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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Me Too

I have a confession and some apologies to make.  I confess to feeling more sympathetic to my disabled son's needs, than to my other children's. I know that the reason I have felt this way is because he was given this unjust life sentence of having a progressive tumor disorder.  He has had to endure endless specialist visits and procedures, has struggled with learning, has an uncertain future; so this seems perfectly natural, doesn't it?  

In retrospect, I have this horrible feeling of guilt (any mother's plague) for behaving this way.  I keep seeing my youngest daughter's crumpled face, eyes wide, sometime around the age of three, as she pleaded with me: "Me too."

It was a normal cold winter's day in our home. The older kids were at school and I was getting the younger two ready for their respective preschools.  Although she is younger than her brother, I left my daughter to struggle into her snow pants, boots, hat, scarf, mittens and coat by herself.  Meanwhile, I attended to my son, who could not even manage his own coat, never mind attempt snow pants and boots!  I got him zipped, tucked, bundled, and.. screaming because he couldn't bear to be so confined by clothing. I didn't even notice his sister fumbling with her mittens as I hurried them out the door to get him distracted by a video in the car.  She held the mitten up to me and assaulted me with her request, "Me too."  In my frazzled state, I was even irritated by her incompetance!

What kind of unrealistic expectations have you placed on your unaffected children?

Here is my list of transgressions:

1. "You should be more patient with him because it's not his fault."

Why is this unrealistic? First of all, ALL brothers and sisters annoy each other. How am I preparing my children, all of them, for the real world if I try to protect them from each other? 

In the end, their family is going to be their safety net. If they aren't permitted to feel natural feelings of annoyance and disappointment in one another, they won't learn how to test that net.  My hope would be that they would learn to cope with those feelings within the safety of their own family and take that knowledge with them into life.   

Maybe, just maybe, it will teach my unaffected children how to evaluate each person they meet with a broader perspective and it could teach my affected child how to let comments and gestures from others roll off his back with a little more ease.

   2. "You need to figure it out on your own."

How many times have I expected my other children to tie their own shoes, attempt their own homework, find their own rides, solve their own problems, because I was "busy" with their brother?  Too many times to count. 

Although I do feel some guilt about this, I don't think this was entirely a bad thing.  I think that often times, we are too quick to solve our children's problems for them. We don't want to see them struggle. I don't know where or when we decided to be this way, it was definitely not from our parents! I don't remember a time that I asked my parents for help with homework. Seemingly, our parents' generation knew that kids needed to struggle in order to develop their brains for critical thinking and to empower them with problem-solving skills.  There are whole articles written on this topic.

I do regret not having more patience with them. I was so often overwhelmed by my son's needs that I often felt irritated when my other kids asked me for help. 

  3.  "I expect more from you."

I saved this one for last because it is the sum and substance of it all. I may have never actually uttered these words to my children, yet there is no doubt in my mind that they know this.

 This one is not as much of a regret for them as it is for my son. By expecting more from his siblings, I have actually expected less from him, haven't I?  I have always encouraged him to work hard and be his best, yet, I fear for him more often than I do the other kids. I fear that he won't be ready for college when his peers are. I fear that he will not find a job situation that will show him compassion. I fear that the world will be cruel and unkind. I fear he will be alone, in pain, unhappy...I could fill this page with my fears.

Of course, I have the same kinds of fears for all of my children, but the feelings are so much more intense when your child is born at a disadvantage.  I know in my heart, that the others are going to be just fine even though they have all had their own struggles in life. I don't have the same confidence for him.  This is the most troubling aspect of all.

Now for my apologies:

To my Biggest Kids, 

I expected the most from you. You were so much older and in my mind, less needy. I know now that this was not the case. You were just as needy, but your needs were different. I am sorry that I may have made you feel insignificant at times. I am sorry that I made you grow up faster than you should have. I am sorry that I expected you to know certain things, to be more compassionate and to have an understanding beyond your years. Just as your brother didn't ask to have NF, you didn't ask to have a brother with special needs.  I love you with every ounce of my being and wish for every happiness in your life.  You are strong, you are capable and you are amazing. You are not inconsequential in any way.  There are some very important life lessons that you learned by being his sibling.  I don't wish to discount that, but you may, at times, have felt less important to me and for that I apologize.  I never wanted you to feel that way.

 To the Baby,

You may have been born last, but you were not often given the opportunity to be the baby.  Having a "bother," (which you quite aptly misspelled on one his birthday cards) who needed so much attention from me, was often unfair to you.  I have expected things from you that were far reaching for your age.  I've expected you to take care of him, to watch out for him, to include him and to have more patience than any sister ever could.  You have always risen to the occasion and have sacrificed much of your own identity to be a "good" sister.  You have traveled countless miles, sat in waiting rooms, entertained your brother during recovery periods and shown compassion beyond my expectations.  You have never complained about any of this and you have never expressed any wish to have it be different.  I am so sorry that I didn't have more patience when you needed me also. I am sorry if you ever felt left behind.  You are a special girl and you have such empathy within you; not many are given that gift. I just want you to know that I love you and respect your kindness more than I can ever express.  My hope is that you will never again in your life have to say, "Me too."

My confessions are made and my apologies have been expressed. Do I think that with hindsight, things would have been any different? Absolutely not. We are human beings. We do the best we can in any given situation. Having a child with NF can be very stressful on so many levels. We have to cut ourselves some slack because our expectations of ourselves are often the most unrealistic. We find ways to make all of our children feel valued and loved, but the truth is that circumstances determine who needs the most from us and our other kids find their way. They learn to be stronger and to have more compassion for others. They are better equipped in life than their peers.  Perhaps they need special times alone with us to compensate, but what I say to that is: "Me too." It's a win/win situation. 

Alli-Sunshine

 Two years ago, I noticed a teen-ager looking to make NF connections on Facebook. This conversation ensued:

• Conversation started November 7, 2011
• 

  11/7, 8:59pm
  

  Allison Sovie
  

  
  

  I I got your friend request is it ok if I talk to you before I accept your friend request I just get kinda nervous about this stuff ..
• 

  11/7, 9:23pm
  

  Connie Brisson Sorman
  

  
  

  Absolutely. I saw you were asking for other pages with discussions about NF. I'm the president of the Western NY chapter of CTF and I am always involved in discussions about NF. I have a 14 year old son with NF1-Jesse.
• 

  11/7, 9:29pm
  

  Allison Sovie
  

  
  

  Alright thank you ! I am 14 years old freshman in high school my doctors don't know what type of nf I have and I am the only one in my family with nf ... .. I'm not really involved with nf stuff but I want to be !!!! Not many people know about it where I live .. I want to teach people about nf
• 

  11/7, 9:35pm
  

  Connie Brisson Sorman
  

  
  

  Well perhaps you can join in one of our chapter activities and get to know some others with NF.
• 

  11/7, 9:47pm
  

  Allison Sovie
  

  
  

  I would love to join in on that stuff !

  
  

  
  

 I didn't hear from Allison again for an entire year, but when I did, a connection was made that bound us together for all time.

As NF advocates and Children's Tumor Foundation volunteers, we are often the first NF affected person with which a new family has contact.  We have this awesome responsibility of giving each one a memorable first impression.  Whether we foster that friendship ourselves or make a connection to another individual with similar circumstances, we are in the business of building relationships.  Sometimes these relationships are brief and sometimes they are lasting, like the one I have with Allison.

As a 14 year old, Allison Sovie became curious about meeting other people with NF. Being from a small town near Binghamton, NY, she didn’t have much knowledge about her diagnosis and had never met another person with the disorder. On November 7, 2011, she posted on Facebook looking for information. I requested her as a friend and, because she is a wise and responsible girl and I was a stranger at that point, she asked me a few questions before accepting my request.  We had a brief, online conversation, and then I didn’t hear from her again for almost a year.

On October 30, 2012, she emailed me through Facebook for advice about her symptoms, her friendships, and how to incorporate NF into her everyday life. She felt ashamed and isolated with her diagnosis and wanted to make changes. It took a lot of courage for her to make contact and begin the process.

We quickly struck up a friendship and graduated from Facebook messaging to texting, and eventually she gathered the courage to FaceTime with me, my son Jesse (who has NF), and my daughter Alexa. That was the first time that she ever spoke to another person with neurofibromatosis.

After weeks of complaining about persistent headaches and clumsiness, I told her about the NF Clinic in Rochester and her mom made an appointment. Luckily, they moved quickly because Dr. Mulbury didn’t agree with Allison's previous neurologist’s opinion that the tumor on her cerebellum was stable. She immediately ordered an MRI and set up a consultation with the neurosurgeon at the Clinic. It was decided that Allison needed to have the tumor removed.

The first time we met face-to-face was in the waiting room of the URMC NF Clinic.  My initial thought was about how tiny and fragile she seemed. Although we had been communicating for months by now, she was very quiet and shy. Granted, she had a lot of information to process that day: brain surgery, tumor growth, a new NF doctor, and meeting me for the first time, yet even with all of that on her mind, all she wanted from me was a hug. I was happy to oblige. 

Allison and I at the NF Forum Nashville, TN Walk 2013

Before the surgery, Allison and her mom, Tracy, were lucky enough to attend CTF's 2013 NF Forum in Nashville through a grant from the 

NF R.A.C.E.R.S., an organization formulated to grant assistance to NF families living in New York who are in need.  At the Forum, both Allison and Tracy were able to connect with many other families and individuals with NF and make new friends.

Allison’s surgery and recovery took place over this past summer. She is doing well and will continue to be monitored with regular MRIs.

Just a year ago, I didn’t even know Alli-Sunny, as I refer to her. Now, because she was brave and curious and overcame her fears of learning more about NF, she and I are inseparable. I care for Allison as if she were family. She is kind and sweet and smart and funny. I am so happy that Allison reached out to me and to others in the NF community. Now she can walk with her head held high and feel no shame about her diagnosis. She is a true NF Hero.

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