From birth, Gemma has been the most easy-going baby. She is pure sunshine and smiles. The Friday before Easter I noticed her eye weeping a bit and thought she may be developing pink eye. I called her pediatrician who suggested just keep an eye on it. Over the weekend, I began to notice some swelling surrounding her left eye. I continued to consult with her pediatrician regarding her developing symptoms. Over the course of the next two weeks, her swelling began to extend into her cheek as well. I began to notice some hyperopia and eventually some nasal congestion. Gemma never appeared bothered by the symptoms, but by the time she developed congestion she started to have trouble sleeping at night and became fussier. Mother’s intuition told me something wasn’t quite right. I was either on the phone with the pediatrician or in their office several times during those two weeks. We also made an emergency visit to a pediatric ophthalmologist as well as the emergency room at the local Children’s Hospital but never received any answers. I knew after two weeks I couldn’t let it go any longer without knowing what was going on, so we decided to take Gemma to a research hospital that was about an hour away. She spent about a week in the hospital receiving multiple tests before we found out she had myeloid sarcoma presenting in tumors within her maxillary sinuses.
Gemma is a fighter. Over the last 4 months, she has endured a plethora of MRIs, bone marrow biopsies, spinal taps, PET scans, x-rays, ultrasounds, echocardiograms, blood draws, a biopsy of her tumor, a surgical procedure where she was placed with a broviac line and has received countless medications. She is currently in her third of five rounds of chemotherapy. She has received numerous chemo infusions as well as intrathecal injections of chemotherapy since her journey began in April 2021. As a result of her depleted bone marrow, Gemma has received countless blood and platelet transfusions over the last four months as well.
Because of Gemma’s age and chemotherapy protocol she remains in the hospital during her treatment. Typically we spend anywhere from 37-48 days in the hospital for each session of chemo. This means she is separated from many family members and friends and even during brief breaks at home she has not seen most of her extended family in months due to her being severely immunocompromised. She has a 2.5-year-old big brother who misses her and me dearly while we stay in the hospital for such lengthy periods of time.
Like most families affected by cancer, our world has essentially been turned upside down since her diagnosis in April. Gemma is the strongest and bravest little girl and has tackled each round of chemotherapy and the many other scary procedures associated with her cancer like a true little warrior. We have spent around 100 days in the hospital since her diagnosis. Since the birth of her big brother in 2018, I have been a stay-at-home mom. One of the biggest challenges and changes we’ve experienced over the last 4 months is not being together as a family. Gemma and I (mom) live together at the hospital while she goes through treatment. It, unfortunately, means limited interaction with her big brother and dad. Seeing her big brother at most once a week or at times once every other week is gut-wrenching. I miss having both my babies under one roof and the seemingly simple things about everyday life together.
Gemma has endured far more challenges in her 9 months of life than I wish she had to. She is strong. She is tough. She is absolutely beautiful. She is a fighter. We are so hopeful that by the end of this year we will be done with her cancer treatment and back to living under the same rough as a family again.
Hope session by Cynthia Dawson Photography | Instagram | Facebook