On January 9, 2019, I brought Audrey to her pediatrician, who quickly sent us to the ER. Within hours, an oncologist told me that our 21-month-old daughter had a large tumor in her abdomen. Then after only 5 days on the oncology floor, she was admitted to the Pediatric ICU (PICU) because of bleeding complications from her tumor. Audrey stayed in the PICU for 28 days, and 20 of those days she was on a ventilator in a medically-induced coma. Audrey underwent multiple emergency procedures because her tumor was bleeding into her belly, which is not normal for neuroblastoma. They tried so many things to control the bleeding, including an embolization, dozens of blood and platelet transfusions, multiple abdominal drains, and two rounds of emergency radiation (which required transport to another hospital and back each time).
During her time in the PICU, she almost died due to a massive bleeding episode that the nurses and doctors just barely controlled in time. She received emergency radiation on a Saturday as a last resort, but thankfully it worked and stopped the bleeding from her tumor. Once the bleeding stopped, she was able to start to heal and was woken up from her coma and eventually transferred back to the oncology floor.
In total, her first hospitalization (starting on January 9th) lasted 56 consecutive days and included her first three cycles of chemotherapy. During that hospitalization, Audrey had to re-learn how to sit, stand, and when she was discharged, was in the process of learning how to walk again.
Audrey went on to have the full course of neuroblastoma treatment: 5 cycles of chemotherapy, surgery, stem cell transplant, radiation, and immunotherapy. She is now on a 2-year maintenance therapy medication that will hopefully keep cancer away forever.
Audrey finished frontline treatment for neuroblastoma in March of 2020 and is coming up on her 6 months scan. Since January of 2019, we have added a baby brother, Everett to our family. I actually found out I was pregnant with Everett six days before Audrey’s tumor was found. I stayed with Audrey through every inpatient growing more and more pregnant, and Everett came to the hospital with Audrey and myself for all five of her immunotherapy cycles, starting at 3 weeks old. Audrey also has an older sister, Clara, who is now 5. Her sister and brother have been through so much too. We know being together is the biggest gift, even in the midst of a pandemic.
Cancer has changed our perspective on everything in life. We have always loved our children and cherished them. Cancer taught us though, that nothing is guaranteed. We almost lost Audrey in the PICU, several times. The doctors pulled Hail Mary’s and it is a miracle that she is still alive. So we celebrate everything. And the things we might have little or big things we might have worried about before, we don’t necessarily worry about anymore. We know that the most important thing is being together, loving each other, and making sure our kids know we love them with all our hearts.
Hope session by Marie Monforte Photography | Facebook | Instagram