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.http://crazysexylife.com/2011/tumors-in-children/
Neurofibromatosis and Green Juice
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.
3 kale stalks
1/4 pineapple (not peeled)
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, Jxhttp://millburn.patch.com/blog_posts/neurofibromatosis-and-green-juice
A growing number of nonprofit groups compete for funds in the Fox Valley
Nerve cells in Sami Wirtanen-Debenedet's body are under attack. The rare genetic disorder neurofibromatosis means tumors can develop in every part of his nervous system.
The mutation that affects 1 in every 3,000 births inspired the 8-year-old boy's Appleton family to begin a battle 3.5 years ago not only for Sami's health, but against the disease itself.
Sami's family began dabbling in fundraising and before long had $50,000 in the bank, held a fundraiser in Los Angeles with comedian Zach Galifianakis and organized health retreats in Door County.
"We decided last fall to put the gears in motion to officially start a foundation and by spring had our (tax-exempt) status," said Tracy Wirtanen, Sami's mother. "We're raising money for pediatric research, do the retreat focusing on wellness and raise awareness."
The Littlest Tumor Foundation, headed by Wirtanen, joined about 700 new Fox Valley nonprofit organizations in just the past five years.
Charitable and private foundations are booming in the region, outpacing both the state and national growth rates, according to the new Leading Indicators for Excellence Study.
Despite the swell, total revenue associated with all the nonprofits in the area has not grown at the same rate, leaving hundreds of organizations harvesting from the same ground for fundraising dollars.
Fighting for dollars
Organizations are constantly on the fundraising trail, having to become creative to keep revenue streams flowing from the community many say has a deep philanthropic vein.
"A perfect example is everyone does a golf outing now," said Jay Stephany, past president of the Appleton Fox Cities Kiwanis Club. "There was a business we called one year that said 'if you're doing a golf outing, we can't help you' because they get hit up by eight different people each summer. We're always looking toward that next thing that nobody has done yet."
Current Kiwanis president Chuck Wagner said the growth of nonprofits is due to smaller groups of people seeing the need for a niche, citing the Miracle League, a new Fox Valley baseball league catering to children with physical and mental disabilities.
"I wouldn't say it's daunting to see all these new groups. It means there are more people trying to help out," he said. Both Stephany and Wagner point out that nonprofit service groups like Kiwanis are more about "sweat equity" than writing checks.
Charitable giving in Outagamie, Calumet and Winnebago counties has not kept pace with the rapid growth of nonprofits, putting pressure on groups to stay financially viable, said Lora Warner, the University of Wisconsin-Green Bay researcher who managed the LIFE Study.
"It makes it difficult, especially for the smaller nonprofits, whereas the larger and nationally affiliated groups have put themselves in the community permanently with marketing and branding," Warner said. "It's important to look at the needs and coordinate funding so we don't leave out a vital part of the community."
A 2010 survey performed by the Community Foundation for the Fox Valley Region found that 76 percent of all local nonprofits feel vulnerable in some way, with 18 percent experiencing chronic financial problems.
Curt Detjen, president and chief executive officer for the community foundation that distributes about $13 million each year, said he suspects the 700 new organizations represent a mix of charities, service and member organizations.
"There's no question that the nonprofit sector needs to be very prudent in the way that it spends its resources," Detjen said. "Granting organizations like ours invest a lot of time in talking with nonprofit leaders to carefully evaluate competing proposals for funding. Everyone needs to work smarter to ensure the dollars are spent on the nonprofit sector get the greatest results."
While state and county budgets are slashed, Detjen said nonprofits step in to fill gaps in services. Now, however, politicians are pushing for cuts to government support for nonprofits, suggesting a wave of financial hardship on the horizon.
"Everything you read and hear out of Washington and Madison and even within our local governmental units is an emphasis on shrinking the size of government and the programs they're supporting," Detjen said.
Ways to survive
Those fewer dollars combined with the throng of new nonprofits could ultimately lead to a squeezing out effect, said John Mielke, a board member for the Mielke Family Foundation, a major northeastern Wisconsin nonprofit that grant provides grants to numerous educational causes.
"On one hand (more nonprofits) are good for the community, but on the other hand there are a lot of them. Can they all survive? If they're good they'll survive if not they won't make it," Mielke said, "It's encouraging that people want to improve the community through nonprofit organization É taking care of populations that need extra help or enrichment."
Perhaps tempering the surge of new nonprofits was an IRS effort this summer to cull inactive organizations from agency lists. More than 5,600 Wisconsin nonprofits among 275,000 nationwide were stripped of their tax-exempt status in June for not filing returns for three consecutive years.
Similarly, growth lists can be deceiving because they include offshoot organizations within umbrella groups, and also failed startups.
"There is a lot of churning and a lot of births and deaths especially with small organizations," said Tom Pollak, program director for the Washington-based National Center for Charitable Statistics. "There are a lot of little organizations getting started that run out of that first grant and can't develop any sustainable growth."
John Rathman, deputy director for the Outagamie County Department of Health and Human Services, said the nonprofits have been vital in recent years filling gaps in county services.
"The issues we face in Health and Human Services are becoming overwhelming. It's more than what government can do alone," Rathman said. "With the cuts to W-2 payments and potential for cuts to Medicaid and other health coverage, the need will only increase."
Rathman pointed to dental care in the region as an example to where nonprofits fill a vital need.
The Tri-County Community Dental Clinic, a nonprofit group of 85 volunteer dentists, opened in 2003, when 21,000 people in the three counties fell into low-income categories that qualified for care. Today, that number stands at around 85,000, said Robert Glass, executive director of the clinic.
"The new Fox Cities Community Health Center, has come online and expanded to 15 chairs in addition to our 10," he said. "Even with that we have more people than we know what to do with."
Give Me 10
Tracy Wirtanen, making a difference
Posted on July 5, 2010 by Laura
On our 17-hour journey Friday (after one canceled flight and a rebook on a flight 8 hours later), I caught up on my magazines. I read one of those great magazine profiles (this one in “Women’s Running”) that inspires you and makes you think, “I could do something like that, too!” The story was about Tracy Wirtanen, a woman whose son was recently diagnosed with Neurofibromatosis, a tumor disease that impacts one in every 3,000 children. In the short time that has passed since the diagnosis, Tracy has run the Boston Marathon and Race Across America to raise awareness and funds for research. She also began The Littlest Tumor Foundation, to help families dealing with the disease, and she organizes annual races and started a running team, too — all for the cause. It’s hard to wrap this story up with something that doesn’t sound trite — but it does shows what focused passion can get you.
If you have something you’ve been mulling over and wondering how you could ever get from point A to point B with it, think about spending just 10 minutes today thinking about it, researching it, jotting down a note or two, etc.
My podcast interview last week with Christine Louise Hohlbaum, author of “The Power of Slow”, is up on her website now under the July 2nd post. If you take time to listen to it, make sure to get comfortable — seems I need about 10 minutes just to answer a single question! Better make my 10-minute goals for next month to be more succinct!
24-hour walk promotes nonprofit Littlest Tumor Foundation, fundraising efforts to find cure for neurofibromatosis
BY KARA PATTERSON • POST-CRESCENT STAFF WRITER • MAY 9, 2010
APPLETON — Appleton mom Tracy Wirtanen takes seriously the easier-said-than-done call to action, "If you don't like it, do something about it."
The tagline of the Littlest Tumor Foundation, the new nonprofit Wirtanen co-founded last summer, is "Sam i am, tumors i do not like them."
The inspiration behind the nonprofit and its tagline is Wirtanen's 7-year-old son, Sami Wirtanen-DeBenedet, who lives with neurofibromatosis (NF), a presently incurable disorder that causes tumors to grow anywhere in the body.
"It's becoming a part of the solution," Wirtanen said Saturday at the close of the nonprofit's 24-hour run/ walk awareness event for NF along College Avenue, as she watched Sami, an energetic first-grader in pajamas, play with other children at the downtown Appleton event's staging area, Copper Rock Coffee Co.
Sami visits the doctor Monday to see whether a benign abdominal tumor that surgeons had removed in January has grown back. Right now he's doing well, Wirtanen said, but that's not always the case with children who live with NF.
The disorder can cause complications not limited to cardiovascular problems, cancer, bone defects, amputations and chronic pain. In his short lifetime Sami has experienced stunted physical growth, high cholesterol and other difficulties due to NF.
This month, which is NF Month, also is special for the Littlest Tumor Foundation because of two key events. From 11 a.m. Friday to 11 a.m. Saturday, about 14 supporters took their turns walking or running up and down the Avenue — some in blue wigs and "Thing One" or "Thing Two" shirts in homage to the nonprofit's Dr. Seuss-style tagline — to raise awareness about a May 29 run/walk fundraiser.
The upcoming fundraiser's registration fees and pledges will help the nonprofit work toward its main goals of supporting research that aims to prevent tumor growth in children, and providing wellness scholarships to Wisconsin families living with NF.
The Broeniman family of Appleton received the nonprofit's first scholarship. Emma Broeniman, 8, helped stamp May 29 run/walk leaflets with information Saturday at Copper Rock while her parents, Amie and Jim, donned blue wigs and walked the Avenue, leaflets in hand.
"What I can do to help, I certainly will," said Jim Broeniman after his walk. "I can't control the disorder, but I suppose I can control trying to find a cure."
Nonprofit co-founder Jolene Morgan, of Sherwood, said an adaptive bicycle is on order for Emma, who undergoes chemotherapy to treat NF. The adaptive bicycle is necessary because of Emma's NF-related physical limitations.
"We want to be able to get (children's) minds off of what they have been through," Morgan said. "For Emma, she's always wanted to ride a bike."
Wirtanen said scholarships also include money for expenses related to NF treatment, such as gas mileage. Many families travel frequently and out of town for appointments, she said.
Soon the nonprofit plans to award its second scholarship to another Fox Valley family.
Kara Patterson: 920-993-1000, ext. 215, or email@example.com
Jolene Morgan (left) of Sherwood and Michelle Siegfried of Kaukauna walk Friday along College Avenue in downtown Appleton during the Littlest Tumor Foundation's 24-hour walk to raise awareness for the nonprofit and its support of research into neurofibromatosis, an incurable disorder that causes tumors to grow anywhere in the body. (Post-Crescent photo by Dan Powers)
The Littlest Tumor Foundation's May 29 run/walk fundraiser starts at 8:30 a.m. at Plamann Park, 1375 E. Broadway Drive, Grand Chute. Same-day registration begins at 7 a.m. The event opens with ¼- and ½-mile children's fun runs, and concludes with the 2.5- and 5-mile run/walk. Registration costs $20 for ages 13 and up, $10 for children ages 3-12 or $45 per family. Children under age 2 are free. Collecting pledges is not required but assists the nonprofit in meeting its fundraising goals. Participants enter into a prize drawing for each $100 they collect in pledges. Participants receive T-shirts and goodie bags. The team (maximum 15 people per team) that collects the most funds receives the Sami Cup. For more information and to register, go online at www.littlesttumorfoundation.com or call 920-475-6599.
LITTLEST TUMOR FOUNDATION
The Littlest Tumor Foundation, a new Fox Valley-based nonprofit, is dedicated to promoting awareness about neurofibromatosis, a disorder that causes tumors to grow anywhere in the body and can involve life-threatening health complications. The nonprofit raises funds to support research trials and studies that aim to prevent tumor growth in children. It also provides wellness scholarships to Wisconsin families dealing with neurofibromatosis. Read more about the nonprofit and upcoming events online at www.littlesttumorfoundation.com and littlesttumor.blogspot.com.
Cheryl Anderson column: Tumor group, business team up for wellness
When it comes to her son, Sami Wirtanen-DeBenedet — and other children with neurofibromatosis — Tracy Wirtanen never lacks for ideas.
Sami, 8, was diagnosed at age 3½ with neurofibromatosis, which affects one in 3,000 children. The disease will cause tumors to grow on nerves anywhere on or in the body including the brain and spine and also can bring on serious skeletal abnormalities, endocrine issues, possible amputation and significant learning disorders. There is no cure. Although usually benign, the tumors can turn malignant. Treatment only relieves the symptoms.
From holding a moonlight ski and snowshoe benefit for the Children's Tumor Foundation to participating in Race Across America to co-founding in 2009 the Littlest Tumor Foundation, Wirtanen and Sami's father, Brent DeBenedet, are trying to be part of the solution rather than sitting back and hoping for medical advances,
They've now joined forces with Just Act Natural, a Green America-approved business in downtown Appleton, for a wellness drive, which runs through mid-August.
In the past, Wirtanen has received donations from Just Act Natural owners J.C. and Dianne Paustian, and they've always talked about forming a partnership based on their beliefs that chemicals should not be a part of a healthy child's environment.
"We have similar missions of wellness and children," Wirtanen said.
Green product items can be purchased at Just Act Natural, which is celebrating its second anniversary, or brought to the business as part of the drive. Items collected will be used in chemotherapy packages for Littlest Tumor Foundation kids and as part of the foundation's Wellness Retreat in August in Door County.
"But there's a lot of green washing out there so we want it to be a true green product," J.C. Paustian said. "We've got that seal of approval."
Dianne Paustian said she got more serious about the green cause when she was pregnant with her daughter, Kendra, now 5. The Paustians also have a son, J.J., 2.
"When I learned differently I changed everything," Dianne said.
While there are no guarantees a person who lives an organic lifestyle won't face a life-threatening condition, why not do what you can, she said.
As for Sami, "he's a happy child," Wirtanen said. He has had a major surgery to remove a fast-growing mass from his abdominal plank and has more tumors now growing in his neck.
"We just have to wait and see. … We do what we can," Wirtanen said.
For more information, go to www.littlesttumorfoundation.com or call 920-475-6599.
Cheryl Anderson: 920-993-1000, ext. 249, or firstname.lastname@example.org://www.postcrescent.com/article/20110423/APC04/104230338/Cheryl-Anderson-column-Tumor-group-business-team-up-wellness?odyssey=mod%7Cnewswell%7Ctext%7CFRONTPAGE%7C
Senator Feingold Statement on President Obama's Meeting with a Wisconsinite to Discuss the Health Reform Bill of Rights
Appleton mom Tracy Wirtanen helps President Barack Obama promote health care reforms
Tracy Wirtanen, making a difference
PHOTO: Zach Galifianakis @ The Littlest Tumor Foundation Benefit
Cheryl Anderson column: Tumor group, business team up for wellness
Kristen's Raw Blog