Stories of NF: Desmond P.

There’s not a person who doesn’t love Desmond. He has the most contagious personality. He’s a mature, hilarious, sweet, polite and intelligent little boy. I’m certainly bias, being he’s my one and only biological baby, but he’s a very unique little boy. Des was born in Italy in 2011, I was stationed there with the Air Force. He was pretty average growing up, nothing major, no illnesses, little slow on speech but we sort of thought the language barrier in Italy had something to do with that.

We arrived back to the U.S. in 2013 and got stationed in Nebraska. When we arrived, I had Des evaluated for pre-school and they enrolled him in speech therapy. He wasn’t severely behind but needed a little help. At the same time I asked them to check out his walking because I noticed it seemed a little off. They assured me that he walks just fine for a 3-year-old. I also asked his pediatrician if they thought his walk was a little off. Also they told me it was not; fast forward to first grade.

I received a personal email from Desmond’s teacher asking if a physical therapist could have my contact information… which of course I said was absolutely fine. The physical therapist had been at the school helping another child and noticed Des running at recess and said it looked like he had foot drop. I told her what I said earlier about asking when he was smaller if there was something wrong, and I contacted Des’ pediatrician. His pediatrician at this point agreed there was foot drop, also wanted us to go to Neuro because we couldn’t pin point WHY he had foot drop. We waited patiently for an appointment at Boys Town Children’s Hospital; the neurologist physically evaluated Des and said the nerve in his leg was dead, pop a brace on him, and move on with physical therapy. This took me by surprise. I couldn’t wrap my head around why he had foot drop, what had happened? There had to be a reason. Can we wake up the nerve? I was frustrated. I then began my battle with my insurance to approve an additional opinion.

We then waited another 6 months to be seen at Children’s Hospital neurology for the second opinion. The neurologist seemed a little puzzled, and said she thought maybe Des had suffered a small stroke while in the womb. So MRI #1 was scheduled so we could check out his brain. I wish I could go back to this time. This was November 2018. This was before my whole world got flipped upside down. The problems I thought were so big and stressful with work, family, life, marriage, all seem so trivial now. The MRI was only about an hour long; he didn’t have contrast and he was such a trooper! He stayed so still! I was super proud of him. About 3 days later they gave me a call and said to not worry, the brain scan came back normal, however they found something in his right ear and wanted to do another MRI with contrast of his inner ear and his spine. No one said anything about NF at this point. They didn’t even explain what they though the ‘thing’ in his ear was. I thought maybe we were going to find out why the foot drop was there… why are we checking his spine? I assumed better safe than sorry.

This MRI felt different. They were going to need to use contrast, they were going to need to sedate him. Anytime your child goes under anesthesia it’s a big deal. Like always, he did amazing, no complaints. Little groggy when he woke up but before long he was back to being goofy and all was well. Another couple days passed, it was a Monday evening, I was cooking dinner while my husband watched TV and Desmond was happily burning his brain cells watching YouTube. I had never heard of neurofibromatosis until 6:30pm on January 28.

Desmond’s neurologist called and said that his MRI results showed what she thought to be NF2 but would require more testing. I was told to expect radiology to call me for more tests. The phone call now looking back on it, felt so impersonal. Very to the point and left me with no idea what was going on. Being any person in 2019… I ran off to Google. The Google search had me bawling my eyes out within minutes. My husband tried to calm me down but I couldn’t wrap my head about what was going on. How? Why? Not Desmond. Anyone but Desmond. We sent a quick message to our parents and kept it to ourselves while we continued to get testing done. With each new test they gave us more information, preparing us for what we are eventually going to be dealing with.

The MRIs showed a mass in Des’ right ear, his brain stem, a bunch on his spine, and something on his right kidney. We have since then seen every specialist I have ever heard of. His genetic testing came back with no answers. We are 4 full months into knowing the word neurofibromatosis. We still have no fix for Des’ foot drop. We have more testing coming. We don’t know how aggressive his tumors are. We don’t know if/when he is going to lose the hearing in his right ear. We don’t know if more tumors are going to show up. We are being referred to Washington University for more testing and to see NF specialists. My husband deployed April 1^st to the Middle East, so Desmond and I have been flying solo.

While being a full time Air Force member, spending countless hours at Children’s Hospital, trying to keep things as normal as possible for Desmond, things have been hard. I’m so thankful for my medical insurance, I’m thankful for friends and family. Somedays are easier than other days. It’s hard to not think of what road is ahead of this little boy. I’m thankful for the knowledge of his diagnosis, but selfishly I wish I could go back to January 27. I just want to go back to one day before, when I didn’t worry about Desmond’s future.  When I wasn’t scared of surgery. Our biggest worry is that Des wouldn’t be a fantastic dancer. Desmond’s story is just beginning, I know we have a long road ahead of us. Desmond smiles and jokes through it all. He’s the most resilient child I’ve ever met.