The Time is Still Now for NF – 4 years later

 

    I’m not here to share my son’s story of living with neurofibromatosis. Jesse’s an adult and his story is not mine to tell. But I have my own story. Mine is the story of a mother who raised a child and supports an adult living with NF1. My story is about advocacy on many levels, unabashed fundraising, spreading awareness however possible, and most importantly, about unyielding hope.

    Four years ago, just after Koselugo was FDA-approved as the first treatment ever for children living with NF1, I wrote a blog post sharing my perspective of promise and enthusiasm and demanding action by everyone affected by NF. That day, I wrote from a place of deep longing for a movement that would begin shaping a more promising future for Jesse and the 4 million other people worldwide like him.  I also personally vowed to deepen my own commitment to doing my part. I’ve never been one to sit on the sidelines waiting for someone else to make change, but on that day, I pledged to step up my game.

    Since April of 2020, there has been a shift. More researchers are interested in NF, pharma companies want to invest in treatments for NF, and more people are digging deep and resolving to be a part of the successes.  Here’s what I know has changed...

A second drug is awaiting FDA approval, this one to treat children and adults with NF1.

A topical cream to shrink cutaneous neurofibromas (tumors on the skin) is entering phase 3 of clinical trials and is highly likely to be approved in the next 2 years.

The first NF platform trial for NF2-SWN is significantly shortening the process and decreasing the costs of drug discovery.

There are momentous advances using biomarkers, which have tangible outcomes for my son and so many others. Imagine knowing that a tumor is more likely to become malignant just from a blood test! No unwarranted scalpels or risky surgeries. Developments using AI and gene therapy are not far behind.

NF is becoming known. It used to be unheard of to tell someone about my son’s diagnosis and be met with a nod of understanding. More and more, I am hearing, “I know someone else with that” or “I heard about that.” And because more people know about it, more people will want to help, which will translate to more research dollars, more clinical trials, and more FDA approvals; in short, more options.

    Recently, the grandfather of a young man living with NF told me that he appreciated my work and he looked forward to working together for many years. I responded that I hoped it wouldn’t be too many years. I said, “Let's just end this thing and put me out of a job.” For the first time in my 27 years on this journey, I can actually visualize that day. 

    We are closer than ever before and because of that, The Time is Now, it’s still now, it will be that time until the day comes when mothers, fathers, grandparents, families, and friends of those who so courageously fight this battle can live out their days free from the fear and anxiety of not knowing what’s next. I am forever hopeful that my son will know a life like that one.

Dear Potential Future Daughter-In-Law

 

I was in the coffee shop today, sitting across the table from this handsome and earnest young man, when I was inspired to write this letter. We came to work on his resume and perfect his cover letter so that he could land that entry level position after completing his education and becoming a licensed Vet Tech last fall. We were surrounded by young women, sipping coffee, scrolling on their phones or typing on laptops, in groups of two and three, and each completely oblivious to the presence of this young man; the man of the dreams that they don't even fully understand right now. 

Dear Potential Future Daughter-In-Law,

Find the nice guys. They are going to be the ones who you want to be with in the end, trust me. The bad boys may seem appealing now, but they will always be bad boys and they will hurt you, repeatedly. If you’re looking for someone to be in it for the long haul with, look for the young man who treats you respectfully and like the precious and beloved person you were raised to be.

He may be quiet or even socially awkward and he may not appear confident because of this. But chances are that he’s far more confident than the puffed up, arrogant, jackass who seems attractive to you right now. He will probably not even be the one to approach you first. He has far too much respect for you to think he’s even in your league. You may have to be the one to make the first move, but it will be worthwhile and you’ll always have that story to share at dinner parities and to tell to your future kids. 

He will likely have deep affection for his parents and will value his family. This will make him the kind of father that you will want for your future kids. It doesn’t make him a mama’s boy, it makes him sensitive and connected, in a healthy way. The kid who is trash talking his parents and saying, “f@©k the establishment,” may seem weirdly radical and exciting in this moment, but believe me when I tell you that he’s not the man your future self will want making decisions that impact the well-being of your family. And his lack of respect for authority will eventually destroy every relationship he has. It will.

Talk to the understated young man who took the time and made the effort to better himself through education or training that would provide more income stability. He may not have much experience with dating because he was focused on his future for a while and he may not be flashy and able to sweep you off of your feet, but who told that you shouldn’t remain firmly on your feet in a relationship anyway? That other guy, the one who says all the "right things," who has been around the block a few times…it’s only a matter of time before he’s bored and he’s moving onto the next block and saying those things to another unsuspecting young lady. 

Look for the guy who isn’t driving the fancy car or wearing the expensive clothing because he’s probably more concerned with saving his money and building his future than he is with appearing impressive. He’s the responsible one. He’s got a plan, and things like providing for a future family and buying a home are more important to him than they are to that pretty boy sitting behind the wheel of a flashy sports car. In fact, he’s probably even thought about things that seem so distant...like retirement and how to enable his wife to be home with their kids instead of at work and daycare, if that’s what she wants. And he’s spent time thinking of these important things before he’s even gotten a job or gone to school. He’s the guy you want in your life when you’re old and earned the right to be comfortable in life. He’s the one who won’t leave you alone to fend for yourself after you’ve given him everything of yourself.

Lastly, this guy, the respectful, kind, stable, and responsible young man I’ve been describing, he does not need you to be flashy and fake either. In fact, he doesn’t want you to be. He prefers the natural beauty that comes from being an empathic and genuinely caring person. He won’t be looking at the girls with their tight clothes and all their things popping out all over the place because he’ll only have eyes for you. He will be attracted to your honesty, your devotion, your kindness to others, to the things that make you a good person, not things that make you a trophy. But the funny thing is that you will feel like a trophy because he will cherish you and love you like you never imagined you deserved to be cherished and loved. And that will guarantee that I too will care for you deeply. We will be great friends!

With love,

Your Potential Future Mother-in-law

A Whole New World – Transitions

 Take a deep breath... hold 1, 2, 3...repeat

When your baby is born with a lifelong, progressive, genetic condition, you learn quickly, and often without realization, how to navigate the medical system. You become a strong advocate for your child and you find that you will stop at nothing to protect his interests. It becomes a part of your own identity, as it did for me. My son has neurofibromatosis, type 1 and I’m an NF Mom. Neither of those facts will ever change, however, once he became an “adult” in the eyes of the system, my role suddenly and swiftly, changed so completely. To clarify, my role shifted in respect to the system, but in my heart and in my brain, being his champion hasn’t changed one iota.

In our case, the changes were a bit delayed because his medical care was paused during the global pandemic. We had already made the decision to transition his care to the adult NF Clinic at Johns Hopkins in Baltimore, MD prior to the start of the pandemic. We loved his team at Children’s National Medical Center and he had great care there, but at some point, being in a room with cartoon characters on the walls and waiting areas filled with young children limited his ability to feel grown-up. They would have continued to see him there for many years, which we were grateful for. I’ve heard others’ horror stories about being cut off suddenly at the age of 18 and scrambling to find alternative care. We feel fortunate to be relatively close to an adult center of care and saw the opportunity to establish him as a patient there just as the world hit the pause button and maintenance care slowed to a halt. When things started to reopen, our emerging adult was navigating the final phase of his education with a hybrid model of online lectures and in-person labs. He was focused on his goal of graduating as a licensed Veterinary Technician and because of NF, that was enough at that moment. With NF-related learning challenges in addition to the adjustment to online learning and finding his way while living apart from his family during the everchanging pandemic landscape, his hands were full. Because it’s important with NF to have regular check-ins due to the progressive nature of the disorder, this meant that he would have some catching up to do after graduation.

Despite every obstacle thrown his way, he did in fact achieve graduation and just a few months later, he passed his licensing exam to become a certified LVT! And without a moment’s rest, he began the process of managing his own care, with so much to coordinate at an out-of-town facility. Without hesitation, he rose to the challenge and mostly independently started transferring records, scheduling appointments, setting up MyChart, and getting the ball rolling for his transition. Of course, he had questions, needed input based on my ability to transport him, and on occasion, put me on speakerphone with someone who was impeding the process. He was learning and I quickly realized he’d been learning all along, I just hadn’t seen it clearly. I started to recall times when he’d truly been his own advocate and understood that he’d picked a few things up along the way. Understandably, twenty-four years of care had prepared him for this day.

I remember a time when the pediatrician had noticed something night quite right, which resulted in a visit to the urologist. At the time, we lived in a city that did not have an NF Clinic and we had to see someone without much experience in the world of neurofibromatosis. The provider examined him and fumbled through the appointment, bringing in a few of his colleagues to provide their opinions while subjecting, a then pre-teen boy to some pretty humbling stuff with his mom sitting just on the other side of a curtain. When the examination was finished and I’d rejoined them, said provider proceeded to reach out to shake my son’s hand. Without taking a breath, the immediate response to this was, “Aren’t you going to wash your hands?” After he washed up and regained his composure, the doctor began to explain what the next steps should be and outlined a plan for exploratory surgery. At just 12 years old, my son listened respectfully and then asked, “Don’t you think we should do an ultrasound or something before we think about surgery?” Bravo, young man! You were indeed learning how to self-advocate all along and here were two powerful examples of that!

Within a short period of time, this incredible, resilient, remarkable young man had a visit with the clinic coordinator scheduled and afterward proceeded to schedule 4 MRIs, an ultrasound, and set up new patient appointments with a plastic surgeon, neurologist, geneticist, and a neuro-ophthalmologist. It wasn’t easy and there were a few that needed to be rescheduled. He had to learn about things like how many days apart you need to schedule scans with contrast and how many areas can be included in one scan, but he dove in and he got it all done. This was a huge step forward in his transition to adulthood and adult care and he surpassed my expectations. 

After the consultation appointments, there was additional follow-up, which he also managed on his own. He scheduled surgery to remove several dermal tumors before they could get any larger and as a result had to coordinate a pre-op visit and a COVID-19 PCR test. In addition, he reviewed and consented to take part in a full-body MRI study for early detection of MPNST. And he’s since had to schedule and reschedule follow-up scans as well as the surgery date and PCR test date. Surgery day was the icing on the cake for this new world of transition.

We drove up to Baltimore a few days before so that the COVID testing could be done at a Johns Hopkins facility. The day before he was to report to the outpatient surgical center, he received a call from one of the staff to review the instructions and preparation. He put the phone on speaker and let the nurse know that his mom was also there. She asked a few questions, which he answered, and then she asked which part of his body would be operated on. He stumbled a little and I pitched in, to which the nurse said, “I’d prefer to hear directly from the patient when possible.” Well okay then. Touché and thank you for your insensitivity by putting this fragile, feeling-a-little-less-relevant mother of a 24-year-old on notice. In hindsight though, that was good preparation for what was to come on surgery day. 

The reality was that because of COVID and surging cases everywhere, the surgery center waiting room was closed. They were not permitting adult patients to have anyone with them during procedures. This meant that I would have to drop my son off and drive away to wait it out...offsite...alone. I went directly to my social media for support: 

"What a strange feeling after a lifetime of being his advocate/his champion and holding his hand through every appointment, every scan, every procedure, every surgery. Today is surgery day and this young man is practicing his independence, maybe a little more quickly than he would have in our pre-COVID world. He was so brave and flashed that famous smile of his to reassure ME just as he turned to go inside…alone. I blinked and the tables turned. I’m currently processing all of the feelings that go with this transition, and there are so many.”

And then I started writing this blog. Granted, I’m finishing it a few days afterward, but blogging is my way of processing and coping with the conflicting emotions of being less relevant in my role as his caretaker and being so incredibly proud of the man that my child has become. One of my very inspiring friends, someone who has been to Hell and back, responded to my social media post with, “I'm so sorry you have to experience this.......and even more sorry for Jesse. But he is so brave! So full of strength and life! You helped cultivate that. You have to feel pride and joy somewhere under the fear and darkness.” Which is exactly what I needed to hear at that moment. I had indeed prepared him for this day and in the process, I’d prepared myself too. My role may have changed, but I am prepared to champion him and his cause for all of eternity. This leg of the journey is a little uncomfortable because it’s unfamiliar territory, yet I have a feeling that the pride I feel in his ability to handle everything that comes his way is what is going to get me through this and everything else that follows.

Big Steps, Small Victories

From the moment a baby is born, we begin the preparations that will gradually, over the following 18-21 years, if we did our job well, lead to adult independence. When the baby is diagnosed with a neurologic genetic disorder and the list of possible manifestations includes some pretty scary stuff, the normal course of events naturally gets cloudy.  For many years, I did not know that my son would ever become an independent adult. Today, I waved from the front porch as he nervously drove down the driveway toward his first rented space away from home, a very big step. When he was out of view, I went inside and melted into a puddle of tears and uncertainty on the foyer floor.

He was just 6 months old when the neurologist confirmed the neurofibromatosis diagnosis. I was told to take my baby home and love him and enjoy him. He said, "Don't search it on the internet. You won't like what you see." There were no treatments and there was certainly no cure, so the only option was to watch for changes and wait for symptoms.  He even sent me a packet of information with a note taped to the front page, which let me know that there would be no purpose in actually reading any of it because it wouldn't change the outcomes, it would only cause me more worry.  He didn't tell me what to watch for and he didn't mention how long we would have to wait. I actually did not read the packet of information, I tucked it into a drawer and left it there, but I found a pamphlet inside from the National Neurofibromatosis Foundation (NNFF, now Children's Tumor Foundation) so I visited their website and found our community.

The first 3 years of his life were a blur of missed milestones, evaluations and therapists. NF not only causes tumors, deformities, chronic pain, deafness, blindness and increased risk of cancer, but 60% of the cases come with the added bonus of learning disabilities and developmental delays.  Our only power was in our ability to be proactive about his learning and do everything we could to stack the odds in his favor. Therapists came to our home for the first 18 months and he began in a developmental preschool by age 2. From then on, he went to school, on a bus, 5 days a week and received physical therapy, speech and language therapy and occupational therapy as well as small group instruction. He continued to have regular therapies and specialized education throughout his school career right up until 12th grade graduation. He had 12 month programming for many of those years and the evidence of success came through the school reports which documented progress.  He didn't spend his summers learning sports or enjoying sleep away camps, he spent them cementing his learning and struggling against regression. 

Does that mean our son missed out on being a kid? In some ways he did, but we found balance. We searched out creative solutions and found summer schools where he could spend half the day in a YMCA camp with extra support, signed him up for adaptive sports teams, put a swimming pool in our backyard and played outdoors as a family.  From age 12 through 16, he even flew solo, cross country, each summer  to spend a week in summer camp with other kids who shared his lot in life. His childhood was as normal as it could be without sacrificing his potential. The goal was to give him every opportunity to have a fulfilled and autonomous adulthood in which he could provide for himself (and a family down the road). And now here we are, in yet another of those big moments which lead to small victories.

Tonight is the first night that this almost 21 year old man will sleep in a rented room and practice his
self-sufficiency. We did right by him. He may not have had the same experience as other boys along the way, but the other boys were not on the same playing field he was on. His life was fraught with extra challenges and he overcame them. We watched for changes and we waited for symptoms, but we didn't stop fighting while we did it; we fought harder. We surrounded our son with a community of people who understand him so that he would never feel alone or different and we found ourselves a family.

My tears of uncertainty as he rounded the bend earlier today are not for lack of confidence that he will do well. I've seen what he can do. My fears and my ambivalence are grounded in how the world will treat him without my watchful eye to protect him. I'm just going to have to trust that we did all we needed to do to equip him to fend for himself. I will put my faith in his ability to figure out whatever we missed and to know that he has our support and love every step of the way.

Things You Might Be Surprised to Know About Me – The Activist Mom

It is that time of year again, Walk season. Every year, just as the summer winds down, days start getting a little shorter, nights get cooler and everyone else is buying new shoes, pencils and backpacks to go back to school, I enter Walk-mode.

Walk-mode has varied for me over the years. I’ve evolved from the passionate, yet sometimes irrational lady that people would cross the street to avoid because I was likely to assault them with a contribution shakedown. In those days, I was pounding the pavement night and day searching out raffle prizes, sponsorships, volunteers to man the food table, food donations, media contacts, and anyone in the business of entertaining children with balloons, face paint or crafts.  I was a walk organizer. In those days, I was also a pursuer of funds, although my focus on this was less intense. Without which, my walk would be a fantastic community building event, also very important in and of itself, but it would not be responsible for putting a drug in a clinical trial or for funding a grant to provide much-needed research.

These days, due to other charitable responsibilities that I’ve assumed over time, I am mostly the former-the pursuer. This often puts me in the awkward position of feeling unpopular and obtrusive.

If you have met me, or someone else like me; the person you’ve exclaimed to be a Super Mom, a go-getter, someone of extraordinary strength and abilities…You may be surprised to know these things about me:

1.    I’m shy at heart. I was born a shy person. I was the quiet kid in school who often didn’t raise her hand or want to be noticed.  Focused attention was painful for me. This all changed when my child was diagnosed. It didn’t happen in a flash of profound awareness. It happened gradually. As my child had more struggles to face, more obstacles to overcome, I became more vocal.  Little by little, I emerged as the person you see doing television news interviews, visiting my Senator’s offices on the Hill or standing on a podium addressing a crowd of people, all the while praying that someone will hear the terror in my voice, will know the sincerity of my message. I may make it look easy, but it is still grueling.

2.    Asking you to give your hard earned money to my cause is agonizing. I know how you labor for your money. I know how tight a family budget can be (insurance helps, but it doesn’t cover a lot of our son’s medical needs). I know you have other requests, from other equally loved friends and family members, whose causes are also important.  Please know that when I ask, I don’t do so lightly. It takes a sizeable amount of humility and a healthy dose of desperation to send you that email or tag your name in a social media post.  I hate doing it.

3.    Asking for your time is even worse. We are all busy. Time is a precious commodity. I worked and raised kids, I know. Requesting that you put aside your own family, your obligations and your billable hours, gives me hives. If I ask you to join our walk team, sign up for an event in your area, or volunteer at one…I will be chugging Benadryl- no joke.

4.    I’m not as calm, composed and pulled together as you may think I am. I am really just a mess with decent organizational skills that I was forced to adopt.  My knees shake when I have to speak in front of people. I practice my spiel in front of the mirror before a big meeting. I am usually juggling priorities and trying to catch my breath just like everyone else, and I get really stressed out, but I work painstakingly at making it look easy so that I can convey my message with confidence.

5.    I would change it all in a heartbeat. Usually, the author of a column such as this would say that despite the hardships, heartache, and strife, she wouldn’t change a thing. I am trying to be exceptionally honest here and I am telling you that I would change everything if given the chance to take this diagnosis out of the equation and give my child a level playing field in life. That isn’t something that is easy for me to admit. You probably think that my cause is my identity and who would I be without it? Honestly, I don’t know who I would be because that wasn’t my journey in this life. Maybe I would still be the shy, disorganized hive-free girl of my youth, maybe not.

It also means that I would not have met the incredible and inspirational people I’ve come to know along this path. These are the people who I now consider as beloved as my own family.  We understand one another better than anyone else in our lives does, including our own parents. We have supported one another in good news and have held hands and wiped each other’s tears with the bad. They are the people who will understand these words more impactfully than anyone else will. Yet, even though changing everything would include eliminating these precious relationships from my life, I would do that. Because doing so would impact my son’s ability to play sports, ride a bicycle, go on dates, be invited to parties, kiss a girl, hang out with friends in the casual way that other teens take for granted, not have a roster of specialists, need regular MRIs, an IEP, medication and the need for me, his Mom, to step far outside that zone of comfort on a regular basis to be the person who feels a need, while in Walk-mode, to make disclosures like this one.

I hope that knowing these things about me makes it a little easier for you to tolerate my seemingly endless capacity for badgering. With any luck, you won’t immediately skim over my social media pleas, won’t cross the street when you see me coming or avoid my emails and calls. Instead, maybe you will respond. Maybe you will be honest with me too and just tell me that it’s not a good time, that you appreciate my discomfort, would like to help me with my cause, but that you aren’t able. Or maybe now you will understand that even making a small donation will speak volumes and will make it all worthwhile for me. That when you respond and you don’t avoid and when you show even an inkling of support, I can get up tomorrow morning, smile at my son and put my big girl panties back on to face another day outside of my comfort zone.

Gearing Up for Daytona & Racing4Research: Why we volunteer.

The Children’s Tumor Foundation (CTF) Racing4Research (R4R) program will return with Park Place Motorsports in full flying colors this season as the team’s No. 73 Park Place Motorsports Porsche GT America will display a bright and vibrant paint scheme inspired by a signature piece of work from highly-acclaimed young artist and NF Hero Jeffrey Owen Hanson.

Each year, for the past four, our family has participated in the Children's Tumor Foundation's Racing4Research national program. What that means is that we register Jesse as an NF hero on the website and set up a personal donation page.  Then we put our creative thinking caps on and find ways to raise money for research. Every donation made and dollar earned, from the fundraisers that we organize, contributes to helping us meet our annual goals.  We work hard at this, all year long, knowing that what we raise will have a significant impact on our son's future. It also means that we get to celebrate our successes, along with our NF family of warriors, at the program's culmination event: The Rolex 24 at Daytona.

Fundraising for a cure is a passion. When your child's future hangs in the balance, it is only natural to seek out the mechanism by which you can put the odds in his favor. Children's Tumor Foundation is that vehicle and with a 4-star rating on Charity Navigator, the highest possible rating, I know that we are working with the foundation that will find the cure.

I connected with Children's Tumor Foundation in 1997, when it was still called National Neurofibromatosis Foundation (NNFF). The neurologist who diagnosed my then, 6 month old, baby boy gave me the sage advice of refraining from searching NF on the internet.  He told me that I would be horrified by what I would find and that if I wanted reading materials, he would provide them.  Of course, I did not want to be horrified by anything in relation to my infant son. I was still post natal and breast feeding (ie. hormonally emotional; a sleep deprived mess) and reeling from the diagnosis itself.  He mailed us a very large packet of materials, which I tucked in a drawer and did not even unseal for at least 6 more months.  I wanted to enjoy my baby and give him my best self, not a stressed-out-what-if-filled version of me.  It wasn't until Jesse was consistently delayed in meeting his milestones: sleeping, sitting, crawling, walking and talking, that I tentatively opened the package.  

It was in this package that I found a brochure from NNFF. That was when I finally went to the computer. I poured over the website (I can still picture it perfectly in my mind) and eventually found the bulletin board where I was able to compare notes, read stories and ask questions of other NF parents, because at this point, I had never met one face to face.  Over the years, there were times when it was a comfort to be connected and informed and there were times when it overwhelmed me and I kept my distance.  I tended to gravitate back there whenever something new would come up.  I had already had two other, healthy children, so I knew what was "normal" and what was not, for the most part.  Anytime I needed to check something out, I went to the NNFF-BB.  This was my first experience with making NF family connections.  At the time, there were no organized events in our area (Western New York), but I often thought about finding ways to participate.

When Jesse was 2, I held my first fundraiser; a virtual tea party, with all of the proceeds going to the foundation.  Whenever a family celebration came up, we would ask for donations in lieu of gifts. In the meantime, we continued to raise our son; focusing on the educational and developmental aspects of his disorder, which just happened to be his Daddy's area of expertise (Peter is a board certified neuropsychologist). When Jesse was 7 years old, a plexiform tumor began to grow in his right ankle and he was having recurring headaches and blurred vision.  He had never had an MRI up to this point and we began to have concerns about where other tumors might be growing in his small body.  We researched NF clinics that would be closest to us (Rochester had a major medical center, but no NF specialists at this point) and decided on the Cleveland Clinic in Ohio; a five hour car ride in good weather. It was at the Cleveland Clinic that we met the very first of our NF family live and in person.  Her name was Sarah and she had been through so much more than Jesse had in her 4 years of life. She had a prosthetic eye, had been through chemo treatments and many other horrors.  It has a way of putting things into perspective. 

That being said, the first MRI was ordered, tumors were found and still we were devastated. Our little boy had thickening of the left optic nerve and chasm and small tumors all down his spine in addition to the plexiform tumor in his ankle. This meant that he would need regular follow-up MRIs, which required sedation because they lasted from 4-6 hours each (head, spine, leg with and without contrast). Following each MRI, he spent several hours vomiting and thrashing. He had to go through this again after 3 months, then twice a year for two years.  To date, the MRIs have been mostly stable and the tumors have not required treatment. We are very grateful for that. Once the MRIs slowed down, it was determined that the leg with the tumor was growing progressively faster than the other one and the xrays and surgical consults started up!

Putting a young child through procedures like these, in addition to having him sit in a car 5 hours each way just to see his neurologist in another city, require the regular services of  a neuro-ophthalmologist, orthopedic specialist, neuropsychologist and endocrinoligist (as well as many other specialists who ruled things out on a one time basis),  all while watching his daily struggles with learning, PT, OT, SLT, socialization and anxiety, has a way of fueling a person's fire to help the researchers get the money they need to find a cure. [catches breath] As the new Children's Tumor Foundation President, Annette Bakker says, "It puts fire in your belly."

Our first Rochester NF Walk in 2011

To date, I have organized three walks in Rochester, NY, after beginning a chapter there, which have raised close to $70,000. Our family has held a Bowling4Research event, a Charity Garage Sale and held raffles.  A Dining4Research event was organized by Jesse's Auntie Danielle in Florida and many friends and family have donated on Jesse's behalf.  We have participated in/or have been represented at events in New York, Florida, Washington state and Virginia and have attended NF Family Forum in four cities.  

NF Family Forum 2012~New Orleans (Jesse was a speaker at this dinner of over 500 ppl)

Peter and I will volunteer at the Cupid's Undie Run in DC next month-our first! We have also done several news stories on television and in the papers in our attempts to educate others.  You can see some of them on Youtube. 

I don't know the exact figure of how much money we have raised, but I do know that every dollar counts. With our move to Virginia this year, our fundraising did not really get off the ground as we had hoped, but we are planning a motorcycle ride event (Riding4Research) for the Spring and  will do whatever else comes our way.  We have the fire in our bellies and we won't stop doing whatever we can do to raise awareness (including getting tattoos) and funds so that our son can hope for a better future. We stay dedicated to this path because, in the words of Michelle Lampman, mother to Ryan, also with NF1, and my successor in Western NY:

"He will have it [NF] forever. We will be battling tumors forever."

In ten days, we will drive to Daytona, FL to meet up with two Grandpas, a Nana and many of our NF family members to participate in the Racing4Research 2014 culminating event: The Rolex 24 at Daytona.  This year, we will be paying our own way, but even though he recently claimed that it's not true (to try to alleviate the financial pressure on us to go), this is Jesse's favorite event of all.  I won't lie, it's Peter's and my favorite as well!  At this event, we will rub elbows with the driving team of the No. 73 (Park Place Motors and Children's Tumor Foundation) Porsche GT. Jesse, along with all of the other NF heroes, will sign the car and take photos with the team and then we will cheer them on as they race through the night to bring us our first podium finish! My next blog entry will share our experience with you.

After the Rochester NF Walk 2013, I posted something on Facebook that I think does a good job of summing up our motivation for being involved in Children's Tumor Foundation and Racing4Research. It is worth repeating:

Connie Brisson Sorman

October 1, 2013

Whenever I have opportunities to bring people within the NF community together, I always get a feeling of accomplishment. I am happy knowing that my son is growing up knowing that his burden is not his alone and that he has a whole community of amazing people around him who share his struggles. — feeling blessed.

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Short of Breath

com·mu·ni·ty

kəˈmyo͞onitē/

noun

1. 1.

   a group of people living in the same place or having a particular characteristic in common.

   "Rhode Island's Japanese community"

   synonyms:

   group, body, set, circle, clique, faction; More
2. 2.

   a feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals.

   "the sense of community that organized religion can provide"

   
   

This is the follow up to my Facebook post last night. As I learned of the demise of another, very young NF warrior and read the pleas for prayer from the mother of a young woman, who will likely not last the week, I felt short of breath.  Because I couldn't think of anything uplifting to share with my beloved NF support system, the community I have depended on for so many different levels of support, I simply stated: 

"Feeling sick and sad. Too many young people being taken before their time. A cure needs to be found. I want to feel fueled to the cause, but I can only feel short of breath at the moment."

There were a variety of responses to my post, but I will address those later. I wrote what I did, shared how I was feeling, because I needed to be honest. I felt deflated and panicked and angry and sad. I did not feel inspired. I did not want to run out and find a way to raise more money or more awareness. All I wanted to do was crawl under my covers and cry.  

I found myself on the internet searching MPNST and recalling the two new plexiforms on my son's body (although I know he was born with them, they did not appear until more recently than the first one); driving myself frantic with worry that it would happen to him too.  I emailed a friend, a very courageous woman I have come to know through my community of heroes, to ask her for the details of her teen-aged son's MPNST survival.  Early detection. Even the mother of the withering young girl was posting desperate advice:

"Don't be fooled like us into thinking your safe just get checked often at least yearly if not more especially if you have plexiforms. 
She started showing signs at school in Feb. She had just had a surgery so we thought they were fallout from that. We went to drs in July. Sent to oncologist in aug who told us it wasn't cancer. 3 weeks later in hospital emergency because she couldn't feel her groin area. Mri saw softball tumor eating through her sacrum into tailbone. We found out after 3 weeks of tests and drs that it was inoperable so we tried chemo pill votrient and radiation. Nothing helped only speed it. She hasn't gotten out of bed now for almost 2 months even with a pain pump implanted and morphine and neurontin etc. She hasn't gotten a break since and everything that can go wrong has. From diagnosis is been 2 1/2 months."

I would be foolish not to be panicked, right? If it could happen to their children, why not mine? Why should I think I am more fortunate than they are? The truth is that these feelings have been building since Jesse entered adolescence and his hormones started their rage.  I've been warned all of his life that this is the period of tumor growth and changes. The specialists all have the same approach. If there are no symptoms, such as cognitive changes, rapid growth, pain, falling down, bumping into things…then we watch and we wait. I get that. I don't want to unnecessarily subject my son to additional testing and scans, but once there are symptoms, when the tumors are differentiated, isn't that sometimes too late???

I am not, by nature, a worrier.  I'm usually pretty evenly keeled. My advice to others has always been, " Do not lose sleep over things that haven't yet happened, and may never happen."  That's good advice. So why was I losing it?  My breath was caught in my chest and my heart was heavy.  

Being very involved with the NF community gives me the opportunity to be supportive to others and receive their support in return. Yet, being so attuned also exposes me to the horrors of this monstrous disorder.  When Jesse was very young, in the days of the NNFF bulletin board as a way of sharing within the community, I waxed and waned in my participation. If he was stable and I felt secure, I stayed away. If something new came up and I felt anxious, I engaged. This could lead to additional anxiety or it could offer comfort, depending on the severity of the symptoms.  In those days, I was not a very active volunteer and I didn't know many others on a personal level who were affected by NF.  The fundraising and awareness I initiated was with family and friends.  I could be involved as much or as little as I wanted to be. 

Over the past 8 years, with the onset of more of the physical manifestations, I have gradually taken on a greater roll in order to feel more empowered over this beast. In general, being active has served me well. It has given me more of a sense of control over the thing of which I actually have no control at all.  Last night, that fact hit me square in the face.

I am still reeling from the untimely death of dear, sweet Gavi.  At 22 years old, Gavi and his parents attended the first NF Walk that I organized in Rochester, NY. Although I had met his parents a few times, this was my first time meeting Gavi. He was a bit older, but he was so much like Jesse. Mutual friends of ours who had known his family since he was very young, often remarked about how similar they were in appearance and in demeanor.  He had a beaming smile that drew you in and encouraged you to approach him, yet when you did, he was somewhat apprehensive if he didn't know you well. Once  you engaged him in conversation, he was charming and delightful.  Gavi was the kind of person that everyone liked.  There was nothing abrasive or offensive about him.   I remember him buying raffle tickets by the armful. He said that many of his friends had given him money to buy the tickets for them even though they couldn't attend the walk. He kept winning and winning and his smile beamed bigger and brighter. 

Jeff, Lyn and Gavi at the 1st Annual NF Walk Rochester, NY

Also attending the walk, was the new NF specialist in town. Dr. Mulbury was making her debut in the greater NF community that day and introducing the presence of a budding clinic that was so badly needed in the area.  Gavi's family chatted with Dr. Mulbury and she encouraged them to come in since Gavi had been symptom free for many years and had not been examined by an NF doctor in that time. During that exam, it was decided that they would conduct a baseline MRI just to keep on file…

It wasn't until after his resection surgery that I learned that the MRI revealed a brainstem tumor and that the tumor was growing over the 9 months that they monitored it.  They attended a bowling event that I held in January (just prior to the decision to excise) and they didn't mention it.  They were pretty private people. We were collecting items for a teen in our chapter who was going through treatment for his NF related Cancer and they donated.  By the second walk, they emailed me to explain why they were unable to participate in the walk's organization.  He had had surgery at this point and was rehabbing in a nursing home. They could never get ahead of that tumor. He passed away just 3 weeks before the third annual walk. He was 24 years old and their only child.

Last night, when the young man passed and the mother of the young lady was pleading for prayers, Gavi's parents' faces were emblazoned on my heart.  I couldn't even attend his funeral because I had just moved to Virginia. They showed up unexpectedly at the NF Walk on September 29th of this year (3rd Annual) and a team was raised in his memory. 

It was more than I could bear, so I chose to let the burden that I felt so heavily last night, show in my Facebook post.  I purposely abandoned hope for an evening so that I could feel the full force of my pain.  I rarely ever do that, especially not in public.

Team Gavi's Angels, that pulled together at the last minute, in memory of Gavi. His parents are in the center.

Going back to the comments that were left on that post; they ran the gamut.  As expected, those within the community commiserated, some of my friends outside of the community offered their prayers and well wishes, others encouraged me to stay the course and continue on in my efforts to do good for the cause.  The one theme that stood out, however, above all else, was the validation of the intense need that we all have for each other's company in times of grief, in times of fear and in those times that we get to rejoice about one simple word: stable.


Six months more of hope

Thankful for prayers answered

Able to breath once more

Bearing good news

Lifted spirits

Enjoying the moment