September is Childhood Cancer Awareness month.
Throughout the month, the goal of those personally affected is to spread awareness through social platforms — finding ways to encourage local families and organizations that support pediatric cancer.
A lemonade stand will be set up from 9 a.m. to 3 p.m. Sept. 20 on the north side of West Green Bay Street (booth 118) during Bonduel’s Founder’s Day, on behalf of Alex’s Lemonade Stand Foundation, a nonprofit that was launched to help kids with cancer.
Every dollar raised on Saturday will go directly to this organization to help fight against childhood cancer. US Venture is matching all money raised from the lemonade stand to double the donation. More information on the foundation can be found at www.alexslemonade.org.
Amira Rynish, daughter of Brianna and Jordan Rynish, has been on a journey no parent would ever wish for their child.
“Partnering with Alex’s Lemonade Stand Foundation is dear to our heart,” Brianna Rynish said. “They are very intentional about where the money goes and how they can help as many kids as possible. They help to finance research, family support and advocacy work. We face challenges in advancing cures and safer treatment for children with cancer because, unlike adults who may be out of options and more willing to try clinical trials, parents are not as willing to enroll their children in these studies.”
Out of all government funding for cancer, only 4% of it goes to pediatric cancer research. Between funding issues and the lack of research, there’s been little to no progress toward new treatment discoveries. The medicines that are used are still from the 1970s.
Amira, a happy 6-year-old first grade student at Bonduel Elementary, is cancer-free currently and in remission.
“She loves her brothers, unicorns, crafting, swimming and anything pink,” Rynish said. “Her dad and I are so proud of her, but nothing makes us happier than watching her play and experience life outside of a hospital like all kids should.
“We have a lot of prayer warriors that have helped us on our journey and still help us,” she continued. “Going forward five years without chemo without relapsing, is when her medical team is confident that it’s not coming back.”
There will be long-term monitoring, testing and watching to determine if there would be any long-term side effects post-chemo.
Amira’s cancer journey began in June 2021. After a month of searching for a diagnosis for fevers and shoulder pain, her parents sought out several doctors and specialists, including an oncologist, for an answer. Amira’s blood work at that time didn’t look like it would point to cancer, and her parents were told to keep looking.
“After two more weeks of pokes, prods and no answers, our pediatrician recommended we get blood work yet again,” Rynish said. “Hearing our daughter has cancer and her bone marrow is packed with cancer cells and 44% of her blood is cancer was devastating.”
They were given the diagnosis that Amira had B-cell acute lymphoblastic leukemia.
For almost 2 1/2 years, Amira needed constant circulation of chemo in her body for the doctors to be confident that every last cancer cell was eliminated. One month into treatment, the staff learned that Amira was a unique case in leukemia. There is no cure currently. Only the best known treatment the medical community has found so far is to give kids the best chance of survival.
Amira was not responding well to this best-known treatment.
“Amira ended up going paralyzed almost up to her neck,” Rynish said. “After pausing treatment with an immunotherapy drug, genetic testing was done, finding Amira has a genetic mutation that causes her to be unable to handle one of the chemo drugs she needed to get well. It became a balance of how much she could handle without possibly paralyzing her permanently.”
Reaching out to other oncologists, Amira’s team contacted those who run world-wide clinical trials and top oncologists at St. Jude’s, to determine if anyone had seen a case in leukemia like Amira.
As expected, Amira lost feeling and function in a large part of her body once chemo was restarted.
“After continued physical and occupational therapy, Amira was able to work incredibly hard to regain her abilities to move and walk,” Rynish said. “This did not come without extreme neuropathy pain on top of endless side effects from the treatment.”
After almost 100 blood draws through a chest port, 46 overnight stays at the hospital or ICU, 17 procedures, a feeding tube and more throughout her treatment and beyond, the entire family and their medical team are celebrating two years off chemo without a relapse.
“We thank God and her entire team at Children’s Hospital that she is with us today,” Rynish said.
After treatment ended, the family began to circle back to as many organizations as possible that helped them along their journey. Amira was most recently the Honored Hero for the Leukemia and Lymphoma Society. She was the face of one of its fundraising campaigns over several months this year.
Traveling to meet with groups in Green Bay and Milwaukee, inspiring the staff and volunteers through the course of their campaign to raise funds, Amira and Rynish spoke to hundreds of people and the campaign successfully brought in an incredible $1.2 million that will go toward family support advocacy and blood cancer research.
“My husband Jordan, myself and Amira have spoken at events for several organizations, including Blood Cancer United, Families of Children with Cancer, Make-A-Wish, Children’s Cancer Family Foundation, Community Benefit Tree and more,” Rynish said.
Their hope is that they can continue to support more and more kids in their journeys and make an impact in the world of pediatric cancer — not only in September, but always.
