When Jaxson Grossman was 3 months old, his mother Colette noticed something strange on his stomach: three little marks that looked like bruises in the shape of fingerprints.
The next day, Jaxson had his checkup and his pediatrician told Colette that the marks weren't bruises. They were "café au lait" marks, which are a sign of neurofibromatosis type 1 (NF1), a condition that causes skin coloring changes and tumors along nerves in the skin, brain and other parts of the body. But Jaxson was healthy, seemed fine, and the Grossmans were told not to worry. Colette's protective mother senses began tingling once again when Jaxson was a little bit older. She noticed something in his left eye looked "off," but she couldn't put her finger on it.
She took her son to Eric Packwood, M.D., a Cook Children's ophthalmologist, and told him about her concerns. While he didn't see anything during his examination, he told Colette that he could order an MRI if she continued to be concerned. Colette took him up on that offer a couple weeks later. After the MRI appointment, Colette and Jaxson had barely made it through the front door of their home when they received a call from Dr. Packwood. "You were right. I don't know how you saw it, but Jaxson has an optic nerve glioma," he said.
And with that, the Grossmans' lives were changed forever. Colette and her husband have two other children in addition to Jaxson, now 9, an older brother Conner (11) and younger sister Scarlett (7). "It was and still is hard for them to understand what's going on," said Colette. "Kids live in the moment. They don't understand life and death. They don't understand cancer or chemo."
Twice a week for two years, Colette and her three children visited Cook Children's Hematology and Oncology Center for chemotherapy, and they were surprised by how at home the staff made them feel. "The nurses and doctors made this little, scary word, ‘chemo,' fun for him," said Colette. "And for Conner and Scarlett. To this day, Scarlett will stub her toe or trip and ask for us to call Dr. [Jeffrey C.] Murray [Neuro-Oncology medical director] or take her to Cook Children's."
The staff's attentiveness to her children became especially clear to Colette on one day in particular. Jaxson had been begging her to take him to chemo, something he actually enjoyed; however, seconds after they began treatment, his attitude changed.
"Jaxson started to say that he wanted to go home, which was just so out of the ordinary," said Colette. She called across the room to Amber Delval, RN, a clinical coordinator in the infusion center.
"She came over, knelt down next to him, and I had barely blinked, before she was up and running across the room," said Colette. "Amber realized that Jaxson was having an anaphylactic reaction to the medication. In a second, she ran to the medication room, almost flying over this room full of people, and started giving him Benadryl®. It was like watching Superman.
"He was so young he couldn't really tell us what he was feeling," said Colette. "But Amber knew exactly what was happening." Although the Grossmans had known from the beginning that Cook Children's was with them in this journey, that day made it abundantly clear – Cook Children's staff are doing more than just a job.
"A job is something where you clock in, do your work, then clock out," said Colette. "You may not even smile. This is completely different. They're here because they care."
Jaxson was cleared as tumor stable after two years of treatment. He lost all vision in his left eye, but not his love for life or his excitement for Cook Children's.
When Jaxson was 7 years old, a routine MRI spotted another optic nerve glioma, and this time, it was threatening his vision in his right eye. Jaxson and his family returned to the medical center once a week for a year to receive his chemo treatments.
Thankfully, to Jaxon and his family, Cook Children's isn't a scary place – it's a place for healing, fun, laughter and friends. In November 2019, Jaxson's tumor disappeared and now the family only visits for MRIs every three months.
"Whenever we come in, Jaxson really wants to make our usual rounds and visit our friends in the infusion center, but I explained to him that we couldn't because of the pandemic," said Colette. "These kids have no immune systems, so it's up to us to protect them." The quarantine period we've all experienced this past year is nothing new for Colette and her family. To keep Jaxson safe while he was receiving his chemo treatments, the entire family took the same precautions that people are doing now to limit the spread of COVID-19.
"We actually had an MRI scheduled at the height of the pandemic," said Colette. "We felt safe. Everyone was wearing masks at the check-in and at the appointment desks, but you could still see that underneath, everyone was smiling."
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