FORT WAYNE / INDIANAPOLIS (WISH) — Cancer, COVID-19 and now a mission to help find a cure for childhood cancer. An Indiana toddler’s fight for life this year puts 2020 into perspective.
Ruby Grimes turns 2-years-old on Wednesday, the last day of September, which is fittingly Childhood Cancer Awareness Month. Now, her family wants a birthday wish of more childhood cancer research.
“She is a little warrior! This girl would get chemotherapy and be running around the hallways going from room to room saying hi to people,” said Ruby’s mom, Kali Grimes.
Cancer can’t stop Ruby’s spirit, but, on Jan. 1 of 2020, it did slow her down.
“New Year’s day, Ruby woke up screaming and she couldn’t walk. So I took her to the hospital,” said Kali.
Kali is a registered nurse in Fort Wayne, so she knew something was very wrong. Ruby’s pediatrician said the family needed to take her to Riley Hospital for Children at IU Health, where the doctors confirmed Kali’s worst fears.
“They said they found a 10-centimeter tumor in her belly that had wrapped around all of her vital organs. And it was something called a Neuroblastoma,” said Kali.
The cancerous tumor also caused a rare disorder called Opsoclonus-Myoclonus Syndrome, better known as OMS.
“Only 3% of kids in the United States ever get this, so it is super rare,” said Kali. “It was causing her not to be able to walk. It was causing this rapid eye movement in her eyes, and she was in uncontrollable pain from the nerve cells.”
Ruby received eight rounds of chemo, each for eight hours. Ruby’s parents said they were lucky at the time to have friends and family surrounding them. However, once the COVID-19 pandemic started, only one parent could go with Ruby to treatments.
“Sol would go to the window and he plays the guitar. So, he would play music outside the window and see us through the window,” said Kali. “So we found ways to be creative. But that has definitely thrown a curveball for sure. And then Ruby got COVID, the first week of September we all did. So we are like oh 2020.”
Kali said they couldn’t live in fear of the coronavirus pandemic, they had enough on their plate. The family instead focused on faith.
“Our faith has literally gotten us through the hardest times. And so we have just had a community of people praying for us,” said Kali.
The family said they received prayers and people reaching out from around the world. Along with the Gospel, Kali said she wants to spread childhood cancer research awareness.
According to the National Pediatric Cancer Foundation, every day 43 kids in the United States are diagnosed with cancer. The foundation said cancer is the number one cause of death, by disease, among children. More than 95% of childhood cancer survivors have significant health-related issues because of current treatment options and only 4% of the billions of dollars spent annually on cancer research goes toward treating childhood cancer.
“These kids are our future. And I just think they deserve more than 4% of cancer research,” said Kali. “They get the same chemotherapy that adult patients get. They have never created chemotherapies that are based toward children and the problem with that is that children are developing so rapidly, versus adults, when they get chemotherapy.”
Kali is urging people to do their own research and push for funding. Donations and research can be done with many different foundations including the National Pediatric Cancer Foundation and the Pediatric Cancer Research Foundation.
Ruby is now officially in remission. However, she still has a small tumor that must be checked every three months and she will live with OMS for the rest of her life. Still, Kali is thankful.
“I just feel like this year has been such a blessing in the fact that I know what is important,” said Kali. “I am able to enjoy every moment of her life, because, I know how precious it is and that she really is a miracle and the fact she is still here with us, is so special.”
If you’re interested in helping Ruby’s family on this journey, donations can be made at this GoFundMe.