Carly S. - Quilt Finished in 2008
Born: September 16, 2004
Illness: Chemo for Optic Gliomas (brain tumors), Neurofibromatosis (NF) Type 1
A Thank You From Carly's Family!
January 15, 2009
To the entire staff at Love Quilts, and all volunteers:
This letter is long overdue, I know, and I apologize profusely for that. My daughter Carly received her Love Quilt in June 2008 and, ashamedly, it has taken me entirely too long to compose and mail this letter.
I want to let everyone at Love Quilts know how special Carly's quilt is to her. As her mother, I feel blessed that Carly has been able to participate in this truly unique experience. I am honored that there are special people in this world who put their money, time and energy into a beautiful gift for these special children. It restores my faith in humanity. I look at each and every square on that quilt and think about the people from all over the world who were thinking of my child when they made that square. It is truly humbling.
This quilt is just as special to Carly. First of all, it is the only blanket that is allowed on her bed...and no one else is allowed to use it, touch it, or sit on it. And it's not that we've ever tried, but she gave us our warnings just the same. When Carly received her Love Quilt, we sat down and looked at every single square and talked about the picture and then talked about where it was stitched and by whom. It is still something she asks me to do over and over again...and of course, I enjoy doing it.
In the future, Carly will have a deeper understanding of what it means to receive a gift like this and I know she will cherish it forever. Mere words cannot express my deep and heartfelt gratitude for this remarkable gift...but thank you!
Kelley (Carly's mom)
Carly's Story
Written by Carly's mom in July 2007
My husband Adam and I welcomed Carly into the world on September 16th, 2004. We were all thrilled, including her big brother Brandon and her big sister Holly.
Carly was born with a large “birthmark” on her left shoulder and upper arm. At first we didn't realize what it was; the skin was not discolored at that time, it was just a little hairy. Considering that Holly was as hairy as a monkey when she was born, I didn't think anything of Carly's patch of hair. By the time Carly was two months old though, the skin color had changed and we knew it was something more than just a patch of hair. Also, other smaller "spots" began to develop all over Carly's body. I began noticing a spot or two when Carly was just three weeks old and the number of spots continued to increase. When she was four months old, our doctor diagnosed the large birthmark as a congenital hairy nevus. A nevus can be potentially cancerous so we knew that at some point it would have to be removed. We were told that no doctor would touch it until she was at least four years old. That just didn't sit well with me. My thought was, the younger the better...she wouldn't remember it, recovery from surgery would be easier, less scarring, and so on.
As for the spots, well I think I was the only one that was convinced that those must be a sign of something more. Everyone dismissed them as just more birthmarks but that didn't make sense to me...after all, who has that many birthmarks? So I continued to do my own research and discovered that these spots are classified as "cafe-au-lait" spots and that more than a handful can be indicative of a disorder called NEUROFIBROMATOSIS. I first read about this when Carly was just four months old. At the time, I only read that it can cause learning disabilities in 50% of the cases, and that alone made me heartsick, and scared out of my mind.
In early May 2005, we met with Dr. Waner in New York City. He has performed more than 4,000 birthmark surgeries and is considered, in his field, to be the best in the world. He has been featured in specials on The Discovery Health Channel and The Learning Channel. He was also featured on CBS’s "Early Show" and has been on the cover of U.S. News and World Report. The only drawback was the travel to New York City. However, Dr. Waner had just recently moved up from Arkansas so I guess New York City wasn’t so bad. The best part was that Dr. Waner agreed with us; the earlier it is removed, the better. He felt that children heal better at this age and that there would be less scarring. Dr. Waner was very concerned about the cafe-au-lait spots though and seemed quite surprised when I told him that Carly had not been tested for Neurofibromatosis. At that point, it became real to me and it hit me like a ton of bricks. I remember feeling as though I may pass out as Dr. Waner told me to get her back to Philadelphia and get her to a geneticist right away.
Neurofibromatosis (NF) is a genetic disorder that causes tumors to grow along various types of nerves. It can also affect the development of bones and skin. NF causes tumors to grow anywhere on or in the body. It also leads to developmental abnormalities including learning disabilities (which occurs in 50% of cases). Type 1 (NF1) occurs in one in every 4,000 births. Some of the characteristics of NF are: multiple cafe-au-lait spots, neurofibromas (tumors) on or under the skin, and freckling under the arms. Deformation of bones and scoliosis may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. Most tumors are benign, but there is incidence of cancer. NF may be inherited from a parent who has NF or may be the result of a new or spontaneous gene mutation, each occurring at a rate of 50%. Each child of a parent with NF has a 50% chance of inheriting the gene and developing NF. Approximately 100,000 Americans have NF. Cases range from very mild to quite severe...but there is no cure for NF.
So on May 18, 2005, we saw a geneticist at Children's Hospital and at that time we were told that Carly "most-likely" has NF1. At that point Carly had 20 to 30 café-au-lait spots so the doctors felt that so many, at such a young age, is overwhelming evidence...too many to not be NF. Adam and I were also examined by the doctors and since we do not have any spots or freckling, the doctors determined that Carly's condition must be due to a spontaneous gene mutation, not heredity. A DNA test was done to confirm the diagnosis and we waited six weeks for results. We got the call on June 29, 2005...Carly tested positive for NF1.
Within a month of that initial diagnosis came another. After an initial MRI, we learned that Carly also has two brain tumors called optic gliomas. This news was devastating! Further MRI’s showed a slow and steady progression and we feared that one day Carly would need to undergo chemotherapy to treat these tumors.
In April 2006, Carly was diagnosed with yet another tumor in her neck, chest and arm. The so-called birthmark, or congenital hairy nevus, that we discovered shortly after her birth turned out to actually be a tumor called a plexiform neurofibroma. This large and extensive tumor impairs proper function and causes pain for Carly. These types of tumors can cause disfigurement and can become malignant, so it is closely monitored. Surgical removal is last-resort option, as it would mean that she would completely lose function of her arm. This type of tumor is complicated, unpredictable and virtually untreatable.
In February 2007 a routine MRI revealed that Carly’s brain tumors have yet again progressed, this time requiring treatment. In March Carly began a yearlong protocol of chemotherapy at Children’s Hospital of Philadelphia to treat these brain tumors. Left untreated, these tumors could result in her loss of sight, and cause other complications as well. Chemotherapy got off to quite a rocky start. Carly suffered from nausea and constant fevers and even required several hospital stays, and within six weeks she was completely bald. She also lost a significant amount of weight and had to have a feeding tube placed.
Carly also participates in Early Intervention seeing a speech therapist for weekly sessions and an occupational therapist for bi-weekly sessions.
Carly has had to undergo five operations, many MRI’s, and countless doctors appointments and hospital visits as a result of her condition. Her future in uncertain, as this is a disorder with complications that are variable and unpredictable. My hope is that she will be able to grow up laughing, playing, and dancing but unfortunately hospital visits, doctors’ appointments, MRI’s and chemotherapy often overshadow that.
