Tumors in Children: How One Family Thrives

I write this as I sit in an MRI room while my 8-year-old son Sami is scanned for the umpteenth time. Here we go – this is a big one. It is a follow-up scan from one just over a week ago. Enhancement. A possible brain tumor. All the other tumors are stable and I am told not to worry yet. This is not possible. But this is not where our story begins. It actually began in a doctor’s office three and a half years ago.

“Neurofibromatosis.” “Neurofibromatosis.” “Neurofibromatosis.” I make the doctor repeat this word numerous times when he informs me my son Sami will need to see a specialist to confirm the diagnosis of Neurofibromatosis (NF). In my mom panic, I blurt out, “It’s not serious, right?” The doctor replies, “It can be not serious.” Yet, just like all of you who spend time reading doctor’s faces – I know this is not good. On to the world wide web – ahhhh, confirmed – not good. Maybe, just maybe, Sami doesn’t have it? But the specialist later confirms NF at his diagnostic appointment. Our conversation basically plays out like this:

Me: What does this mean for my Sami?
Doctor: He will get tumors.
Me: Maybe he won’t.
Doctor: He will.
Me: Maybe he won’t.
Doctor: Yes, he will.
Me: Okay how many?
Doctor: Ten to thousands.

So there it is: no cure, no real treatment, no denying it, no possibility he will escape tumors. We leave the office a different family. What happens next? I imagine our story is similar to many people or families who receive a life-changing diagnosis. We fall down, get up, fall down, get up and live life. We change course.

Neurofibromatosis, in a nutshell, means your tumor suppressor does not properly function and every nerve cell in your body has the potential to become a tumor. It also presents a whole lot of other health issues. In our case, Neurofibromatosis also becomes our family’s catalyst for change. One personal change, for us, is nutrition. I jumped in all the way after reading everything I can on tumor prevention and we go raw. I will not lie: There is actual crying at the dinner table. I see three sad little faces (and a dad) all of who are trying to embrace a new raw lifestyle. So we scale back a bit and now eat primarily a plant-based diet and are conscious about our food choices.

My youngest son loves green juice, and drinks it and asks for it on a daily basis. After this MRI, though, we will take the big plunge and go to a completely plant-based diet and see if it has any impact on his tumor growth. We make the decision to eat real food, primarily plants. We start with small changes.

We also go to a summer family retreat. We spend time in the hills with monks, nuns and discover practicing meditation and compassion with other families is transformative to the soul. It helps us to be a bit more mindful in our lives. Moreover, our children shine so bright with all this compassionate attention focused on them. We become part of the NF community, which is also a change in our lives. We meet other families, doctors, researchers, organizers in the field and connect on boards. Knowledge and these types of connections are essential.

I end up becoming a fundraising mom – this is a really big change for me. Again, I jump right in head-first hoping, praying for a treatment before even one tumor shows up in our Sami. I enlist everyone; family, friends, neighbors, community. Even people at cocktail parties are recruited for big jobs. This leads to the creation of our group the Littlest Tumor Foundation and a new career for me with a lot of adventures and hard work. Sami and I even get to meet President Obama to speak about healthcare and NF.

Living MRI to MRI has lit a fire in our family and lent to our message which we share with the Littlest Tumor Foundation. Today there are few successful pediatric tumor treatments. This is unnecessary and we can do better. Simple. Just like our foundation, our goals are simple: We raise research dollars for innovative research, we promote and embrace wellness with our annual family retreat and we want the world to know about our cause.

As for our Sami, he becomes a brave soul. Tumors do indeed show up. He braves up for PET scans, MRIs, first opinions, second opinions, surgery, more MRIs and too many specialists to count. He does this all while continuing to be a truly joyful, happy child. (He does much better than his mom, in case you’re wondering).

So when the tumors do indeed show up it all becomes very real – or surreal – to this mother to be speaking to specialists and surgeons about the fast-growing mass in our child. Time to make the big grown-up decisions in life. It is not simple, as all the specialists and surgeons have differing opinions. So we arm ourselves with all possible information and make the decision to jump. We decide to operate and feel we have found truly the best surgeon on the planet to remove this tumor. Off we head to Chicago to operate, and for all of you who have been in these shoes, you know it feels so incredibly wrong. You put on a brave face and move forward. You slip in and out of the stages of grief: mad at everyone, sad, making deals with God. I finally settle on consciously focusing on envisioning him awaking from surgery. He does and asks if they got the tumor, then adding he’d like to see it so he can bring it to his science class, as he just knows his science teacher Miss Becky will want to see it.

So we survive this tumor and now watch others and continue on with our journey like so many others. Our Sami continues to keep us focused. He is essentially the heart and soul of our foundation. He is the spark that causes all these changes and many more. He is the reason we understand as we sit for hours at Children’s Hospitals: “Why not us?” One look around at the many children facing chronic and catastrophic health issues and its clear – why not us. But most importantly, he is the inspiration that makes us believe why not us be part of the NF solution.

Back to the MRI room, here I sit again, watching my sedated child in an MRI tube again, hoping he does not have a brain tumor. It all feels so crazy. So when I am asked if I have any ideas for other parents in this situation, I simply say: Fall down get up, fall down, get up, fall down, but get up. Small changes in nutrition and wellness could – and will be – huge in the long run. Lastly, join us: We are all in this together and we can channel this crazy life of tumors in our children into a solution.

Tracy Wirtanen runs the Littlest Tumor Foundation. Neurofibromatosis affects 1 in 3,000 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 learning issues to difficult to treat cancers. She invites everyone to come together around this extremely important issue to create change.

Nutrition Intuition for Kids

by Gretchen Tseng

We all have an inborn nutrition intuition, and it is up to us to decide whether to listen to it. In our current culture, unless we actively pay attention to it, our nutrition intuition slowly fades away as we are bombarded with the Standard American Diet (SAD) of processed food, fast food and the incessant advertising for both.

When children are very young, they stop eating when they are full, just as nature intended. There are times when mealtime comes around and my children inform me that they are not hungry. I try my best to allow my children to keep their intuition alive by not forcing them to eat when they are not hungry. Pushing children to eat when they are not hungry teaches them not to listen to the cues their bodies are giving them.

I have also observed this intuition diminish as children begin elementary school. All of a sudden, children become influenced by their peers and the SAD rears its ugly head as they begin to see what their friends’ parents pack them for lunch — new and exciting foods they may not have been exposed to before. When my oldest began elementary school, he quickly noticed that in today’s day and age, his mom was not the norm and could be labeled as a health nut of sorts. (When did eating whole foods and Ezekiel bread become abnormal?) Kids don’t always like to be different, so it is our job as parents to explain to our children why we eat the way we do. If I were to cave in to my children’s requests for SAD foods, their bodies would never truly be satisfied nutritionally.

This situation has led to our current epidemic of overeating, as our bodies encourage us to eat more in an attempt to ingest the needed nutrients that are not provided by a diet of processed foods. Fortifying these processed foods with vitamins and minerals has not and will not solve this issue, since it is whole food nutrition our bodies crave. Nature made fruits, vegetables, nuts, grains and legumes as perfect food sources whose nutritional components work synergistically. Fortifying a food with one or two vitamins simply cannot have the same satiating result as eating whole foods does.

In our current food climate, helping children maintain their natural nutrition intuition is truly a constant battle. It is my hope that the healthy whole foods being fed to our children will help them keep their nutrition intuition by reminding them what “real” food tastes like. Here are some tips you can use to help you and your child:

Tip #1
This bears repeating: avoid forcing your children to eat when they are not hungry.

Tip #2
Start the day off by giving your children freshly squeezed fruit and vegetable juice, which will satiate them naturally by providing their bodies with much-needed nutrients.

Tip #3
Avoid the empty calories of processed foods. If you must feed your children foods like crackers and bread, ensure that they are 100% whole grain.

Tip #4
Make sure your children are hydrated so they do not mistake thirst for hunger. Water is the best hydrator. If your children balk at water, lightly flavor it with some lemon and stevia, or squeeze the juice of an orange into the water.

Tip #5
Keep a tray of high-nutrient snacks on the bottom shelf of your fridge within your children’s reach (e.g., cut fruit and veggies, hummus or bean dip, nuts and seeds). Tell your children they may go to the fridge and snack from this tray whenever they are hungry.

As a parent, I try my best to keep my children’s nutrition intuition intact and to teach them the merits of eating whole foods that will truly satisfy their bodies’ needs. I do notice that my children understand nutrition much more than the average child. Both can easily explain the merits of living a dairy-free life and why dairy actually weakens their bones. This has taught me that even when I do not think my children are listening to me, they are.

We need to shift the way people approach meals and the consumption of food as a whole in this country. Many of us are working hard to change the way our country approaches meals, and I believe the tide is shifting as more and more people are ready and willing to hear how to improve their diets. I have never shied away from being different or standing up for what I believe, and certainly will not do so when it comes to the nutrition of those most precious to me.

Gretchen Tseng is a Nutrition Specialist with certification in plant-based nutrition. At a young age, she experienced a series of illnesses, which propelled her to seek nutrition-based solutions. Gretchen is passionate about sharing the health benefits of this lifestyle.

Photo credit: Bruce Tuten

How Meditation Changes Your Life

“The ego is a dysfunctional relationship to the now.” Eckhart Tolle

I did not start meditating in earnest until my daughter Jasmine was born. Twelve years before I had bought a book on Zen meditation and began a seated practice on my own. The results were dramatic. A few weeks after I started, a friend of mine asked, “Rolf, what happened to your car? It’s clean!” I smiled and said, “Meditation.”

I have always loved meditation. When I take the time to sit quietly and do nothing, I feel as though the world reveals itself to me in its true beauty. This has always been the case with me; I love being silent and still. I love the space people create around the practice of meditation and the application of spiritual principles. It feels to me like the phrase from The Lord’s Prayer, “On earth as it is in heaven.” I loved meditation, but I lacked a compelling reason to do it instead of going for a jog or to the gym. Jasmine gave me a reason.

In the 39 years before Jasmine was born, if a relationship did not work out, it felt to me as if both parties would be OK. We were all big boys and girls, so to speak. Jasmine presented me with the first relationship I had ever had that simply did not have failure as an option. Not only was my relationship with Jasmine without an exit clause, its failure, should it occur, would be my responsibility entirely. Jasmine was six pounds and eight ounces of blamelessness. This would be mine to make or break. Parenting would require that I inhabit the space between me and another human being, with skills I had not yet even dreamed of.

There was a get-ready phase in which I just felt the pain of inadequacy as a parent and a husband. Initially, I could not figure out how this could be. I felt as though I had prepared to be a good parent my whole life. In this phase, the carefully designed life I had lead since getting sober competed with the messy, chaotic, sleepless life of my family. On weekends, I wanted to practice yoga poses for a couple of hours in the morning and take a nap in the afternoon. My wife wanted a break from her 18-hour days, a little of my attention and for us to tend to countless errands. It was hectic and tiresome and had no end in sight. My professional life was not getting easier and my body was not getting younger. My saving grace was that I had anticipated the unanticipated.

I had chosen to be a full-time yoga teacher years before, knowing that consistency in practice does not happen often, and when it does, special care has been taken. I chose teaching yoga because I knew it would keep spiritual practice alive and relevant in my life. At the end of my proverbial rope, I acted like a yogi and went on retreat. Intense meditation practice was exactly what I needed.

Ramana Maharishi was asked, “What causes human suffering?” His answer was, “The habits of the mind.” With the cultivation of inner space through meditation, I was able to see how my life had outgrown the habits of my mind.

Meditation has a unique role in the unraveling of human suffering. Most of the time, we are so caught up in our suffering that the cause of it remains entirely obscure. We think our suffering is caused by everything and anything, except the workings of our own mind. Humanity has a genius for getting it wrong. A few days of silence and we begin to see the pattern our thinking weaves over reality. This pattern inhabits the space between us and everything and everybody else. This pattern drifts about within us, obscuring our very relationship to ourselves.

As I began to see my thinking as a habitual reaction rather than the truth of the way things were or the truth of the way I am, I began to be free to make new choices. Noah Levine, the meditation teacher, taught me to “Reflect on my mind rather than to react from it.” What a freedom! Einstein called the habit-bound mind a “sort of prison.” My experience of the effect of meditation has been a new sort of freedom: the freedom to choose to be the person I wish to be, unencumbered by the person I have been.

Photo credit: daz smith

The Yoga of Parenting

When I’m asked how yoga has impacted my parenting, I parse it down to one point, which every other type of work on myself has corroborated for the past 13 years. In every moment, I magnetize my own state. Translated: However I am behaving will be reflected in everyone around me, especially my kid.

There are many simple examples of this popular topic. If you’re happy, people smile at you. If you don’t trust yourself, nobody trusts you. If you’re paying attention, people around you pay attention. Every day, whatever apocalypse is happening inside of you will be magnified again and again in the people near you, until you handle it. Whatever you’re feeling, see how it’s returned to you.

Parenting is no exception. As a parent, we magnetize nothing but our own behavior in that of our kids. If I point my finger and yell, at his next play date my 4-year-old son points his finger and screams at another child when he’s frustrated. He would never know how to do that without my example, and he’ll never know how to be masterful without my example either. And when I manage to listen attentively and sit with him so he can comfortably invite me into his mind and his realm, I get attention, kisses, hugs and hilarity returned to me. So in every moment as a parent, we magnetize our own behavior in our kids. You get it. How does yoga help?

When I’m paying attention, yoga offers spaciousness to my experience of parenting. Most of the day, I can feel it close by, but I can’t touch it. How ridiculous is it that here I am teaching specifically about spaciousness for more than 13 years and I cannot seem to get past my own animal instinct to doubt and rush and be perfect at the expense of my son’s stability and confidence? So this is what I want to share here. Parents, use your yoga to cultivate your own brand of spaciousness. What does it mean to be spacious (hold space in your own body) and how can we do this through yoga?

In the poses, I want to respond to my body’s resistance with patience (the spaciousness I personally need) rather than reacting with self-doubt. This allows me to be more patient with myself, and learn how to hold that patience for my kid rather than worrying about what else I could or should be doing. And then I want to teach that process of holding space, which is really just a matter of learning to be expansive and more kind with myself, so the folks I’m teaching will be drawn to do that for themselves and their families.

The other day, I had a discussion with a friend about the Handel process, a life-coaching program wherein we’ve both learned how to design consequences for our angry outbursts around our kids. While the yoga practice has opened so much for me, the Handel Group’s aim-oriented, personalized action plans were the missing piece. Both my friend and I came from families where rage was present, and coaching helps us define the behaviors, own them and evolve them. What we came to in the conversation was super simple. Your kid, at any moment, is just showing you your own face. That statement stings, and it should. Make more space in yourself and your kid will receive it and reflect it back to you.

Paradoxically, this spaciousness is cumulative. When you cease doubting yourself and begin to hold that space for yourself, you are generating an indestructible quality of freedom within yourself that nobody can take from you. “Asanas (postures) catapult us out of our habitual minds and into the vast space within” – Christina Sell, the upcoming “My Body Is a Temple.” You’re practicing to prepare yourself for the unexpected, so that no matter what happens, you’re still the one who’s able to stand still and quietly, confidently, hold that space for yourself and for anyone nearby. You’ll catch glimpses of what it feels like to hold that space for your child, and those glimpses will become vantage points, places within yourself where you can stand and offer stability in your family, no matter what the context.

“When the inner state of the adult changes, so does the context for what the child learns … The state of the adult-child relationship is infinitely more important than the information or skills we adults so urgently wish to convey or teach. States are primary. They impact learning, performance, and wellness, at any age.” – from “Magical Parent Magical Child: The Art of Joyful Parenting,” by Michael Mendizza and Joseph Chilton Pearce.

And from “The Tao of Motherhood,” by Vimala McClure: “You can manage your children with strength. Mastering your own life requires true power.”

Photo credit: StephenandMelanie

The Quick and Easy Way I Helped My Kid Cut Dairy

Here is the story of why and how I removed dairy products from my now 7-year-old son’s diet, and one great suggestion on how to make healthy substitutions work in your life and in the lives of your favorite peeps.

My son’s name is Riley, but this story starts with me … no shock there!

In 2007, I removed all dairy products from my personal food intake. Prior to this action, I drank a little milk here and there, and I loved cheese. Abstaining from dairy food was part of my clean eating journey following my cancer diagnosis – not that someone told me to remove it, but as I gravitated towards vegetarianism and then veganism, it naturally went by the wayside.

To my surprise, my chronic sinus and allergy issues also went by the wayside. At first, I wasn’t sure why this phenomenon occurred. Before this, I was on over-the-counter medications and prescription medications daily, and suffered excruciating headaches several days a week. Every week. And it was worse in allergy season. I had also noticed over his short life, that my then 4-year-old son had seasonal allergy issues that mirrored mine. Great.

So, no dairy for me. Time moves on and I start realizing: Hey, no more headaches (I was a bit preoccupied with life and other health issues, so it was not an immediate ah-ha moment). No more sinus issues. Wow. In 2009, I started thinking, hmmm, Riley continues to have seasonal issues with allergies and sinuses, and what he still calls, “head-ecks.” So after much thought on the issue, I declared no more milk for Riley.

Big step.

Like a good mommy, I knew there needed to be a substitute for Riley, so I started making almond milk. In Riley’s mind, not a good thing. In fact, he cried, he whined, he hated it. He would eventually drink it due to the threats of no cartoons. Honestly, he didn’t mind it so much, but he would cry to me with the most scrunched up and whining face saying, “but this isn’t milk, Mommy.”

He was right. It wasn’t milk.

In his short life, he had known breast milk and he had known cow’s milk. Almond milk was by no comparison milk. Now, I make beautifully aromatic and sweet almond milk. But it was in no way milk in his world. How could I be so shortsighted?

Time for a strategy change. Quick mommy, think fast on your feet! And you know what, I did just that.

So I sat down and got eye level with my son, and said, “You know what, Riley, you are absolutely right. This isn’t milk, and I am so sorry for calling it that. Milk comes from mammals, and this sweet drink is made from almonds, so how in the world could it be milk?” He looked at me with big eyes almost doubting my blunt honesty.

I continued, “What would you like to call this drink? It is so white, kind of like snow, don’t you think? And it is not like milk at all, it is more like water, isn’t it?”

He nodded.

“What do you think we should call it then? Snow milk, snow water? How about snowflake water?” I asked with enthusiasm. His eyes lit up, and he smiled. “Yes, I like that, Mommy. It is kinda like water.”

And so it was.

It was amazing that just renaming the drink and not trying to pass it off as an exact substitute totally changed my son’s acceptance of the new drink. It was no longer a negative thing. He was also very pleased to be part of the renaming. It was as if it gave him some ownership.

Consider giving this exercise a try with yourself and with your loved ones who are rejecting some of your lifestyle changes. Don’t try to pass everything off as a one-for-one substitute. Make up new, fun names for foods, drinks or even routines so it is not viewed as a negative in anyone’s mind. Be honest, but simply change the focus!

Christmas Eve came shortly after our renaming powwow and Riley proudly put out some sweet snowflake water for Santa along with some other vegan (raw) goodies. The snowflake water was all gone the next morning – yum! Santa and his reindeer will be happy to know that they will be getting more of that tasty goodness this year too.

Ho-ho-ho!

Tina Pruitt is a healthy living expert and speaker, an International Raw and Living Foods Coach, and a two-time breast cancer survivor. She is living and sharing her passion through her soon-to-launch online healthy living coaching business.

Photo Credit: idovermani