemotherapy to keep her cancer at bay while praying hard for a new treatment to be developed, but it didn’t come in time. We never celebrated remission again.
During treatment Elayna collected “beads of bravery” from the hospital. Each one represents something that she endured. Before she died she had collected almost 2,000 of these beads.
When I add things up I can’t believe what she went through. In her 4 1/2 years of treatment, my little girl received 254 doses of chemotherapy, 24 radiation treatments, had 19 surgical procedures, received 37 blood transfusions and 50 platelet transfusions, and spent well over 100 nights in the hospital and countless hours in the oncology clinic.
After fighting so hard for so long, on August 22, 2018, my beautiful best girl, Elayna Grace, passed away in my arms.
7 children die every day from pediatric cancer and on that day my little soulmate was one of them.
It still feels surreal that this is our reality. We shouldn’t live in a world where a parent has to hear that their child is out of treatment options. Where a child who fights that hard has to be told it’s time to give up.
Unravel Pediatric Cancer
With Elayna’s passing, it was very important for my husband and me to start a local chapter of Unravel Pediatric Cancer. We imagine she would be thrilled to see her community supporting it as they are.
Unravel is unique in how they fund pediatric cancer research. They select scientists and doctors who have truly innovative ideas about how to advance the field of pediatric cancer treatment. They fund them without the usual red-tape that would come from a restrictive government grant. What this means is that researchers who are funded by Unravel and in the middle of truly ground-breaking research can be more fluid and efficient in following the developments of their work. Instead of having to stop and restart with a new grant request every time they make a discovery that might change their course, they are given permission to continue their work seamlessly.
Children like Elayna who are fighting for their lives have limited time. Unravel funds pediatric cancer research in a way that doesn’t waste any time.
Unravel Iowa is just getting started. I can’t wait to see what Iowans can do to help change the harsh realities of pediatric cancer. We founded the chapter in memory of Elayna. This is now the most meaningful way I get to be her mother, but we are fighting for all children. No child is safe from this diagnosis.
We were a happy, healthy family, until one day we weren’t. Now we know better. We choose not just to be sorry, but to be ACTIVE in this fight. Will you join us?
Connect with Unravel Iowa
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Lucy Sandeen lives in West Des Moines, Iowa, with her husband. She is proud to be the mother of a beautiful, strong, amazing little girl, Elayna, who fought pediatric cancer like a warrior for 4 1/2 years before she passed away in August of 2018- forever 9. Lucy is carrying on Elayna’s work in her memory. She is dedicated to helping fund pediatric cancer research and fighting for better treatment options for our youngest warriors. She is now the chapter director for a local chapter of Unravel Pediatric Cancer in Iowa.
