When “Probably Nothing” Means Everything
Parents Anne Marie and John Sands trusted their guts and sought a referral to Arkansas Children’s Hospital, which inevitably saved their daughter’s life
When the fifth doctor in five months to examine two-year-old Kaylynn Sands told Anne Marie and John Sands that the knot on the side of their daughter’s neck was “probably” nothing to be concerned about and that he would just leave it alone, no one would have blamed them for adopting the adage “no news is good news” and letting the matter drop there. But the Sands weren’t satisfied with “probably.”
“There were constant appointments and no real answers,” says Anne Marie, recalling her frustration. “When we left each visit, we didn’t know what the next step was.”
Their pediatrician encouraged them to get one more opinion, this time from Arkansas Children’s Hospital ENT specialist Dr. Gresham Richter. Anne Marie recalls her gratitude at finding someone who was as determined as she was to get answers.
“As soon as he walked in and saw her, he put together a plan of action, with surgery scheduled for the following week,” she remembers. After months of doctors saying, “we don’t know,” it was such a relief to find someone who was being proactive. “There was no clear guidance until we saw Dr. Richter. He was so confident, and so clear in his decision; it put us at ease.”
In surgery, it was discovered that the mass was wrapped around critical nerves and blood vessels. A biopsy revealed it was a form of cancer–ganglioneuroblastoma.
Kaylynn started a plan of treatment with oncologist, Dr. Amir Mian, and when scans after several months of chemo showed no shrinkage of the tumor, the family was referred to Children’s Hospital of Philadelphia, where it was finally removed. But the Sands credit Dr. Richter and Arkansas Children’s with launching Kaylynn on the road to recovery. “Dr. Richter has a special place in our hearts. We trust him completely.”
Anne Marie says she always knew ACH was a special place. She even helped fundraise for it with her sorority. “I always had a good feeling about it,” she says. “But there was no way I could understand how awesome it is until my own child was there. “
One special memory of their time there was when a nurse read a funny book from memory to Kaylynn to keep her distracted during a painful procedure. “She went above and beyond. The entire staff was always friendly and welcoming and took care of us. We felt at home there,” said Anne Marie.
Now, Kaylynn is on the downhill slope of her journey. Anne Marie reports that they still make follow up visits to ACH every couple of months from their home in Magnolia. The experience has been formative for the five-year-old, who her mother describes as “sassy.” “We talk a lot about service and helping others because so many people helped us. We do fundraising and volunteer work together, and she comes to every meeting and every event,” says Anne Marie.
“Her journey with the illness may be coming to a close, but her journey with the experience will last a lifetime. She shines her light everywhere she goes.”
A Mom’s Way to Give Back
by Anne Marie Sands
It is easy to feel helpless when your child receives a cancer diagnosis. Even before your baby is born, you begin your job of protecting and keeping them from harm. Then, all of a sudden, you cannot do anything to protect them from this awful disease. Their health and care are in the hands of strangers. If you are lucky, you are at a hospital like Arkansas Children’s Hospital and you know that you can trust the people there telling you that they will take care of your baby. The peace of mind they give you is priceless, at least it was for my husband and me when our daughter, Kaylynn, was being treated there.
Kaylynn was two when she was diagnosed with cancer. She was still shy around strangers. Having a team of doctors and nurses come into your room and want to look at you and talk about you can be overwhelming, but the amazing people at ACH made Kaylynn feel comfortable. They treated her like she was a princess and loved on her like she was their own. It didn’t take long for her to open up and for the hospital to be a place where she was at ease.
I knew that I wanted to be involved in helping this incredible hospital, but I wasn’t sure how to do that since we live 2 ½ hours away. One day, we were waiting for an appointment, and I noticed the name of the clinic where we spent so much time. It was called the Circle of Friends Hematology/Oncology clinic. I knew instantly what I needed to do. I joined our local Circle of Friends Chapter and have been fundraising for Arkansas Children’s ever since that day. This organization has helped me to feel joy after a terrifying situation.
Kaylynn has also become an Ambassador for Arkansas Children’s, and we get to raise money and collect donations together. She even says she wants to work for the hospital when she grows up! Each year for her birthday, she asks friends and family to donate toys for ACH, and we deliver them to the hospital. It is just one very small way that we can give back to the place that helped our family through one of the hardest times of our lives.
