A Little NF Talking Circle

On March 11, 2012, the Littlest Tumor Foundation held its first quarterly “NF Talking Circle” at the Medical College of Wisconsin in Milwaukee, Wis. Present were adults, kids and families that are impacted by NF.

In the circle, people discussed their NF journeys with each other. It is powerful to talk with others who understand your situation. Meanwhile the children did activities such as painting, thank you card writing and game playing. Healthy snacks such as apples, blackberries, pita chips and hummus were provided. Beverages such as coconut water, along with pineapple and orange juice was served. At the conclusion, many of the attendees enjoyed the circle and it was decided by LTF leadership the “ NF Talking Circle” was a success and will be held again in early summer 2012.

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/

A Little Letter

Did you know there is NF research on the national level? The United States Department of Defense (DOD) has a sponsored Research Program on NF since 1996. Since then, great advancements for people with NF have been made such as: cell lines, pathways, as well as gene discoveries and replication. We need your help in the continued funding of NF research by the DOD. Please go to the petition on our website to sign electronically! Your help is much appreciated.

www.littlesttumorfoundation.com

Whole Food Plant-Based diet challenge results

The seven day whole foods plant-based challenge is over; let’s see how the interns did. Here at LTF, we like to have people to come out of their comfort zones and try something new! They all wrote about their experiences and how they were able to do it. Some of them found the whole foods plant-based challenge easy, while others found it difficult. In the end however, they all felt renewed and more aware of the importance of a healthy diet.

Boyd

As apart of The Littlest Tumor Foundation’s healthy New Year campaign, the interns and I had to go vegan for a week. As a frequent meat eater, I never thought I would be able to go vegan for the seven days. When my week started, the biggest problem I faced was finding food that I would actually enjoy while meeting the vegan standards. After roaming Wal-Mart for a good hour, I finally had a basket full of food and was ready to start my adventure.

The main food that I ate, and did not even realize was vegan, was whole grain spaghetti. Since I frequently work out, spaghetti and other vegetable dishes gave me the carbohydrates and protein I needed to sustain my energy levels. Another difficulty I faced was finding a dish that was vegan when I went out to eat. Two days in, I got extremely hungry and I was not at home to eat the meals I had made. Not knowing what to eat I caved, and ate a meal containing meat. I felt bad afterwards and told myself that I was going to commit to this challenge no matter what. All in all, the seven whole foods plant-based challenge was not as bad as I thought it was going to be. I learned how to cook a few healthy and delicious dishes that I will never forget, and at the end of the week I was feeling pretty good.

Kimberly

Journal diary of Vegan Efforts by Kimberly Klessig

Sunday, January 22^nd

I am a Master’s intern for the Littlest Tumor Foundation, and was given a challenge: 7 day plant-based, whole food challenge! I have always been a healthy eater in the past, but was excited to be given this challenge. On the other hand, I was a little uncertain about this specific kind diet. So I began by doing research and was AMAZED to find out what I/we as a society consume on a regular basis. All of the processed food and added ingredients makes our food mixed with all un-natural ingredients. Since today was my first day to start the challenge, I decided first to go do some grocery shopping. I did some research online of recipes and when I went to the store bought a lot of veggies and fruits! My food intake today consisted of a lot of veggies, a veggie burger and a sweet potato.

Saturday, January 28^th

I meet up with some friends for supper tonight. I ended up having a veggie burger. Once again I needed to ask the server for special cooking instructions. One of my friends is a vegetarian (she has ever since her senior year in college). She and I discussed her reasons as to why and she expressed her feelings as to “It just makes me feel better, I feel happy and healthy”. Her positivity was inspiring!

Sunday, January 29th

Today was the last day of the challenge. I have learned a lot in this journey to a new diet! I over all was pleasantly surprised to find I had more energy, felt like I was able to find many options to cook and felt full and not overly stuffed like I sometimes would in eating dairy and meat food options. This challenge opened my eyes to a new way of eating and encourages my efforts to continue this healthy way of eating!

Emily

The Beginning of My Vegantales

This past fall I was offered an internship at the Littlest Tumor Foundation (LTF) based out of Appleton, WI. I had never heard of LTF but I was excited nonetheless. Little did I know my boss, Tracy, is a woman on a mission. She has me performing the regular intern tasks such as thank you cards, cleaning up, and printing labels as well as giving me the opportunity to expand my portfolio and resume. What Tracy has also given me, whether intentional or not, is a whole new perspective of the food I eat everyday. Tracy’s son Sami was diagnosed with Neurofibromatosis (NF) a couple years ago. NF is a disease that allows nerve cells in a person’s body to turn into tumors because their tumor suppressor no longer functions correctly. Studies have shown that the growth of these tumors can be halted and even prevented by eating a plant-based diet, also known as vegan.

To educate myself on this disease and vegan lifestyle I was given a few videos to watch: Crazy Sexy Cancer, Forks Over Knives and True Life: I have NF. All of these movies were powerful in their own way but Crazy Sexy Cancer affected me the most. I cried, laughed, cried again, and then felt happy all in a two hour time frame; what I failed to realize at first is that I was also educated. What was I eating every day? Would I really feel better eating a vegan diet? How would those around me react?

One day I decided to answer these burning questions. Monday, December 5, 2011 was the day I started my vegan trial run. I no longer would eat meat, eggs, or dairy products. Basically, anything that comes from an animal is off limits. I would eat veggies, fruit, smoothies packed full of protein and nuts as my diet. I also would take a multivitamin and an iron supplement. The iron supplement is because I am anemic but the multivitamin is to make up for my lack of Vitamin B12. I knew from the beginning that it would be a learning process. I knew that I would mess up, learn about myself and those around me, and test my mental endurance. Here is my story on the transition from a cheese-loving, meat-eating college student to a vegan.

Contrary to what you may think, I am not trying the Vegan lifestyle because of animals. I am not an animal activist; I am doing this for one reason- my health. I will not be a Vegan in every sense of the word- only in my eating habits. Prior to this change, I considered myself a healthy eater. I always got wheat bread, low fat foods, I ate fruits when I could and I gave myself a few “cheat” meals throughout the week. I also exercised like nobody’s business- I run in half marathons and train for them quite vigorously. No matter how “healthy” I was eating, I was still always tired. I would fall asleep studying or feel really awful at random times. I thought it was the life of a normal college student, and maybe it is, but I didn’t like it. I wanted to feel healthier, I wanted to have more energy, and I wanted to control what I was eating. That is why I decided to eat a plant-based diet.

I may not keep this Vegan lifestyle forever or even an extended period of time but I am going to give it a try. The hardest thing for me has been reactions from my family and friends. After telling Tracy, my boss at Littlest Tumor Foundation, that I was trying the Vegan lifestyle she warned me that I would receive some wrath from those around me- she was right. When I first told my boyfriend, Brandon, he didn’t like it one bit. He was worried- worried I wouldn’t eat right, worried I would be unhappy, and worried I would impose it on him. He got plain upset that I was choosing to try Vegan. After a few minutes of banter, we finally came to the conclusion that he wasn’t mad I was going Vegan, he just didn’t understand it. Since I was new (and still am new) I didn’t have all the answers to his questions. What can you eat? What about protein? How can you not eat meat or dairy? Are you getting all the vitamins you need? What about eating out? What about the organic food- that’s expensive right? And the underlying thought- If you expect me to do this, you’re crazy!

My grandmother was also hesitant to the idea when I told her. “That costs way more money,” she said. I knew this would be an issue with a lot of people so I thought long and hard about it. If I have money to spend on jewelry, clothes, hair products, and shoes, I should have the money to invest in my health. What better to sacrifice for than your own physical well-being? I told her yes, Vegan is a more expensive lifestyle but if I am going to invest in something, shouldn’t it be my health?

I know I will be faced with questions and concerns as this comes out to more of my family and friends. I really haven’t told many people, primarily because I don’t want their negativity. Brandon, shortly after our talk, supported my change. He encourages me to keep with it and asks me questions as he is genuinely interested. Not knowing what is in food is something people have become accustomed to- so the fact that I look at labels, ask what is in foods, or opt not to eat something because I don’t know its contents is something totally new to Brandon. I hope that the rest of my family and friends accept this change as well as he has. I guess that is partially why I am writing this blog: to help my family and friends understand, to educate others, and give myself some time for self-reflection.

Cut Preservatives and Preserve Life

The Price of Health in Our Society:

Shopping vegan has completely changed my perspective on the health of society. Every time I go to the store I find myself leaving upset. Why? Well, the selection of vegan foods is very small compared to the non-vegan foods. It is so upsetting to look at cereal and pay up to three times as much for a healthy option. Everything in the organic section is extremely expensive when compared to the regular foods. Also the convenience factor is just not there for vegans. It is possible for me to spend less money on a meal buying vegan but this usually means I have to spend way more time preparing these meals. When I was learning to cook for this new lifestyle, I basically lived in the kitchen as these recipes take time. Of course, they got faster as I learned but they were still much slower than a regular meal. There are very few grab-and-go options for vegans which is a definite struggle in this face-paced world.

This link (click here) shows how much cheaper unhealthy food is compared to healthier options. This is not a vegan comparison but this is the point I am trying to make about how society molds us into buying unhealthy foods.

As you can see, the amount we must spend to buy healthy foods vastly surpasses the amount we spend on unhealthy foods. How can any person, especially in this economy- and with a family- justify spending 2-3 times the amount they could spend. Society is so short-sighted that health is put on the back burner and the amount of money saved is most important. Also, many people can't afford to buy organic foods which forces them to pack their bodies with preservatives. The majority of people feel entitled to cheap foods and products which means that they feel anything “overpriced” is, simply, not worth it. Food venders take advantage of this entitlement and continue to push the limits. They add more and more unhealthy chemicals in order to make products cheaper and, along the way, unhealthier. Someone needs to put their foot down and demand higher standards. I’d say we deserve it.
These “overpriced” foods are what fuel our bodies and give us energy. The amount of preservatives and other chemicals in the cheaper foods is sickening, literally. Think about it, look at our society- the world as a whole is bigger than ever. We are doing less and eating more. We are slow, we are tired and we are, in all honesty, killing ourselves. Disease rates are extremely high, which we try to fix with medications. If we could just go back to the roots of the problem- unhealthy eating- I bet we could fix a lot, not all, but a lot of health problems in people.

Bottom line:
Now I am not here to persuade anyone to take on the Vegan lifestyle. It is a commitment that has to come from your heart- I’m still not 100% there. I just want to make you think about what you are putting in your body. Yes, chips taste great- my personal favorites are Nacho Cheese Doritos- but what do they do for your body? They fill your body with empty calories and little nutrition. Am I saying never eat chips? Absolutely not! I am saying that people need to opt for an apple more times than they do for chips. And the same thinking goes for any other food. I have recently started to read a book called "In Defense of Food" by Michael Pollan. His introduction says it all: "Eat food. Not too much. Mostly plants." Simple, sweet and to the point. He also said that a little meat and dairy products won't kill anyone, but it should be seen as a side dish instead of a main course. It seems so simple, but yet we all struggle so much.

Mardy

Whole Foods Plant-based diet challenge day #1

So today begins the whole foods plant-based diet challenge with the Littlest Tumor Foundation, for which I am an intern. I looked at my fridge and not much was vegan or could be made vegan. Therefore I had to go and buy $55 worth of whole foods plant-based diet. Okay, so it sounds easy, right? Well, seeing that we are based out of Wisconsin, it's not. Dairy is in many things even my much beloved tortilla chips, so this next week is going to be interesting. I don't stand in any opposition to this, other than the fact that I generally don't have time to do my own cooking. I have two internships and a job that I am at, so the time I have to make all these dishes is greatly diminished. I know this week will go well though, because I do actually like to cook. Today I'm eating pasta with mushrooms, green onions, olives, red pepper relish and pico de gallo (of course!).

The only thing that I wasn't happy about was the fact that I had to give up cookies- many of which have either egg or dairy-based products in them.

Whole Foods Plant-based diet challenge Day#5

It's been five days since I've eaten meat last, but last night I had a BIG issue- going out to eat. So the story goes like this, I offered to take two of my friends, Dane and Jordan, to Wal-Mart for their weekly grocery shopping. In the end, we all tried to figure out what we were going to do later. Then someone mentioned that we should eat out after, my other friend and I agreed. Then it came to cross my mind...what about this challenge? I wondered if I would give into temptation and eat something with meat in it, being that I was used to eating meat at a burger joint. Oddly enough, one of my other friends, Jordan, actually had been a vegan and vegetarian in the past but now he had returned to eating meat. Then I asked my other friend, Dane, who works there, if there had been something like a veggie burger at all and he responded there was.
I was delighted. I had did find the veggie burger on the menu and I mentally rejoiced. I didn't know if the dijon mustard was vegan or not; I was too chicken to ask, Then the three of us went on about how Jordan had connections in all parts of Oshkosh. He was also discussed how he had many jobs ranging from paranormal investigator and to being a worker with the forest department. After about 15 minutes later, we got our food. My veggie burger was really good along with the endless steak fries. The steak fries weren't probably a good idea, but they were tasty none-the-less; I drank water instead of soda to make up for the steak fry indulgence. I am glad they had the veggie burger on the menu, that's something McDonald's needs to do. YUM!

As you have seen, the interns had both easy and difficult times trying the whole foods plant-based diet. Yet in the end, they all left with a more developed conscience on both diet and eating. While the blog posts progressed, one can see how the interns began to understand the importance of making healthy choices and the after effects of them. In the end, the interns walked away with a feeling of accomplishment during the whole foods plant-based diet challenge.

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

Interview with Rosie's mom

Please tell me about your family’s NF journey.

Rosie was born with café au lait spots and we didn’t think anything of it; I thought they were just birthmarks. At her six-month check up the doctor counted five spots on her body and mentioned neurofibromatosis,but said not to worry unless she had 6 or more. I took her home and found eight. I called him back and said, “now what?” the doctor then referred us to the NF Clinic at Children’s Memorial Hospital in Chicago. Rosie had her first NF clinic visit at 10 months old.

But it wasn’t until her third birthday that she was officially diagnosed with NF1;waiting for the official diagnoses and seeing the disorders indicators come out in her made for a very frustrating two years. Just after her diagnoses, she began randomly throwing up and was also very lethargic. Her pediatrician wanted to treat her for acid reflux, then it was “maybe she just can’t shake a virus”. But I knew in my gut something was really wrong, so I contacted the NF specialist and asked if he had seen this type of thing before. He wanted her in for an MRI that same day. The MRI revealed that she had an inoperable brain tumor and acquired obstructive hydrocephalus. It was the most devastating news I have ever received. We were faced with our child having brain surgery and placing a shunt in her brain to work as a drain for the excess fluid; it all happened so fast.

To date, Rosie has had thirteen surgeries, five of those brain surgeries due to shunt malfunctions. The other surgeries were due to other complications. NF caused the brain tumor, but the brain tumor’s location has caused all of Rosie’s other medical issues. For example: she has growth issues. At one point she was growing at a rate of 11 inches a year. It’s called Pituitary Gigantism. With Rosie, the growth hormone is on full-blast. She is the height of a nine-year-old despite being only seven. I remember when I had to buy her new shoes every month or so--it was crazy. I have to give her injections everyday to try and control the growth hormone. Since 2009, the growth hormone suppressant is working, but now I can see she’s going through another growth spurt, so we don’t know if it's working now, or needs another adjustment.

We’re running out of options with what can be done for her. With her it’s trial and error with treatment because of her particular diagnosis of NF; she has a very rare and complex case. We live day-to-day and try to make the best of it. She’s definitely a very special kid with what she’s going through. The toughest question she’s asked me was, “Am I gonna die?” Talk about heart wrenching, but we don’t lie to her, “everyone dies Rosie”, I can remember saying, “but most people just die when they’re older, like Nana.” She has seen too many kids loss their battles.

This year, her New Year’s resolution is to live to be 10. She is staying strong and living for the moment. She’s a positive kid; loving, caring and compassionate. She’ll comfort other kids in the hospital who are going through a hard time. No matter how long she’s here, she is leaving her mark on this world.

Rosie enjoys spreading joy, sunshine and hope every where she goes. She has spoken at two different high schools about blood drives and as a result they had a record number of kids sign up to donate blood;the impact she’s had is amazing. She’s also providing toys for family BINGO night for the Littlest Tumor Foundation’s Wellness Retreat. She’s raised over $300,000 for her causes and she’s collected thousands of toys for Rosie’s Toy Box. Rosie will talk to anybody and promoting her Toy Box (www.Research4Rosie.com) anywhere. She’s always busy doing something. Rosie has plans for the year for all the different things she wants to do. She even has a little rap that she has to introduce herself. She’s learned to take a challenging situation in her life and turn it into a positive one for everyone around her.

What type of neurofibromatosis does she have?

The short answer NF1. The long answer, Rosie has a very complex and extremely rare case; a combination of medical diagnoses. Her case has never been seen before or since her diagnosis. That’s the weird thing about NF, every case is so unique. It’s the same, but very different, the way NF manifests itself in each individual; it’s a mystery, so unpredictable.

Because Rosie has a very distinct set of syndromes, conditions and disorders that come together to make a very unusual case of NF. The “norms” that doctors have seen with other NF kids are atypical for Rosie. She is often times teaching her doctors, just how to treat her NF and brain tumor.

How is Rosie’s spirit through all this? I’ve heard she’s got a super-upbeat shiny personality.

She’s an amazing kid; very inspiring! She’s very charismatic and can strike up a conversation with almost anyone. I certainly can’t take all the credit for it, it’s God given. But it also has to do with the way we’ve handled all her medical issues, how we approach it. She knows she can trust us, that we are honest with her, we don’t dumb things down. We tell her in words she’ll understand and not sugar-coat things, she knows what she’s facing and she comes to terms with it on her level. I remember when Rosie was really little she was taking a bath and tried washing off a brown spot on her leg; I told her it was one of her NF spots. Later I had given her a brown-and-white spotted dog and Rosie said the dog had NF too. We told her from day one, that she had NF, how it made her special; that God made her that way and she should be proud of who she is, it’s apart of her, it doesn’t define her. I think that lots of kids have parents who want to hide it; I think it makes them feel ashamed, like it’s something they shouldn’t talk about or share.

Discuss how her sibling supports her.

Bella is very supportive of her sister, but it’s really tough on her too. She goes through a gamut of emotions with her sister’s conditions Being jealous of the attention Rosie gets, then feeling guilty for feeling jealous because she understands that Rosie has to have our attention at times, feeling angry because she got stuck with a sister with NF and cancer, but at the same time knowing Rosie didn't choose this life either. They share all the usual sibling rivalry like any other family. But she’s there for Rosie 100% and she chooses to be apart of everything, and she does have a choice, I think that’s important. When Rosie has a surgery, Bella is right there sitting on the hospital bed with Rosie, talking to her or watching TV with her before she has to go in. As for her personality, she’s a little quieter and isn’t nuts about the limelight, but she’s learned to speak her mind by listening and watching her little sister. Bella is a stronger person because of what she’s gone through with Rosie; she’s empathetic and very loving.

What are some ways your family has raised awareness for Rosie?

I publicly speak and raise awareness in anyway I can. We’ve educated family, friends, neighbors, other parents and classmates--our community really--about NF. At one time, some of the kids and even parents at Rosie's school worried that Rosie's NF was contagious. I’ve also learned that sometimes people don’t even know they have NF or weren’t told about it until later in life. Some pediatricians don’t even know about it. At least ours knew about the café au lait spots and had enough knowledge of its existence to refer us on to Children's. There have been nurses who have “heard about it” but have never come into contact with people who have had NF, while other nurses don’t even know about it. We take that opportunity to teach them; Rosie will lift up her shirt and say, "see" so they recognized it the next time they see it on another child We’ve even tried to get on Oprah and now we are pushing to meet Ellen DeGeneras. We have been incredibly blessed with all the people who have supported us; without all of their love and support we just wouldn't be able to reach as many people as we do. Both the girls were also adopted by teams through Friends of Jaycln Foundation. Rosie has two teams at North Central College in Naperville and Bella has one here in Palatine, the FREMD girls swimming and diving team. They love it! Rosie tells me everyday to live for the now, in the moment, to have hope, love and humor in our lives to say how you feel today and don't wait for tomorrow. She is a blessing in my life

What are some words of advice that you have for other families who have children with NF?

To be honest with their children and not make them feel different in a negative way. To help their child to be proud of who they are. They should surround themselves with knowledge, because knowledge is power; make a difference, get involved. We could sit around feeling sorry for ourselves, feel bad that NF has touched our lives or we could get off the couch and go do something about it. The best advice I can give to a parent of a child with NF is to be honest with your kids. I’ve met people who don’t know what to tell their children about NF. Get the support of others around you. Connect with other families who are going through what you are, who really "get it", who understand. There is this one family, whom I have never met in person, in Minnesota where they too have to cope with a loved one having NF. We support each other.

Rosie reminds us all to live life to the fullest. There’s this one commercial on TV and there is this woman standing on top of a mountain and Rosie said, “That’s the way we need to live mom.” – Overcoming everything and staying positive through whatever live throws at you.

Check out: www.Research4Rosie.com

www.youtube.com/watch?v=XaS7RMn_LXI Join: www.carepages.com/carepages/Rosiespage

Friend Rosie on Facebook! "RosieRose"

Follow Rosie on Twitter! "RockStarRosie1"

E-mail: RosiesToyBox@gmail.com

Falafel- Good and Good for you!

The first time I had falafel was in fall 2008 at the Caspian Kitchen, a now defunct restaurant, near the UW-Oshkosh college campus. The cook offered me falafel on pita bread instead of the usual gyros and I accepted. Prior to this, I had never had falafel in my life. As I ate it I thought about how good it tasted and how much could be learned from it. I vaguely knew about falafel, such as the fact that it is generally eaten throughout the Near and Middle East. With the closing of the Caspian Kitchen in 2009 that was my last encounter with this tasty and healthy dish. Fast forward to November 2011 with the Littlest Tumor Foundation.

As many of you know, LTF not only strives to find a treatment for the disorder neurofibromatosis, but also stresses a whole food plant-based diet. I was thinking that out of one of the days of the week, I would try to at least of one vegan dish. Yet, I was curious as to what the “main” dish would be. I was sick of eating noodles and vegetable soup, and I remembered that we had pre-made falafel mix at the Oshkosh Pick ’n Save because I had seen a box while facing groceries one day. I had considered driving to Appleton’s Gyros Kabob for falafel, but that I didn’t know the exactly location and I figured I’d have a good learning experience making it myself. For that week’s shopping, I went down to Pick ’n Save to get some falafel to be the “main dish” for the following lunches and dinners. I found the box of falafel and now I could make my own falafel.

Falafel proved to be a very good break from animal-based foods. I found that mixing the water and falafel mix very fun. Instead of mixing it with a spoon, I used my fingers and mashed it together like dough. I felt like a kid again. This was also the first time that I had done any pan-frying in my life as well. I also enjoyed rolling the mix into balls, because it reminded me of making cookies. For those who are concerned with the frying of falafel, a person can bake them in the oven 40 minutes at 425 and being flipped every 10 minutes as well. One of the most amazing things about falafel mix is that you can CLEARLY READ all of the ingredients on the box. There are no large words at all with twenty-something letters that only a professor can read. Falafel also is not only vegan but also kosher as well and it also is a great source of iron, fiber, low in fat without saturated or trans-fat. Who ever knew something so delicious could also be so good! As soon as I was done cooking it, I couldn’t wait to try it. I put some hummus (instead of tzatziki sauce) on pita bread along with some lettuce, onion and tomato, and topped it off with the falafel I had made. It was phenomenal. At long last, I experienced the same wonderful taste that I had from three years prior! I was so grateful to have found it once again.

I would highly recommend falafel to anyone looking for a great and healthy alternative to a meat-based sandwich and also to those who maybe are considering becoming vegetarian or even vegan. Perhaps, falafel could bring a family together. It could easily be made with children for the part with the mixing of the water and mix. But we can leave the frying (or baking) to the parents! Falafel is a terrific and healthy food that can be easily made by anyone and a great addition to anyone’s diet.