Little's Big Thank You and Big Farewell

As I look back at this year’s Kids-on-Chemo Drive, I cannot help but feel overwhelmed with gratitude. The Fox Valley community rallied behind us in a big way! Littlest Tumor Foundation found themselves supported by a complete mix of community members including: fire fighters, neighbors, college students, schools, family, friends, and the list goes on... 

This particular Kids-on-Chemo Drive was a stand-alone event for the first time ever! It was a big task but the LTF crew pulled through with A LOT of help from volunteers, community members and participants.

The stars of the night, the headshavers, did an incredible job collecting pledges. No matter how big or small the amount collected, the donations we received will go to a great cause! I think a little recognition is in order:

Our Sami Cup recipient, raising $2900, was Linda Elliot. This was the second year she shaved her head for this event and we are so happy Linda uses her incredible drive to further our cause.

Other headshavers include Paul Williams, Kevin Martinson, Adam Mohr, Justin Dull, KC Stadler, Ryan Lee, Nick Davidson, Boyd Van Landghen, Zack Akin, and Brent Debenedet. We even had a few people sneak in without giving us their names! That is how eager the community was to help! In addition to headshavers, three lovely ladies donated their hair for Locks of Love: Kali Thompson, Sara Burns, and Megan Mau. 

Another key part of our event was our volunteers. We recruited the most amazing volunteers we could find! We wanted to give a BIG thank you to all those who donated their time and efforts to making this event the great success it was. 

This event also marks the end of my internship with the Littlest Tumor Foundation. What an experience! If I had to pick the most important thing that I am taking away from this experience, it would be this: Everyone wants to be a part of something bigger than themselves, even if it’s in a little way.

I am very thankful that I could be a part of the beginning stages of a foundation surely destined for greatness.

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

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

Healthy miracles with My Culinary Angel Linda Ott

Q) Tell me about yourself i.e. hobbies, activities, parenting…ect.

A) My hobbies include gardening, sewing, cooking (of course!), reading, and traveling both in and out of state, biking, swimming and playing with my two daughters. I have always loved cooking and that is my first love even before I decided to cook for a living. When I’m not cooking for a client, you can usually find me in my kitchen cooking up a special treat for a bunch of teenagers or my own family.

Q) Tell me about the type of cooking services that you provide to people.

A) The mainstay of my business is cooking for people on a weekly, bi-weekly or monthly basis. Most of my current clientele reached out for me because they were struggling with a new diet i.e. diabetes, low cholesterol, low fat, etc. I also do fun cooking parties where people cook with me and then enjoy the fruits of their labors and cooking classes for children. And from time to time, I do dinner parties for small gatherings in my clients’ homes. Some of the people I cook for are overwhelmed because of they have to give up eating something or have to start eating new foods due to what a dietician said. After just a few cooking sessions, they see there is a new world--a new set of foods for them to choose from. I know I have succeeded when I receive wonderful comments about the new foods I have introduced to my clients. Sometimes I help them go through their kitchen cupboards, and help them clear out the unhealthy food choices based upon what the dietician has told them. Other times, I meet the clients at the grocery store and help them learn to shop for healthier choices. It’s just overwhelming for them to adjust to their new lifestyles, but at the end of the day, I find it very rewarding to help them.

Q) What are you areas of expertise in the cooking field and why you chose them?

A) I enjoy cooking healthy meals & surprising my clients with delicious and nutritious meal options--eating healthy doesn't have to be boring! I do a lot of research on the recipes I make. The web has truly made it simple to do this with the recipes. I have subscribed to various newsletters that help me with menu planning for specific dietary needs.

Q) Where you were you taught about this type of cooking? What motivation you to start this?

A) I learned most of my cooking skills from my first mentor at a private resort in upstate New York. William Schwartau took a chance and hired me. He taught me to make some interesting dishes such as beef tongue and ox tail soup! I went to college and learned learned to perfect my cooking and menu planning skills. After college, I went to work for Marriott. I have worked in every hotel department and have always come back to my love of food either working in restaurants or catering. After 31 years of moving around for a company and working 60-80 hours a week 365 days a year, I decided to take my skills and become self-employed. I started My Culinary Angel, LLC about a year ago.

Q) What types of dishes do you cook for others and at home?

A) I am pretty fortunate that I can follow any recipe and have success. Usually with a new recipe I’ll follow it the first time and the second time, I’ll put my own personal touch on it. At home I love to experiment--when I cook for my family I don’t often use recipes.

Q) Do you suggest people by local or homegrown food or going and buying food? Explain.

A) If you have the space and the time in your schedule, growing your own food is not only healthy, but very rewarding. I grow my own herbs during the spring and summer, and during fall and winter I move them from outdoors and into my basement; it kind of becomes a jungle. Local farmers markets and food co-ops are also a great option. When I can, I always buy organic to avoid pesticides.

Q) I understand that you cooked for the Littlest Tumor Foundation retreats, why did you choose to help them?

A) After Tracy called me to meet with her, I looked up her info on the web. She gave me a run down about cooking for her Family Wellness Retreat in Door County. I had already decided before I met with her that I would donate my time for her retreat. I have been blessed with two very healthy children. I jumped at the chance to help these families have a great weekend in a special place.

Q) How can parents get their children to integrate healthy food into their diets?

A) Healthy eating should start at birth. The more you expose them to healthy foods, the more likely they will choose to eat healthy. Remember, kids are watching what you eat as well--set the right example. There is a lot of comfort food, it’s truly a mindset of choosing and I think that if you talk to anyone in the healthcare industry there are things a person can do. I think that people aren’t going to change the way they eat, until they are ready to change their eating habits.

Q) What has worked for you to get your children to eat healthy?

A) I raised them the same. My first child was raised on a vegetarian diet until about three when she came to Wisconsin. My 15-year-old has always been an easy-to-please kind of eater. She will try anything and enjoys healthy food--not to say that she doesn't enjoy junk food but if I stock my kitchen with good food, she will choose to eat good food.
My 6-year-old, on the other hand, is my picky eater. As with most kids, her tastes are constantly changing--one week she loves carrots and the next week she won't touch them! We grow a lot of our own veggies in the summer and that seems to help to get her to try the veggies after she has worked so hard to grow them. She also loves to cook with me and here again, if she is involved, she will try it. She has her days, some days I make Mac’ n Cheese but she also eats broccoli. I sometimes have to pick my battles. During the summer she is more likely to eat vegetables because she could see how they grow. I also find that she is more willing to try new things if they are simple--not a lot of sauces or seasoning and she prefers to eat one food at a time so no casseroles for her. I find that when I cook with my daughter she is more willing to try it later.

Q) In closing, what are some tips or even advice to give to people who are trying to eat and cook healthier?

A) The web has made searching for recipes so much easier than scouting through countless cookbooks. From what I have read I have learned that fresh is best, but frozen is the best second choice. When I do my own freezing I do them in servings of four and when it’s for a family or yourself then fresh is the best idea to go.
Take baby steps; don't try to overhaul your diet overnight. Start by adding a new fruit or vegetable each week or every other day. Try practicing Meatless Monday. Whip up a new flavored smoothie each week.

The Littlest Tumor Foundation thanks Linda Ott for this interview on how people can change their and their families’ lives by using healthier and tasty cooking options. If you are interested in her services or contacting her, Ms. Ott can be reached at:

My Culinary Angel LLC
A Personal Chef Service
(920) 904-1684
lindaott@hotmail.com
or check out her website at:

My Culinary Angel

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