Overcoming Our Fears

INTRO
I am mom to NF Hero, Jesse Markland. Jesse is now 4 years old and has Neurofibromatosis (NF1). This means he has multiple café-au-latte spots, about 20 – 30 dermal neurofibromas (small tumors), 1 plexiform neurofibroma (more complex tumor), an optic glioma (brain tumor behind his left eye), his legs often hurt for an unknown reason, nerve pain across his shoulder blades that causes him to scratch and dig at his skin until he bleeds and scars, and chronic/severe nerve pain at the back of his head. Even though one of his NF symptoms is a brain tumor, Jesse’s worst NF Manifestation is the head pain. Our life revolves around his head pain 24 hours a day, 7 days a week. It is so severe that without medication and a nerve block procedure that has been done, Jesse’s head is unable to be touched. Raging cries of pain do not begin to describe what he has gone through. He takes a liquid pain medication 3 times per day, two additional pain pills at night, and he is now scheduled to get regular nerve blocks (which is surgery for a small child)to numb the area of the painful nerves. He is only four years old. Not long ago, someone told me that Jesse must have walked into a nest of mosquitos, he had bites all over him. My reply, “no, those are tumors”.

WHAT’S THE WORST NF MANIFESTATION?
We have been going through this highly emotional journey for about 2.5 years now and it has led us down many roads. Recently, the topic of “what’s the worst manifestation of NF” has come up in different conversations. I had to think about that, but really only for a moment. I think the first answer that comes to mind is obvious physical deformities caused by tumors. Others might say learning disabilities. Someone that has had their leg amputated may say bone density. Someone that has lost their vision or their hearing would most definitely cite their loss as the worst manifestation. For the families left behind, malignancies that have taken our loved ones, far too early, would most definitely top the list. NF is a progressive disorder and it affects everyone in a different way, all of the scenarios above are a possibility to anyone with NF. Most people are diagnosed with NF but have never heard of it and definitely don’t know anyone else that has NF; what a lonely, desperate feeling. Whatever the manifestation, the unknown and very likely silent attacks beneath the surface of the skin is __________ - there is no word to describe that fear. I personally believe that it’s the isolation and the fear which are the worst manifestations. These are two manifestations that are basically unrecognized but are the only manifestations that truly bind the NF community together. EVERYONE with NF, and anyone that loves someone diagnosed with NF, have all felt that isolation and fear.

HOW WE GOT HERE
This was the case for me when Jesse was diagnosed and I felt so very alone and incredibly terrified. I personally hope that no one has to learn about NF the way I did. I knew that something was gravely wrong with my baby, but I couldn’t REALLY get anyone to listen to me. I had to fight for him to get him diagnosed – I was determined to find out what was wrong and FIX it. Well, I eventually learned that there is no “fix”. But leading up to that point, I had a phone call from my doctor while in the recovery room after an MRI saying my son may have Neurofibromatosis. Neuro – what? A nurse wrote it down for me and sent us home, neurology would see him in 2 months. At home, alone, with Jesse sleeping in his crib, I googled this horrific word and learned what the internet had to offer me about Neurofibromatosis. I was alone, sitting at my computer. There were plenty of graphic pictures to offer this mother and they were all I could see while I watched my baby sleep. When I saw those first words associated with Neurofibromatosis – The Children’s Tumor Foundation, those words nearly destroyed me. I sat at my computer, alone, and learned that those bumps all over my son were tumors and that there was no treatment and no cure. This only happens to other people, not MY son. I felt so alone and was definitely led astray on-line by those pictures. As Jesse's parents, we are already terrified beyond what anyone should ever have to imagine for what our sweet little guy may face in his future in addition to what he has already had to endure in his short little life.

BREAKING THE CYCLE
After digging deeper; today those words, The Children’s Tumor Foundation, are the very words that offer me hope. Fear and Faith are two very powerful emotions and it is a matter of choice of which path to follow: Succumb to the Fear or have Faith in a higher power and Faith in the programs created by the Children’s Tumor Foundation that are feeding the research that I truly believe will defeat this monster called NF. We did not give up, we found a community through the Children’s Tumor Foundation and now we do not feel so alone. When the phrase No Treatment and No Cure enters your life; your whole world shifts focus. Where there are options, is how we decide to allow it to affect their lives. There are programs like Racing4Research (www.racing4research.org) or the NF Endurance Team (www.ctf.org) that give an outlet to cope, fight this disorder, and find each other versus staying at home and surrendering to this monster. There is a powerful way to connect with each other by sharing our inner struggles and coming together to persevere as we face the unthinkable. We must find a way to live with NF; but NEVER to surrender to NF. In the face of adversity, fear, and no hope; there are options to stand up and fight for a better outcome.

When I was a teenager I once found myself in a horrible situation, I learned in that very moment that fear is the most powerful human emotion in existence. I didn’t know at that time, but I had no idea what fear was until I was faced with my child being diagnosed with NF. I fight every minute of every day not to succumb to that fear. I have to remind myself repeatedly that this is no time to fall apart, my child needs me to fight for him. He needs me to be involved in these programs and do everything in my power to add funding to this research. It’s his only hope. By being involved in these programs, an added bonus is he is no longer only an NF patient and sufferer. He is an NF Hero. He will not only remember his childhood spent in a hospital or on constant pain medication – he’ll remember the amazing feeling of being the star at the Daytona International Speedway, sitting high upon a driver’s shoulders. Like we were all just there for him, acknowledging his brave battle.


My apologies if my thoughts are scattered at times, navigating the war with NF is sometimes a very tricky maze. Many times when we hit a wall in front of us, we have to double back and try another way to either convey our message or find the right path towards our end goal; ending Neurofibromatosis through research.

Jill Markland
Jesse's mommy