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?

NF and Families

The Fight Against Neurofibromatosis

Tumor growth in children affects families, too

By Kimberly Klessig

 

Health and nutrition play an important part in family wellness for children with health issues and their families. Both chronic and catastrophic health issues in children really have an impact on entire family units.

Neurofibromatosis (NF), a little-known disorder that begins in children with uncontrollable tumor growth in their bodies – such as in the brain and spine – as well as a series of other significant health issues, can create stress for children with the disorder and their families. First hearing the diagnosis of NF creates emotional strain for everyone involved.

Currently, there is no known cure or effective treatment for NF. The unpredictability of the tumors returning, even after surgery, can send children and their families on emotional rollercoaster rides.  The financial strain for medical expenses, such as chemotherapy treatments, surgeries, scans and procedures, can also take a toll.

One way for families to alleviate some of that stress over emotional and financial matters and to better focus on ways to balance the NF health crisis and to build wellness, are through family wellness retreats. These experiences are wonderful ways to provide families with opportunities to learn, educate and promote family wellness.

Family wellness retreats for parents of children with NF might include nutritional therapy, yoga, relaxation, doctor question and answer periods, group support building sessions and nature walks. They also provide time for families to strengthen bonds through the difficulties inflicted by NF and the stress of the treatments.

There is a lot of literature that supports that stress reduction and plant-based nutrition can have a positive effect in disease progression.

One technique that can help families reduce the stress from NF and its treatments is yoga. By doing yoga, participants connect with themselves and others around them in a healthy and relaxing manner. When done as a group, yoga can build bonds between NF families and create social networks that can last a lifetime.

By following healthy, plant-based diets at the wellness retreats, families reconnect with nutritious, wholesome foods. Families can easily make these simple recipes together at home after the retreat for very little cost. Despite the perils of childhood disorders and diseases, family wellness retreats are a great way for families to form connections with each other and cherish the time they spend together through healthy and relaxing activities.

Kimberly Klessig is a master of social work intern at the Littlest Tumor Foundation in Appleton, Wisconsin. The Littlest Tumor Foundation is a nonprofit organization with a mission to find a preventive therapy and treatment for tumor growth in children. The organization is dedicated to advocating for and raising research funds for NF, empowering families, and raising awareness. Services offered for NF families include: NF Family Wellness Retreats, NF Quarterly Talking Circles, NF Educational Webinars and a variety of fundraisers. For more information, visit www.littlesttumorfoundation.com.

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

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

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!!!

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  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

Meditation Mindfulness and Diagnosis

Meditation methods have existed within every faith tradition and outside of faith traditions as a practical means to connect to inner strengths and to a bigger picture of life. As the people at the Littlest Tumor Foundation know very well through their impressive work, going through a loved one’s diagnosis, treatment, the family’s feelings of isolation and uncertainty and all manner of challenges, is a time when connection to resiliency, inner resourcefulness, and to one another is of vital importance.

I started practicing meditation in 1971 to try to enhance just those connections. The practices I learned, and now teach around the world, are based on: deepening concentration, so we don’t feel so scattered and fragmented and can be more in the moment instead of in the past or in future projections; strengthening mindfulness, so we have greater awareness and clarity about our experience; and increasing compassion towards ourselves and others, so that we have a new way of viewing ourselves and one another.

Here’s a way to begin, if you are moved to try:

Basic beginning Meditation Instruction

1) Start with just fifteen or twenty minutes, once or twice a day. While a relatively quiet place is useful for settling our minds down, there is no way to completely control our environment. Try to reach agreement with your family members or others who may disturb you while meditating that this is your time and to please wait until you are done. However, interruptions will happen. Don't let them upset you or throw you off balance.

2) Meditation begins with the belief that each of us has the capacity to understand ourselves more fully, to care more deeply both for ourselves and for others. It works to free us of habitual reactions that cause us great unhappiness, such as harsh self-judgment, and to develop greater wisdom and compassion. Meditation gives anybody who pursues it an opportunity to look within for a sense of abundance, depth and connection to life.

2) Sit in any position that is comfortable to you, chairs are fine, just try to sit upright. Your arms can be anywhere that feel natural to you. You can sit with either your eyes open or closed…you can experiment with both. If your eyes are open, instead of looking around, find a spot in front of you and rest your gaze. If at any given time you can’t do sitting practice you can lie down, or do walking meditation. If you have a physical limitation and can’t walk, e.g. you are in a wheelchair, you can do wheeling meditation. There also is no need for special paraphernalia. Feel free to change position when you need to.

3) Start by just feeling your breath as it enters and leaves your nostrils. You don’t need to adjust the breath to make it deeper or finer: simply feel it as it is and as it changes. Rest your attention lightly on these sensations. If images or sounds or emotions or other sensations in the body arise, and you can still be aware of the breath, let these other experiences flow on by -- you don’t have to follow them, or fight them.

4) Sometimes these experiences are much stronger than our awareness of the breath, and we realize perhaps only after some time that we have been distracted. Know that your mind WILL wander, just notice where it went and then gently bring it back to the breath -- every time, over and over. You will think and feel many things, both emotionally and physically, while you meditate. It is all ok. Just quietly bring yourself back to the breath.

5). It is ok if you fall asleep at first. Make sure you get enough sleep at night if you can, and avoid meditating during your lowest-energy times of the day (right after meals, etc.). Eventually, the urge to sleep will pass.

6) If you don't feel at ease meditating alone, find a meditation group that you feel comfortable with. Friends and family members may want to practice with you, which can be very supportive if everyone has the same understanding about the time frame involved.

7) Above all, have patience with and compassion for yourself. Each of us faces our own challenges in meditation, but the rewards are well worth it if we are kind to ourselves and keep on going!

This Littles Light of Mine

This Little Light of Mine

Greetings, my name is Sue Ansari. I am a registered nurse, laughter yoga teacher, raw food chef, wellness coach, holistic health counselor and a cancer survivor. Yes, it is so important when dealing with this diagnosis to do and be all things healthy – stay away from all processed foods, heap on the organic fresh fruits and veggies, drink plenty of water, exercise, but how often has your doc given you a script for laughter?

Laughter effortlessly accomplishes deep breathing, increases endorphin production, decreases pain, decreases stress and simply makes the “medicine” of the day go down so much easier. You don’t need to laugh for a reason, just throw your head back and laugh for NO reason….the benefits will be the same and you will feel better, promise!

I appreciate the Littlest Tumor Foundation asking me to contribute to their wellness blog and offer my hope and support for the work they are doing. I would like to share with you something I wrote recently for another blog that will hopefully help you understand the healing power of laughter.

“A couple of days ago, I received an email from a self-help cancer site. It was well-written, well-intended, but it seemed to be missing something. The article was about restoring joy that often in a post-cancer state can be very challenging.

It suggested that one concentrate and focus on those many positive items we all have in our lives - home, family, friends, the beauty of Nature, music, etc. - and thus, be filled with feelings of joy. At least for me, the joy I feel thinking those thoughts doesn't stick with me for long.

Luckily, I have been bitten with an infectious Indian laughter bug known as the "HohoHaha Syndrome" which can literally move you from motion to emotion. What does this mean in less scientific terms? Hmmmmmm, let me see, how can I explain?

There are many beautiful candles in my home - not only are they fragrant, but several are also embedded with a variety of gorgeous flowers. I can look at them, appreciate them, but only when I light them, do I receive the FULL benefit of their candle beings.

All of my life, I have been surrounded not only with beauty, but also with wonderful friends and family who have added so much to my life; however, my "fire" needed to be lit before my true brilliance and joy could be realized. For me, being infected with the "laughter bug" accomplished that.

Laughter has forced me to tell my body to laugh (the motion) which eventually, over a protracted period of time, fired up my inner candle, thus releasing my joy (the emotion). The strange thing about this syndrome is that it infects in a powerful, insidious way. I must tell you, during the entire incubation period, my personal life was a huge mess - there was very little to laugh about, let alone feel happy about; however, as the “laughter bug" kept biting me, I laughed....and laughed....and laughed. The more I laughed, the better I felt and the better I felt, the more I laughed! What a fantastic, positive vicious cycle!

The syndrome often leaves me feeling light-hearted, as well as, occasionally, a bit light-headed. I sleep deeper, have a much more laid-back attitude about life in general, often have an inexplicable desire to laugh out loud for absolutely NO reason and often do so while driving. I feel upbeat most of the time and rarely succumb to severe bouts of depression as was the case prior to my “infection”.

Now that my inner candle is burning brightly, “this little light of mine” allows me to see vividly the beauty all around me and it lights my way, so that I can share that joy with others. Some days I feel I would like to wrap my arms around the entire world and give it a good squeeze! Amazing what an “infection” such as this can do to a mind and body. Simply tell your body what to do and your mind will have no problem following!

O what is laughter?

What is this precious love and laughter

Budding in our Hearts?

It is the glorious sound

Of a soul waking up!

- Hafiz...

Sue Ansari RN and Certified Laughter Yoga Teacher was among the very first certified Laughter Yoga teachers in the US, training in 2005 with Dr. Madan Kataria, the founder of Laughter Yoga, in Interlaken, Switzerland. He has twice recognized her as a “Laughter Ambassador” for her outstanding contribution to the Laughter Yoga movement. A cancer survivor herself, Sue is actively engaged locally and globally in presenting cancer/wellness retreats with Laughter Yoga at its heart. Presently, she is a part of the International Laughter Yoga team, assisting Dr. Kataria with his work and writing. Locally, she is on a mission to bring more laughter to the ailing city of Detroit, as well as to the medical community at large.

Laughter Yoga is a unique concept based on the principle of “acting happiness” – tell your body what to do and your mind will follow! Through a series of simple exercises and breathing techniques, Laughter Yoga will unlock the door of your heart and soul, thus releasing your Inner Joy, allowing you to re-acquaint yourself with the carefree, light-hearted child you once were.

HYPERLINK "http://www.laughteryoga-michigan.com" www.laughteryoga-michigan.com

Americorps goes Little

Hi there! My name is Bailey and I’m a recent college graduate. Upon my graduation, I set out on an adventure to find something new to fill the free time that was to come. Lucky for me, I found the Littlest Tumor Foundation. Before applying for my position through AmeriCorps, I had never heard of the organization before but was intrigued and continue to be everyday. Like my AmeriCorps and Littlest Tumor Foundation partner, Emily, I knew nothing about Neurofibromatosis (NF). According to the National Institute of Neurological Disorders and Stroke, “The Neurofibromatoses are genetic disorders that cause tumors to grow in the nervous system.” After learning about the diagnosis, I was dumbfounded that it was a new topic for me and for those around me. How could I not know about this?!? How do I learn more? And finally, what can I do?!? These questions seem simple enough to answer right? Well, I’ve been answering them, but its been a day to day to day process. There is always something to learn and people to educate, which is no small task but I’m willing to hit the ground running.

Littlest Tumor Foundation is a remarkable organization with a bright future. The foundational building blocks of the organization include: Awareness, Wellness and Volunteerism. Not only are these outstanding goals for a foundation, but for one’s personal life as well, especially the life of a recent college grad. I look forward to my work with the Littlest Tumor Foundation and helping the organization to accomplish these goals locally, nationally and internationally. I also hope to make my own changes and incorporate Awareness, Wellness and Volunteerism into my daily lifestyle and I hope others are willing to embark on a journey of self improvement that include these goals as well. My motto is, “Be the change you hope to see in the world.” Props to Ghandi for the brilliant quote. Join me and the Littlest Tumor Foundation to be that change and make a better world for children with tumors. Lets work together to cure NF!!

Engaging in a Cure!

Wednesday June 8, 2011

Wellness is a lifestyle that has the power to heal. As a new AmeriCorps member working with the Littlest Tumor Foundation, I believe this statement is absolutely true. Before I began working for this foundation, I knew very little about Neurofibromatosis, let alone had even heard of it. I decided to dive into researching the illness and learning all I could about individuals dealing with NF. Neurofibromatosis effects 1 out of 3,000 people, which is much more common than one would think. Even though I have only been working for the Littlest Tumor for a week, I am extremely excited to embark on an incredible journey in making NF preventable. As a recent 2011 graduate from UW-Stevens Point, I graduated with a double major in Interpersonal and Organizational Communication and International Studies. My career goals are centered on improving and inspiring lives by working at the root of an aggressively passionate non-profit organization. Through the foundation’s holistic approach and dedication, families and children are helped each and every day. The Littlest Tumor Foundation is the inspirational grassroots organization I was looking for and I am thrilled to be a part of the cure this summer.

Run Kyle Run

Two years ago when I was first asked to join the “run little run” team to be honest I just laughed, I am no way a runner but when my then nine-year-old son Kyle said he would like to join me I was inspired to give my all. On May 15, 2011 Kyle and I completed our third half marathon at the Cellcom Green Bay Marathon.

Although the entire course is beautiful, yet extremely windy that day, the final mile is the most exciting and not just because you are almost to the finish line. Once you hit the final mile you are led onto Lambeau Field, yes right on the field where the Super Bowl Champions the Green Bay Packers play their home games. It is such an amazing experience to feel how large the field actually is and to hear the cheers of the crowd as you exit the tunnel to finish line.

This was our second time running the Green Bay Marathon and I must say that although we do not have many races to compare this one to it was the one that inspired me to continue running and be sure it would not be my last.

run little run

We have a running endurance team run little run and everyone can join us. I am an NF runner mom wanting to raise awareness about NF and our foundation. I am going to run as many 1/2 marathons as possible in our state of Wisconsin this year. Join me! We will add your story to ours.

Instep Icebreaker Indoor Marathon: #1

Ice Breaker: 1st half of the year. Well I will admit I was not trained for this race . It was slow going and I could tell by the peoples faces cheering they knew I was digging deep. The race is held at the Petit National Ice Center in Milwaukee. There were a few great things that stood out at this race-- One you were able to watch Olympic Speed Skaters train. It was truly amazing to watch them skate. Another great thing about this race is that it is green. You call out your number as you round the water station and someone gets your water bottle to you. Lastly, the volunteer and race staff were so encouraging on the course of many laps.

Catherine McCord of Weelicious contributes recipes Littlest Tumor Foundation

Coconut Rice

If I allowed them to, my kids could probably eat brown rice for three meals a day. It’s one of those foods the both of them have loved since they first started eating solids and, lucky for me, it’s as nutritious as it is tasty. But as easy as plain old steamed rice is to make, I wanted to try making something a little bit different that’s still simple to prepare.

I’ve used coconut milk before as an ingredient in my kids’ baby food purees like Sweet Potato Coconut Puree, but I never thought of adding it to rice until recently. The milk gives it a subtle coconut flavor and an almost creamy consistency that totally livens up the every day rice that we’re used to.

And if you find that you have some left over from dinner, you can try what I did with mine. Just add some vanilla rice milk and a touch of cinnamon and you’ve got a unique breakfast treat or a special spin on rice pudding for dessert! My guys ate it as both! When a recipe is as easy to make as this one is AND everyone is happy eating it no matter when I serve it, I realize that I better keep it stocked in the fridge at all times!

Coconut Rice (Serves 4)

1 14 oz Can Coconut Milk, unsweetened (low fat or regular)
1/4 Cup Water
1/4 Tsp Kosher Salt
1 Cup Brown Jasmine Rice

1. Place the coconut milk, water and salt in a medium size pot and bring to a boil.
2. Add the rice, stir until combine, bring back to a boil, cover and reduce to a simmer.
3. Cook for 30 minutes, turn heat off and let sit covered for 10 minutes.
4. Serve.

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Carrot, Broccoli & Cheese Orzo

A dear friend of ours who is an amazing dad to twins (and a really good cook to boot) turned me on to the idea of this recipe. He’s always looking for new and interesting recipes to feed his kids and encourages them to be balanced eaters through the variety of food he exposes them to. He uses a lot of orzo, a rice-shaped pasta, which I’ve rediscovered my love for.

As much as I love to cook, being in the kitchen for more then 30 minutes isn’t always desirable or a possibility, so it’s essential for me to come up with quick and easy recipes that I can count on to satisfy my family. For this dish, I just toss the veggies in my food processor and pulse them into tiny pieces (which cuts down on the prep time having to chop everything) and then cook all the ingredients until the orzo and veggie mixture is soft and has a rich cheesy flavor.

My friend’s kids love his version of this dish and I was so happy to see Kenya and Chloe felt the same way about mine.

Carrot, Broccoli & Cheese Orzo (serves 4)

1 Small Garlic Clove
1 Small Shallot
1 Cup Baby Carrots
1 Cup Broccoli Florets
2 Tbsp Unsalted Butter or Olive Oil
1 Cup White or Whole Wheat Orzo
1/2 Tsp Salt
1 Cup Water
1 1/2 Cups Low Sodium Chicken Broth
1/3 Cup Parmesan Cheese, grated

1. Place shallot and garlic in food processor and pulse to chop.
2. Add baby carrots and broccoli florets to the food processor and pulse, scraping down the sides half way until finely chopped.
3. In a large stock pot, heat 2 tbsp of butter or olive oil and sauté the chopped vegetables, raw orzo and salt for 4 minutes stirring continuously.
4. Add the water and broth to the pot and cook over medium heat for 10
minutes uncovered, or until the liquid starts to evaporate and the mixture thickens.
5. Add the Parmesan cheese and stir to combine.
6. Serve.

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