A Kind Little Reflection

Throughout August, the Littlest Tumor Foundation did 3,000 random acts of kindness to those around us. It’s been quite a trip even through the retreat. Some of us pushed carts, opened doors, baked cookies, cleaned up litter and trash and so much more. We’ve called old friends from the past and visited relatives. 

LTF even sent warm wishes to people in an assisted living center! With all these little acts, we hope to help make the Fox Cities and surrounding areas a better place to live, work, and play in. We firmly believe that everyone can give a little. What can you do to make someone's day brighter and better? What’s your little?

Interview with Kelly Janke, M.S., researcher of NF children and learning issues

NF not only causes issues in terms of tumors on the body and other medical ills, but also learning issues. Please read the following interview with Department of Psychology's Kelly Janke, M.S., of the University of Wisconsin-Milwaukee to learn more about learning issues and NF children.

1. Discuss some of the learning issues that you have seen with NF children in school.

Children with NF-1 are more likely to have learning difficulties than their siblings or same-age classmates who do not have NF-1. The rates of learning disabilities range from 30%-65%. Difficulties have been seen in all academic areas including word decoding (sounding out words), reading comprehension, math calculation, math problem solving, and spelling. We really see a lot of variability in the learning profiles of children with NF1.

2. I understand you’re doing a study on NF kids and their siblings, could you discuss that a bit further?

For our study, we recruit children with NF-1 and their siblings between the ages of three and six, and plan to follow them annually up until the age of 10 if possible. The goal of the study is to examine the cognitive and behavioral characteristics of NF-1 in young children to determine if we can see early signs of learning and attention problems. We are also hoping to learn more about the development of cognitive skills over time, and determine if this development differs from their siblings or other typically developing children.

3. What are some of the preliminary results you are finding?

We have found that learning and attention problems can in fact be identified in the preschool age range. There is no clear pattern to these difficulties. For example, some children have difficulty with verbal tasks (e.g., naming pictures, following directions), but do well on spatial tasks such as building with blocks. For other children, the opposite pattern is seen. Regardless of the pattern, most children with NF-1 have some difficulty in at least one area, although it may be mild. It is important that these difficulties can be identified at this young age because that allows interventions to be put in place earlier and prevents more pronounced learning and attention problems.

4. Discuss some of the medical drug studies that are being done.

Our research lab is not involved in medical drug studies, but please see http://www.ninds.nih.gov/disorders/neurofibromatosis/neurofibromatosis.htm for more information.

5. Have you found NF families having issues with the school in regards to learning issues?

The success that families have in getting services needed is variable based on the school system and the severity of difficulties the child has. NF-1 is associated with more mild difficulties compared to some other genetic disorders; however, children may qualify for an Individualized Education Program (IEP) under the Other Health Impairment category. This category is used when children have an identifiable medical condition (like NF-1), and have learning difficulties associated with the condition that require extra support in school. Children with NF-1 who are also diagnosed with ADHD may also qualify for a 504 plan. Generally, a 504 plan is used instead of an IEP when supports in the classroom alone (without additional special education supports like therapies) can help children succeed. Sometimes the learning or attention difficulties seen for children with NF-1 are a bit subtle. Parents may see them clearly, while schools see only mild differences from peers. In those cases, it can be challenging to show the school that the child needs extra supports.

6. Name some ways that parents can help their NF children who may have some learning issues.

Parents can help their children be successful by getting them a comprehensive assessment at an early age. These assessments are used to identify strengths and weaknesses so appropriate interventions can be put in place. This can help families get the services needed at school and direct parents about how to give their children extra practice with academic-related tasks at home. For example, if their children are having difficulty with early learning skills, it will be important for families to spend time playing rhyming games and reading together, and to talk about numbers and math-related concepts in everyday contexts. Parents can also help their children improve their attention and learn strategies to complete tasks by building up the amount of time their child can spend working in a structured setting.

7. Are parents reluctant to tell the teaching staff NF kids may have learning issues, if so why?

Some parents choose to not tell teaching staff about their child's NF-1 diagnosis to ensure that (s)he is not treated differently than other children. However, awareness of the diagnosis and the types of interventions that may help children with NF-1 is necessary if these children are going to get the services needed. We have found that most of the time, parents find it helpful for teachers to know that their child has NF-1.

8. Can NF kids also have attention issues such as ADD or ADHD in addition to any issues with NF, if so how often does this happen?

ADHD with or without hyperactivity is very common in the NF-1 population, with rates ranging from 30-60 %. For some, there are milder attention problems or organizational difficulties that don't reach the level for diagnosis, but nevertheless have some effect on the child's ability to do their best at school.

9. Name some of the behavioral issues that NF kids might have.

Given that attention problems are so common in NF-1, children with a diagnosis of both NF-1 and ADHD may be at risk for social difficulties. It will be important for parents to teach their children socials skills if any difficulties are noticed, and to give their children opportunities to practice these skills in social situations.

10. Explain the psychological issues that NF kids with learning issues have.

It is possible that children with NF-1 may experience anxiety or self-consciousness related to their physical symptoms and learning problems. There is not currently a lot of research looking at how common feelings of anxiety or withdrawal are in children with NF-1.

11. How and in what ways do the NF learning disorder differ and can they be confused for other disorders?

There is not yet enough research looking at whether the learning problems that children with NF-1 experience are very different from the learning problems of other children with learning disabilities but do not have NF-1. Learning problems in NF-1 are currently assessed in the same way that they would be for other children.

12. Explain some ways that NF kids with learning issues are helped. Are there special programs for them to help them succeed?

Children with NF-1 often have fine-motor difficulties and some have language difficulties. Depending on their pattern of strength and weakness, they may benefit from physical, occupational, and/or speech/language therapy services. Participation in extracurricular activities can give them opportunities to practice social skills. It may also be beneficial to attend NF-1 camps or find a local group to provide social support and show children with NF-1 that they are not alone. Local groups can be found at http://www.nfnetwork.org/

Cancer Survivor Hollye Harrington Jacobs Shares Story

Since the time of my breast cancer diagnosis, we have talked openly with our five year-old daughter. While the personal nature of this circumstance made the conversations emotionally challenging, my professional experience as an adult and pediatric hospice nurse gave me both the tools and confidence to ensure that we gave her the developmentally appropriate answers.

Right after my treatment finished, our daughter has been revisiting a lot of the original questions as well as asking some new ones. For example, the other day while driving to school, Finally Five asked, “Do you think that your cancer will come back?” GULP.

So, I thought I’d take this opportunity to share with you her questions and our answers. These questions tend to be typical of most children affected by a cancer diagnosis.

• What is cancer?
• The body is made up of cells. Cells make our bodies work. They are so tiny that you need a microscope to see them.
• Cancer cells don’t look or act like normal cells. They don’t allow our normal, healthy cells to work properly. They can grow very fast and spread. Cancer cells may group together to form a tumor.
• There are many different types of cancer. Cancer can grow anywhere in the body.
• Finally Five wanted to know if a person could get cancer in your eyes, on your skin and in your legs.
• There is an iPad application called 3D4medical that has an image of a breast cancer cell. It is an ominous looking beast of a cell. This was really helpful for Finally Five to envision what was in my body and to then understand the sense of urgency (& drastic measures!) to get it out.

• Is cancer contagious?
• Cancer is not something that you can catch from someone else like you can a cold or the flu.
• You can be close to the person who has cancer and not worry about catching it.

• Did I cause cancer?
• No. Nothing that anyone does, says or thinks can cause cancer in someone else. Ever.
• Though they will rarely ask the question out loud, YES, children wonder whether they caused cancer. It’s sad, but true. If this question isn’t addressed, children can carry this fear (that they had some hand in causing cancer) with them into adulthood.

• Why do people get cancer?
• Most of the time, no one knows why someone gets cancer. It’s hard to not have all of the answers, but the truth is we don’t.

• What causes cancer?
• There is still a lot we don’t know about how cancer begins and what causes it?
• Sometimes cancer can be caused by some chemicals, air pollution (smoke), certain viruses and other things inside and outside the body.

• Do children get cancer?
• Yes, unfortunately children do get cancer. It is rare for children to get cancer. More adults get cancer than children.

• Who will take care of me?
• There are lots of people who will help me take care of you when I’m feeling sick. When I’m finished with my cancer treatment, I will be strong again. When I’m getting my treatment, I’ll be around as much as I possibly can and we will do different things when I’m sick, like watch Silver Lining movies and read books.
  
  Another reason to process information about cancer with parents is that children learn about cancer from other sources, e.g., school, television, the Internet, their classmates, and listening to other people talk. Some of this information is correct but a lot of it is not. Not knowing what is really going on or how to cope with information about cancer can be terrifying to a child.
  So, doesn’t it just make more sense to hear the information at home?
  Talking about cancer does not have to be traumatic. If anything, NOT talking about it is ultimately more traumatic. In the past, misplaced embarrassment about cancer has allowed misunderstandings and fears about the illness to grow. Remember: there are always professionals who are willing and able to help when parents feel overwhelmed by talking with children (Silver Lining). Engaging professional help when coping with cancer is a sign of strength and resourcefulness.
  
  

  Honesty is the first chapter of the book of wisdom.

  ~Thomas Jefferson
• Go to the following sites to learn more about Hollye:
• www.TheSilverPen.com
• hollye@thesilverpen.com
• twitter.com/hollyejacobs

Neurofibromatosis intern

Hello all,
My name is Mardy Wiesman, a recent spring 2011 graduate from University of Wisconsin-Oshkosh. I had gone to college for a journalism degree with an emphasis in advertising and religious studies minor. I enjoy writing and my dream job someday will to be a copywriter. I have recently started at the Littlest Tumor Foundation (LTF) in late November 2011. Here, I am going to be in charge of the blog and contacting fellow bloggers on the net to join the LTF blog.
Prior to my internship here, I had no idea what neurofibromatosis (NF) was at the time. I sometimes would watch The Learning Channel (TLC) from time to time and there were a handful of specials on the disorder from time to time, although I forgot the disorder’s name over the course of time. After reading the book “Understanding Neurofibromatosis: 2nd Edition An Introduction for Patients and Parents” by James Tonsgard, Ph.D., for LTF, I was able to connect the disorder with the documentary specials I had watched years before. One of the points of both the book and the documentaries was the mentioning of café-au-lait or coffee mixed with milk-colored spots that were present on those who were afflicted with NF.
Then it came back to me. I remembered how some people would have these spots on their body and that would be all they would be afflicted with. Then I remembered how other people would get a more severe case of NF and have neurofibroma or tumors all over their bodies. Yet at the same time, NF is a common, yet relatively unheard of disorder. Here at LTF we are spreading the word on NF by means of social media such as blogging and Facebook, but also through events and campaigns. Together we can find a cure for children with NF before they reach adulthood. Join LTF today and soon we will find a treatment because, “Tumors in children, we do not like them!”

Neurofibromatosis and Green Juice

Posted on November 29, 2011 at 11:40pm

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I was moved this week when I read an article written by my friend's sister. I wanted to use my blog this week to share it with you for two main reasons.

First, I wanted to give some publicity to the rare condition of Neurofibromatosis as it is something that many of us know nothing about. Briefly, it affects 1 in 3,000 children and causes tumors to grow anywhere in the body including the brain and spine and can cause a series of other significant health issues. They range from serious skeletal abnormalities, to endocrine issues, to difficult-to-treat cancers. Much is not understood.

Tracy Wirtanen, the author of the article I read, and my friend's sister, is the mother of an 8-year-old boy, Sami, who is diagnosed with Neurofibromatosis. You can read her blog here, where she wrote as a guest on Kriss Carr's website crazysexylife.com and you can find out more information about Neurofibromatosis at the website of the foundation she created at www.littlesttumorfoundation.com

Secondly, in her article, Tracy talks about the changes she and her family have chosen to make with regard to their nutrition, both for Sami and the other members of her family. She talks about the fact that Sami drinks green juice every day, and loves it, he even asks for it! I bring this up, because it highlights something that can get forgotten when we talk about juicing. This stuff is really good for you, at a cellular level. There is a real theraputic benefit in drinking vegetable and fruit juice. Our bodies can use the nutrients provided by the juice to both prevent future tumour growth, and help the body deal heal itself.

Yes, juice is a great vehicle to boost health and vitality, and help us to clean our systems when we have overindulged, but there is a more serious side to its benefits as well. If incorporating it into your diet will allow your body to battle cancer tumours, or give your body the tools it needs to prevent them developing in the first place, then what an incredible gift you can give to yourself, and your children every day! The gift of good health!

For those of you with juicers, then try the following Green Juice recipe, packed full of antioxidants, chlorophyll and good health.

Green Delight

3 kale stalks

1/4 pineapple (not peeled)

1 apple

1/2 piece ginger (not peeled)

1 stick celery

1/2 lime (not peeled)

Pack the kale into the juicer chute, and put the apple on top, then whizz every thing through the juicer. If you want to add some extra nutrients, then add a spoonful of spirulina to the juice and blend it with some ice.

Please do click on the link to both Tracy's article and her foundations website, she is doing terrific work to educate us about this potentially devastating disease.

If nothing else, give Tracy, Sami and her family a thought or a prayer over the coming weeks, and if you are lucky enough, be thankful for you and your families good health.

Happy Juicing,

Jx

http://millburn.patch.com/blog_posts/neurofibromatosis-and-green-juice

A Journal of Cookery

THURSDAY, SEPTEMBER 22, 2011

Brussel Sprouts

My kids love brussel sprouts. It is the go-to vegetable in our house, when all else fails (nutrition-wise). So I am happy they are in season! I normally just cut them in half, brown them with a bit of butter and finished them with a bit of stock till softened in a skillet (s&p, of course). But I happened upon this recipe and liked the idea of beans and brussel sprouts together. Adapted from an old Bon Appetit magazine (brussel sprouts from Farmer's Daughter http://farmersdaughter.farmvisit.com/):

Brussel Sprouts with Cannellini Beans

3/4 cup dry cannellini beans (or 1 can of cannellini)

1 cup vegetable stock

2 lbs brussel sprouts

4 cloves of garlic, chopped

2 tbsp butter (plus an additional tbsp for finishing)

1/4 cup fresh grated parmesan

Salt and pepper

Soak beans overnight...drain, rinse and cover with cold water (about 2 inches higher than the beans). Bring to a boil, reduce to simmer 1 hour (add a couple cloves of garlic for flavor...salt when there is about 15 minutes left to go). (Skip this step, if using canned.) Melt 2 tbsp butter and toss w/brussel sprouts...roast in oven at 450 for 15 minutes. In a skillet, saute garlic in remaining butter and then add stock and brussel sprouts for 5 minutes...then beans, salt, and pepper. Place in serving dish and add cheese.

(Am going to use this opportunity to plug my favorite beans,

Rancho Gordo, www.ranchogordo.com)

*Sidenote...I ended up cutting the brussel sprouts in half at the end, and would recommend cutting them in half before roasting in the oven.

Interning for a Solution

Hello!

My name is Kayla Guns and I am the Littlest Tumor’s intern. Before this summer I had no idea what Neurofibromatosis was and defiantly didn’t know how to spell it. But it didn’t take long to learn that this disorder had huge impacts on families and the people who live with it, especially children. Our motto is “tumors in children, we do not like them,” which I think sums up LTF in a nutshell. The Littlest tumor Foundation is truly inspiring, the people involved work so hard to promote awareness and generate the funds needed for researching a cure. The fundraisers and events that LTF puts on are always fun and allow for people suffering with NF a chance to forget their worries and spend a day with their families. Also I am impressed with the determination of LTF to become a national even global presence in the NF community. As a small non-profit, I didn’t think LTF had much of a voice outside of the Fox Cities but as the summer progresses I’ve learned that LTF is already known nationally and we’ve even had a sponsored event in Africa! I am excited to continue working with LTF this summer and see what else we can accomplish for NF. Here at LTF we are asking people to give a little, because every little bit helps. “What’s your little?”

Americorps Blogs

My Soulution

It is hard to believe that the beginning of August is right around the corner already at the Littlest Tumor Foundation. My journey at the foundation thus far, has been a remarkable experience. Too often individuals disregard lessons learned along their life path. With the pull of the universe embedded in technology and the business of schedules, people rarely take the time to give a ‘little’, reflect a ‘little’, laugh a ‘little’ or volunteer a ‘little’. In finding a solution, I have learned that it takes a ‘little’ heart and soul.

Over these past summer months, putting my soul into creating awareness, promoting wellness, and developing research, has made the solution come alive in my heart. Being able to work with children who have Neurofibromatosis has been extremely rewarding. Courage and bravery in their smiles, and positive energy it their attitudes, has taught me that the fight is always worth it. Now, more than ever, I strive to be a part of the solution. Creating awareness has been a major part of my solution, as well as pushing myself to eat my greens and practice moments of wellness. It is the ‘little’ things that can go a long way and create a big impact. I often ask myself, “what is my little?” What can I personally do today to make a difference tomorrow? When I start asking myself these ‘little’ questions, the solution becomes achievable!

Emily Wagner

23 Year Old Female, Single and Seeking a Solution

This week wraps up out 30-day Awareness Campaign and the theme is Solution. According to Dictionary.com, there are three definitions of a solution.

1. The act of solving a problem, question, etc.: The situation is approaching solution.

2. The state of being solved: a problem capable of solution.

3. A particular instance or method of solving; an explanation or answer: The solution is as good as any other.

So what I have been doing to be a part of the solution? Well the answer is not simple because the problem of NF has not yet been solved but I feel my work and dedication to the cause and the Littlest Tumor Foundation have aided in the solution.

Being a part of the solution means stepping outside of one’s comfort zone, doing something daring and exciting, reading and research, creating activities and events for awareness raising, having an open mind and devotion. A solution is not always easy to come by but there are so many things to learn along the way.

During my short time with the Littlest Tumor Foundation, I have worked daily with Emily, the best coworker one could ask for. I have also learned a great deal and have been part of a multitude of work for the purpose of finding a solution, including: an expanded knowledge of social media, how to organize an entirely free three day retreat, created a month long campaign, have been featured on the radio and in the newspaper, have met celebrities who are also dedicated to finding a solution for those charities they support, written countless letters to media outlets including news broadcasting stations, magazines and newspapers, created a quarterly newsletter for our foundation and attended community meetings and events. Emily and I have worked tirelessly to be part of the solution and continue to give our talents, skills and vigorous passion to find that solution.

Please join us to keep the movement going. You can do so by writing your politicians, getting involved in an organization such as the Littlest Tumor Foundation, attending events and benefits put on for NF and for children, just taking some time to read up on the most recent research and scientific/medical breakthroughs, etc. Do what you’re able. Anything will do. We are happy to have anyone and everyone on board for the solution.

“The important thing about a problem is not its solution, but the strength we gain in finding the solution” --Unknown

Yours truly, Bailey Murph

Kristi Hopkins NF author blogs for us!!

Reason I wrote the book.


For years I lived my life hiding and denying the symptoms of Neurofibromatosis. When a doctor finally "officially" diagnosed me, in 2007, hiding was no longer an option.


It was time to face NF head on! At first facing NF was met with anger and frustration and I was becoming just like my mother.


One day, after a particularly negative blog post, my husband asked me a question, that changed my perspective forever. "Kris, I love you, and that's a great blog post....But, what if you change the way you look at NF....Why not start inspiring people to do more than just survive NF?"


That day, 'Thriving with NF' was born, and became the start of a life-long process, that I try to live up to every single day.


After a year of sharing my stories on my blog, my husband and I talked about how neat it would be, if we turned all those stories, into a book.


We worked for a year. It wasn't easy to understand that people would really want to read about my life. I kept fighting my husband and he fought back...


I never realized how many stories I had. I never realized that my attitude switch would go on to touch so many people.


Now "Thriving with NF" has become a way of life. A bar that is set, that I try to reach every single day. Some days I do better than others, but the important thing is, is that I try!

Bailey NF young teen blogs for us!!!

• 
  
  
  
  
  When I found out that I had a tumor that needed chemotherapy, I felt like I was in a dream. "This isn't happening to me", I thought.
  
  I saw the shock in my mother's eyes, then I realized how serious it was.
  
  This wasn't just a simple NF tumor. This wasn't something to just watch. This was something that needed treatment, FAST!
  
  I honestly felt like they were talking about some other kid. I mean, I didn't have any symptoms. I didn't "feel" like I had a tumor in my head.
  
  Ever since my mom was diagnosed with NF, I have watched her attitude and how she deals with all this stuff. I made up my mind that I wanted to be exactly like her.
  
  Sure, I am scared...But I have decided to live my life the best I can. And to make all my decisions be ones that show someone who is looking at the bright side of things.
  
  Chemo isn't easy, Life isn't easy, but a better attitude makes it much MUCH better.
  
  I am glad to be like my mom. She helps so many people realize that living with NF doesn't have to be so horrible. I hope that I can do that for people too.
  
  Bailey Archer

Oh Veggies!!

Oh veggies!

Today marks the end of the 7-Day Vegetarian Challenge. At first I was unsure if I’d be able to pull through but I did it. I never realized how often I ate meat with my meals. I am generally not a big red meat eater, but chicken is one of my staple foods. This week, my staple became trail mix, not a bad substitute but definitely not chicken.

So how did I do it? The internet (and the support of my roommate)! In my search for delicious and nutritious foods, I visited a ton of websites, including: FoodNetwork.com, food.com, recipes.com, etc. Needless to say, the internet was ultimately my savior. Throughout the week, I called myself an ovo-lacto vegetarian, meaning I did not cut out eggs or milk. I think that would have been too much of shock to my system because, believe me, I felt different. I’ll list some of my symptoms I experience below.

Symptoms of vegetarianism:

No energy: I had heard that this was possible and it is completely true. Your body will initially have a rough time adjusting and you may feel fatigued, but it’s supposed to get better after a week or two. For this reason, I chose trail mix to munch on. In order to get through this slump, you have to find something to substitute for the lack of protein and iron that you’d normally get with meat.

Stress: What do I make? If I make this or that am I still following the rules? These were questions I was bombarded with daily, but was able to overcome. Again, it was the internet that saved me, and the help of a vegetarian friend that has to work around a meat-eating spouse. I learned to really use my resources to lessen the stress of going vegetarian.

No time: The time issue was something I had to combat every day. I’m on the go every second of the day and found that I really had to think about what I was going to eat before I headed out in the morning. Being vegetarian takes a little extra time management in the beginning, but its doable.

Crankiness: I was totally cranky this week. I had the urge to just go pick something up at the end of a long day of work and found that I couldn’t, or if I did I had to be very selective and conscious about what I was choosing. The crankiness was of course accompanied by the lack of energy and stress but was something that can also managed with the proper planning.

Overall, the week was difficult and at this point, I have realized I am in no way ready to be a full-fledged vegetarian. Despite the difficulties of the week, it helped me to realize what I do put into my body and the ability to take steps toward a healthier me. What I do know, is that I will attempt to eat less meat in the future. I’m thinking I’m going to go towards the poultry route. I’ve learned a lot from this experience and although I cannot manage a strictly vegetarian diet at this point, I vow to make steps to lessen my meat and processed food intake.

Yours truly, Bailey