The story of Salina
One day when I was around 7 years old, I was playing with my grandpa. He was tickling me when he noticed a bump on my arm. He got mad — he worried that my dad or my bonus mom were beating me. My dad was a super laid-back parent, so he explained I probably got a bee sting or bug bite.
After that, my bonus mom kept an eye on the lump as she helped me shower. When it didn’t go away, my parents brought me to the pediatrician, who immediately realized that something was wrong.
The next year of my life was full of tests and appointments. I had to lay in a weird machine that I now know is for CT scans. I had countless blood draws — so many that my dad told the nurses to stop. Despite it all, I had a child’s attitude, believing that everything would be OK.
I was diagnosed with neurofibromatosis — or NF. It’s a condition that causes tumors to grow on nerve cells throughout the body. About half of cases of NF happen because of a spontaneous gene mutation — that’s what happened to me. No one else in my family had NF.
The lump that my grandfather had spotted that day was part of a cluster of tumors under my left armpit. Because of their position, they were very difficult to get to. Doctors explained to my parents that I needed surgery and there were two options: they could slice into my chest, leaving me with a big scar, or slice into my back, which could cause back pain down the road. My parents opted for the second option.
On the day of the surgery, I wasn’t scared. But I could see that my parents and my big brother were terrified. The only time I worried was when I came out of surgery and saw them all crying — I thought something was really wrong. Later on, the pain from surgery hit.
I had another surgery in middle school and one in high school, both to address tumors in the same area, the left armpit. I had lots more surgeries on that arm as an adult, so today, I have a lot of nerve damage in my left arm and hand. I could get a burn and not flinch. I also needed surgery on my spine.
In my 20s I started having seizures. At first, I didn’t think they were related to NF. I just thought I had to stop partying since alcohol seemed to trigger them. But I later learned that NF was the root cause. Still, I vowed to stay away from alcohol. I tend to log everything about my life because it gives me more information to help me manage NF.
I knew what having children came with risks
I knew that there was a 50% chance that any children I had would have NF. But that seemed like a distant worry, since I didn’t even know if I could have kids. Then my miracle happened: my son.
When I was pregnant with him doctors urged me to get genetic testing. I knew I would keep the pregnancy no matter what the tests showed. I decided to wait — why worry during pregnancy about something that I couldn’t do anything about?
In a perfect world, I might have opted to do IVF to screen embryos for NF. Yet, as parents, we never fully know what’s coming at us — my spontaneous case of NF shows that. I might have had a child who didn’t have NF, but who struggled with asthma or another health condition. In the end, I’m so grateful to have the child I do — my Tyler.
My son was born early and needed to spend 10 days in the NICU. There, a doctor told me they thought he had NF. He had cafe au lait spots, or flat brown spots on his skin, and a large head, which are markers for NF. Still, I didn’t want to accept it. I insisted we see a specialist. That doctor confirmed what the NICU had already told me. Tyler had NF.
Today, Tyler is 9, and he hasn’t had any tumors yet. I’m grateful for that. He struggles with ADHD, which is more common in kids with NF. I know from my own experience that Tyler’s NF might change as he ages, so I’m prepared for that.
I never had anyone in my family who really understood life with NF. I’m glad that Tyler has that. I never think he’s overreacting when he complains of pain or fatigue. I model good self-care for him — in fact, we’re going to the doctor together next week for our twice-yearly checkups.
Since having Tyler I’ve worked full-time, graduated college with honors, and learned to manage my health condition. I want him to know that he too can be strong, just like his mom.