In honor of Pediatric Cancer Awareness Month, we are featuring some real life stories on the blog. Our aim is to put faces to names and learn about the reality of this dreadful disease. Please share this story with others, and let’s bring attention to the stories of these families. Please remember to give if and when you can to the charities that help these kids. If you have a story to share, please do feel free to send it to me at [email protected]
Today we feature the story of Alyssa and her daughter, Gabrielle.
My husband and I first noticed that something was off when Gabbi was about 4 or 5 months old and was awake more often. Both of her eyes would wobble constantly. We thought it was just normal eye development, but decided to ask her pediatrician about it at her next appointment since it was coming up. Her doctor said she wanted to get a neurologist and an ophthalmologist’s opinion and referred us to two wonderful doctors at Geisinger Medical Hospital in Danville, PA.
The neurologist had said that she was as normal as any other child her age since the range of normal was so broad, but that if we had any other concerns, to see him again. The ophthalmologist, on the other hand, didn’t like what he saw. He diagnosed her with having Nystagmus which is wobbling of the eyes and said that her right eye looked washed out and pale, when it should be a nice pink vibrant color. He set her up to be scheduled to have an MRI.
She did wonderful with the MRI. Her dad and I were feeling so positive that everything was going to be fine and that if Nystagmus is the worst thing she has, then there’s no real worry. It will all work out.
The evening after the MRI, I remember getting ready to sit down at our dining room table to eat dinner and the phone rang. It was the office of pediatric oncology. The woman on the other line was calling to tell me that they found something on the scan. She said it was a tumor on my daughter’s optic nerve and that a doctor would be calling me the next day to set up an appointment to talk to us about our next steps. I was very calm on the phone. I hung up and my husband came into the room and I just collapsed into his arms and cried. I don’t think I’ve ever been so afraid in my life.
Our first appointment was just a consultation. Telling us what to expect, giving us more info on this type of tumor. We also were able to look at the scan so we could see it. She has an optic pathway glioma which is very common in a genetic disorder called Neurofibromatosis. About 90% of children with this type of tumor have this disorder. Gabrielle is one of the 10%. No one knows why she has the tumor. One of her oncologists said that in his 22 years of doing this kind of work, Gabrielle is his first patient that has this type of tumor without the disorder. As it turns out, the tumor is the reason for her Nystagmus.
We learned what her treatment would be and how often and the estimated duration. She was to be on two types of Chemotherapy, starting with ten weeks straight and then going for four and having off for two. We were told we’d have to do this for about a year, maybe longer depending on how she responded. It was a lot to take in. We were overwhelmed and concerned for our daughter’s health. We knew we had to get through it together as a family though. We worked out our schedules with our supervisors at work and decided that Fridays we would devote to going to the hospital, to not only be there for our daughter, but also support for each other. We made an appointment to get her mediport surgically implanted the very next week. Her surgery went really well. I was a wreck though. I was just very emotional in the beginning of all of this. I cried when they sedated her for her MRI the first time too. She recovered really well from the surgery.
She was delayed with gross motor development. She didn’t roll over till she was 5 months old, didn’t start crawling until she was probably around 8 or 9 months and with the help of physical therapy, was able to walk completely on her own when she was 27 months old and graduated from the Early Intervention program in April of this year.
Also after a year of chemotherapy which included long days at the hospital, an allergic reaction to one of her chemo drugs which terrified us, another incident in which as she was receiving chemo she rolled over in her sleep and pulled out the IV just enough that the drug started going into her muscle tissue and not into her port which again terrified her mother and father and the nurses and then many sick days where we had to rush her to the ER for fluids and antibiotics, she was finished with the treatment in March.
She got an MRI in May 2013 that showed that it had shrunk, then another a few months later that showed no change, then right after she finished treatment, that scan showed that it had shrunk again. She still has a little bit of Nystagmus in her left eye, but her ophthalmologist said her vision looks really good. She still has the tumor and may always. She will have to have an MRI scan every 3 months to make sure that the tumor hasn’t started growing again. She will have to do with up into her teens because as she grows, the tumor could start to grow as well.
But now, after everything she’s been through you’d never even know. She’s completely caught up to her peers with development. She’s very bright and so much fun. I don’t think I have ever met any other child as happy as she is. I’m a very lucky mama.