Cure NF for Kaitlyn: 2011

Tuesday, November 8, 2011

Thank you to everyone who joined us this past weekend for the second annual Great Steps for NF Walk at Shelby Farms. Team Kaitlyn was the highest fundraiser and the largest team. We have an AMAZING support team...both those who joined us in person and those who joined us with donations. We couldn't have done it without ALL of you. We had family from Kansas, Texas, Tennessee and Canada; friends from childhood, school, and work; Kaitlyn's doctors from Neuropsychology and Genetics; and resource teacher from school. It was a fabulous turnout for TEAM KAITLYN! We even made new NF friends. The love and support we receive from all of you...are what get us from day to day. Thank you with all our hearts for being apart of TEAM KAITLYN!

Sunday, October 23, 2011

Well we just got home from the most amazing day of our lives. Krop for Kaitlyn was a huge hit. Kaitlyn and Kirsten had a great time meeting all the special people that attended Krop for Kaitlyn. I will never be able to thank everyone enough for the love and support we received this evening. Our lives are soooo blessed! LIFE ALTERING is the best discription to explain my feelings right now. Thank You to everyone!

Sunday, August 28, 2011

NF spots

There are so many people that may have Neurofibromatosis and not even know it. This blog entry is to show you what to look for. Every NF patient is different and will have different symptoms and marks. This information is based on what we have learned from our family's particular symptoms and spots. Cafe-au-lait spots seem to be "birth marks" at first. However if you have more than 5 marks over the size of apox. 1\2 inch in size, you could have NF. Freckling of the arm-pit is extremely common in NF. Freckles are usually brought out by the sun. Freckles in places that the sun doesn't usually hit, like between legs and arm-pits could be a sign of NF. Fibromas are little bumps on skin that are raised. Sometimes there are little hairs coming out of them. Fibromas are sometimes filled with histamine, which may cause itching. Hair growing on the lower back is common as well. I am hoping this information helps our extended family members to be aware of signs of neurofibromatosis.

Friends and followers should be aware of signs as well. NF is more common than you think. Someone in your life is fighting NF, whether they know it or not.

Thursday, August 4, 2011

Memphis NF Walk November 5, 2011

It's time to start the fundraising for the Second Annual Great Steps for NF Walk at Shelby Farms, Memphis, Tn. Come join the fun! Support Team Kaitlyn by signing up to walk with us http://www.planetreg.com/E72010203293. or by donation visit www.firstgiving.com/fundraiser/teamkaitlyn/teamkaitlyngreatstepsfornf-tn.
We hope to see your there! Research means a lot to Kaitlyn's family. Kaitlyn's mother and sister have a rare altered NF gene. Research is NF's only hope for a cure for all those fighting Neurofibromatosis....one step at a time!

Thursday, May 12, 2011

Kaitlyn doesn't want to share NF with Sister

A few weeks ago I noticed odd spots on Kaitlyn's sister Kirsten. They look like dirt at first, but they do not come off. Her spots are located behind her ears, and are only seen when her hair is pulled back. I contacted Kaitlyn's genetic specialist, and they got us in as soon as possible. Kirsten has never been sick or had any problems so this was new to her...therefore she was very nervous. The doctor ordered bloodwork that came back saying her NF marker in the gene is "altered". This is so rare that the lab is actually paying for additional testing on Kirsten and Kaitlyn in addition to tests on the girl's father and myself. Basically, to have NF the chromosome is either missing or mutated to where the gene isn't working properly. With "altered", it is still working. We just do not know if there is damage to the gene that could cause problems or not. This type of case has only been documented twice, so they are doing research on our blood to figure out what will happen next. Kaitlyn doesn't want to share NF with sister because that is "what makes her special". We are in the works to explain that NF is so big that God needs us all to help spread the awareness, and that she is special because she's KAITLYN.

Sunday, March 20, 2011

Latest MRI and EEG updates

For the past few months Kaitlyn has been asking..."when can I go in the machine again?". She's talking about the MRI machine. Finally the day came. She had an EEG in the morning and MRI in the afternoon. She was so excited! Our first stop was at the EEG check in. We were quickly moved into a room where Kaitlyn got to lay in a bed and relax as she watched tv and had her hair done with special ribbons. The tech was awesome! Kaitlyn even feel asleep so they got a great test reading. The out come was normal, but have not confirmed that with Dr. Richie yet. This was being done to check for damage from siezures when she was a baby. We got checked in for the MRI and was ready to go. The radiologist on duty said it would be a better reading for NF if we did contast. Kaitlyn was not prepared for an IV. That was not something she was warned about, but being the little hero Kaitlyn is...she handled it like a big girl (ok...like an adult). The coordinator talked her through everything and even taught her how to put an IV into a stuffed monkey. We had a LONG wait for the new doctor's orders to come, so we watched a movie...ok TWO movies. When the time came to get into the machine, she was ready. She climbed right in (with the biggest smile) and didn't move a muscle for 40 minutes. She did wonderful! The results of the MRI came back saying that the 4 lesions inside her brain remained the same, but the one in the back of her head between her brain and her skull had grown a few centameters. Apparently it's like 1 1\2 in x 1\2. We were not thrilled with this, but if any of the lesions were to grow...that one is the safest. So we feel very lucky and greatful of the outcome. We thank everyone who is on our prayer team. We couldn't have gotten through without you.

Monday, January 17, 2011

Prayers for Aidan

The NF walk last October was one of the most amazing experiences of our lives. One of the highlights was meeting others fighting NF. The picture to the right showing the top fundraisers of the walk, has a young boy in it. This little boy is Aidan. The doctors have discovered that in addition to the lesion on his brain stem, he also has lesions on both optic nerves. This means there is a chance of him loosing his sight or worse. The lesions can not be removed, so St Jude is using chemo to fight the NF. We are asking for prayers for Aidan. Life with NF is hard enough. I can't imagine adding severe complications to it. This could one day be Kaitlyn, and I know we will need as much support and prayers possible to help us through that chapter of life. So we ask for your help with prayers for little Aidan. Prayers can be so strong from friends and loved ones, but image adding prayers from people who you have never met. A person that takes time to pray for a stranger has a pretty big and strong heart. So please take a moment to pray for Little Aidan and his family to have strength to get through this hard chapter of life.

Why this blog was created...

This blog was created so that Kaitlyn's family and friends can keep up with her doctors and other events in her life. It was also created for those parents that have questions and are still at the frightening stage of learning about NF. When you first hear about your child having NF, it is so scary....all of the questions and concerns that go through a parents head is overwelming. I'm hoping this blog helps people understand more about NF. I write it in simple terms because it makes it easier to understand and explain. All of those formal terms and high tech words start to sound like another language. So I have simpified it so that kids and parents can relate to what is going on. My number one mission is to spread the awareness of neurofibromatosis to those families that have it and don't know it. I can't imagine learning about this when "it's too late".

Medical history

Kaitlyn was diagnosed with NF1 at six months of age. She was a full-term pregnancy with little complications. At birth she was put into ICU for a few hours due to breathing difficulty. Immediately during her first days, Kaitlyn was very fussy. It became clear she was having bowel problems. She was taken to doctors and treated for stomach issues. She was then sent to a genetics specialist because of a café au lait spot on her stomach. More and more “Katy-bug” spots started to appear as she got older, along with freckling under arms, hair on her lower back, posture issues etc. It was quickly suspected that she had NF. A DNA blood test confirmed that she indeed had “deleted chromosome 17” neurofibromatosis type 1. We were told her life expectancy was 9 years and she wouldn’t be able to learn past the ranking of a few years old. A bone scan was done which revealed a lesion on the left side of her scull between her eye and ear. She then started getting MRIs done regularly. Each MRI showed more lesions. As of 2020, she has 5 lesions inside of brain, one outside her skull, one between skull and scalp, one in her hip, one on her lung, around her ribs and in her arms…that we know of. During the last couple of years, hundreds of neurofibromas have developed on the outside of her body causing difficulty and pain in joint areas. The lesions in her brain push on nerves and have caused uncontrolled emotions, difficulty understanding, memory problems, night terrors, seizures etc. Luckily, she appears to have outgrown her epilepsy. Her last seizure was May 2012. In April of 2015 she had a 6x9cm tumor removed from the back of her head between the scalp and the skull. It has since grown back but not as big as the original. The tumors in her arms cause pain while using hands. She also has an uncountable number of neurofibromas through the trunk of her body. These tumors cause debilitating pain. She is now a patient of an adult pain clinic in addition to ENT, eye specialist, neurosurgeon, neuropsychologist, and genetics specialist at University of Tennessee plus pediatrician and orthopedics doctors. She has recently discovered acupuncture is a big help to relieve some her daily pain.

Therapies and education

Kaitlyn started therapies before she was one year of age. During age 2 to 3 years of age she attended a local special needs school, that specialized in learning disabilities in children up to age 3. Through grade school to high school, she received special, physical therapy, occupational therapy and resource classes. Now in high school, she is in all special education classes focusing on job skills, self-care tasks, cooking and home chores. Her IEP team work together to give her the best education possible to prepare her for the world. She can learn but it needs to be done by repetition and extra time. She is approximately at the 4th grade level compared to typical peers. Part of the special needs diploma she is working towards allows her to intern at local businesses to learn hands on job skills. She is being trained to be a teacher’s assistant in the local middle school. Her dream job is helping others like her in the school setting. She earned an occupational diploma in spring 2021. She continues to attend high school to focus on her job skills in hopes of having a job when she ages out of school. Kaitlyn knows God made her different and does her best to enjoy every day to the fullest. She is very active in the special needs community…2 different cheer teams, dance team, baseball, self-defense class, multiple proms and many other special needs events provided by our hometown and local churches. She has out learned and out lived way pass the doctor’s expectations. We know every day with Kaitlyn is a blessing!