This time of year, folks all over the world are making their lists and checking them twice. In addition to new toys, fun games and socks (well, maybe not socks!), our NF heroes have additional hopes: less chemotherapy, fewer doctors’ appointments, reduced tumor size. At the Children’s Tumor Foundation, we are working relentlessly to fulfill that hope.
When you join the fight to end NF, you are ensuring that those living with NF are closer to a cure. We asked some NF heroes to share their story and their hopes for the coming year.
“My name is Michele and I have schwannomatosis. I am 40 years old and happily married with two beautiful children, nine-year-old Ava and six-year-old Trent, and my third child is due in December 2015.
“My first tumor was discovered after a visit to the doctor in June 2011 for what felt like a painful lump in my throat. I had just signed up for the Philadelphia Susan G. Komen Three-Day 60 Mile Walk with a friend a month before and was busy planning a fundraiser for the summer. After a CT scan revealed a mass in my neck, I was referred to The Hospital of the University of Pennsylvania.
“My doctors did not know what the mass was but they explained that likely my voice would be reduced to a whisper, permanently, as a result of removing it. I prepared by recording my voice and singing my children’s (then ages five and one) favorite bedtime songs so that they would have a memory of what mommy’s voice sounded like before everything changed. I must have stopped and started recording several times as I fought back tears, but I knew how much these recordings would comfort my children so I persevered.
“As my surgery date approached, I continued preparing for the Komen 60 Mile Walk. After all, that’s what a breast cancer fighter would do. There is no choice but to move forward and that was what I was going to do.
“I underwent a successful surgery in September 2011 to remove a 3.9 cm mass from my neck that turned out to be on a nerve that affects control of my tongue, not one that affects my voice as originally suspected. Words cannot describe the utter relief I felt that my voice was spared!
“Just 17 days after surgery, I showed up in the early morning hours of October 7, 2011 to join thousands of other women in their march against breast cancer. Walking only 33 miles but feeling like I walked a thousand, I felt so empowered. I didn’t know it at the time, but that experience was an integral part of my coping and healing process. It didn’t matter that our diseases were different. What mattered was the drive to keep going with life and make the most of it.
“Although my surgery did result in permanent paralysis of the left side of my tongue, I am so grateful. Over the next year I recovered well with barely a noticeable speech impediment.
“Then, in October 2012, at my one year follow-up appointment, an MRI revealed another mass located at the base of my brain. Walking out of the doctor’s office that day, it felt like everything was in slow motion. How could this be happening again? What is going on? What would my future hold? So I decided to do some research of my own. After making contact with a family who lived with NF, I was referred to The Johns Hopkins Comprehensive Neurofibromatosis Center in Baltimore, MD. There, in December 2012, I was diagnosed with schwannomatosis.
“In early 2013, I began searching for support groups for NF, specifically for schwannomatosis. I came across the Children’s Tumor Foundation website and discovered an NF Walk that is held in the Philadelphia area each summer. Then, drawing from my experience with the Komen 60 Mile Walk, I decided to create my own team, ‘Michele’s March for NF.’ My family and friends joined me on a beautiful summer day in June 2013 for what proved to be a very emotional but profoundly healing event.
“I continue to walk each year at the Philadelphia NF Walk. I don’t worry about what my condition will be at the time of the event. Just showing up and being present with all the amazing children and families living with NF is all the drive I need. For a few hours, I am among just a few of the most amazing fighters I have ever met.”
What advice do you have for others facing similar challenges?
“Living with pain and trying a host of different medications in hopes of controlling that pain can leave one feeling defeated, even on a good day. At times it feels like you are living from one appointment to the next, waiting with baited breath to see if your scans reveal a new or worsening condition or are clear. Will I need surgery this time? What deficit will I have this time? What will my quality of life be? Will my children be affected by this disorder? There are so many unknowns with NF, as in life, and it’s easy to let your mind wander. However, I have learned that living each day to its fullest and finding the joy in everyday life is the best way to make it through those very trying times. There are so many more things in life that I have been blessed with and that is what I choose to focus on. I won’t let NF define who I am. Most of all, it helps to know that I am not alone.”
What’s a success or accomplishment you’re really proud of that happened this year?
“In 2015, with the help of my NF Walk team, I successfully raised $1,390 for NF research!”
What are you most looking forward to in 2016?
“I can’t wait to watch my new baby girl grow and to experience all the joy that she will bring to me and my family.”
What’s one song that you never skip on your playlist?
“Like many illnesses, living with NF is nothing short of a roller coaster ride of unknowns and emotions. A song that has a special place in my heart is ‘I Won’t Let Go’ by Rascal Flatts. It happened to be playing on the car radio when I drove home from the doctor’s office after learning about my first tumor and it has been a comfort to me on my journey with schwannomatosis.”
In your own unique way, you can make a difference in the lives of the millions of people worldwide with NF.
Be the one to step up, to make a gift, to educate others… and to play a critical role in the mission to end NF.
Click here and Be The One
