Welcome to "SupportJoni.com"

This is the information center of the fundraising efforts for Joni VanDusartz.  Joni was diagnosed with Inflammatory Breast Cancer in May 2006, and has been denied insurance coverage.

Please click here to view this very important VIDEO regarding Inflammatory Breast Cancer

About Joni

Joni lives in Hammond with her husband, Charlie and their three daughters. 

Joni and Charlie are co-owners and operators of their family business. Joni is involved in all facets of the company including cabinet making, machine operating, managing employees in the shop, customer service and sales, financial and business management, and more.

Joni is also an active and involved mother teaching her daughters horseback riding, coaching them in youth sports, leading them in Girl Scouts, and volunteering at their schools.

Joni is also active in many community organizations and events, including her church.

Please join us in supporting Joni and her family as they go through these difficult challenges. Your support is needed due to extensive medical costs.

#1. Joni VanDusartz

By Michele DeLong Lyksett 

When Joni VanDusartz of Hammond went to the doctor last April for an upper respiratory infection, she almost offhandedly asked her doctor to take a look at a quarter-sized red mark on her left breast. She wasn’t worried about it – “it wasn’t bumpy or itchy,” she said – but, as long as she was there, she asked about it. The doctor prescribed a cream. 

VanDusartz had no idea her life was about to dramatically change. 

“I don’t really go to the doctor much, just once a year for my annual exam,” VanDusartz said. In fact, she’d had that exam in August when she’d gotten a clean bill of health. So when her breast started bothering her a week-and-a-half after her April appointment, she figured she was having a reaction to the cream. Since her regular physician wasn’t working that day, she saw someone different. 

“She did a breast exam and then asked me when was the last time I had a mammogram,” VanDusartz said. “I said ‘I’m only 39! I’ve never had one.’” 

She did then. 

“She got the results back and said ‘There’s definitely something suspicious here.”

VanDusartz was referred to the Virginia Piper Cancer Institute in Minneapolis for a needle biopsy. 

The last thing on her mind was insurance coverage. Although the VanDusartzes, who are self-employed as the owners and operators of VanDusartz Quality Woodworking, were planning to switch insurance companies, they never thought they were without coverage.

VanDusartz’s needle biopsy was performed May 8. The doctor she saw said she would get a phone call the next day with the results. When she hadn’t heard anything by 5 p.m., VanDusartz made some calls herself. Her referring physician wanted her to come in in person, but VanDusartz said “I just want to know what it says.” 

Within a half hour of VanDusartz calling the cancer institute, the person who performed the needle biopsy called VanDusartz from home and gave her the news: she had a mass approximately 2cmx4cmx10cm. Ductal cancer in situ – that is, cancer contained in one spot. She also had invasive ductal cancer – cancer that had spread, but they didn’t know yet where. 

Several tests and several days later, VanDusartz learned she actually had inflammatory breast cancer (IBC) – a rare form of cancer that strikes about 2 out of every 100 women with breast cancer. Unlike other forms of breast cancer, IBC can’t be “cut out.” In fact, VanDusartz said, cutting will only cause the disease to spread. 

On May 17, about three weeks after going to the clinic for a respiratory infection, VanDusartz began aggressive chemotherapy. As is the case for everyone, she lost her hair – everywhere. But she didn’t lose her sense of humor. 

“When I lost my eyebrows, people would say ‘Just draw them on,’” she said. “I had done that. I had gone to the grocery store and done some errands. When I got home I walked past a mirror and noticed I only had one. I decided then ‘Eyebrows are not for me.’”

The hair on her head disappeared with the help of her family: husband Charlie and daughters Roxy, 13; Casey, 12 and Xena, 9. 

“I would say that other than the initial shock of finding out you have cancer, losing your hair is a horrible thing,” Mom VanDusartz said. “Charlie and the girls shaved my hair off. We went somewhere for a graduation. We came home and went outside and shaved my hair off.” 

“The coolest do-rag I got was frogs on motorcycles.”

Joni talking about head coverings after losing her hair

Following the 12 weeks of aggressive “AC” chemotherapy, VanDusartz underwent another 16 weeks of herceptin therapy before finally having a double mastectomy on Nov. 21. 

While having breast cancer is an awful experience, VanDusartz said she is grateful for her treatment facility and all the people she encountered there. 

“It seems like once you enter a cancer-related place everything slows way, way down,” said the mother of three who is constantly on the go. “They take time. They sit back and have all the time in the world. Whatever you need they give. Even receptionists walk you from one place to the next. Everything is much more family. There’s usually flowers around. There’s things that make you, as a woman, feel more comfortable. More taken care of.” 

During chemo treatments, patients sit in big pink recliners and are covered by warmed blankets. 

VanDusartz said she felt extreme bone pain after her first few times, and began receiving steroids on Thursdays to offset the effects. 

“Friday was referred to as steroid Friday. I could do anything. I got up at four and went all day,” she said. “On Saturday, I couldn’t do anything. I watched the same TV channel because I didn’t have the energy to push the clicker.” 

She regained some strength – and some hair – during the herceptin treatment. Then came the surgery. 

After spending just a day in the hospital, VanDusartz returned home with drain tubes and medication. 

The next week, she started back as coach for the sixth grade girls Central Basketball Association team. 

“I just wanted to move again; to be active again. (The activity) continually made that thing drain. I thought it would be a good thing,” she said. “They told me it was too much. I needed to slow down. It didn’t make sense to me. I took a couple days where I did a lot more reading, just hanging out and watched TV.” 

Because of the nature of inflammatory breast cancer, VanDusartz couldn’t have reconstruction right away. She said it allows surgeons to take more skin from breast area because they didn’t need to leave anything to try to stretch and pull. 

“I was amazed to find out that your whole chest is numb from armpit to armpit,” she said. “I don’t know if I’ll ever have reconstructive surgery.” 

While VanDusartz recovers from her surgery, she said she has good days and bad days – both physically and mentally.

She hasn’t yet returned to volunteering for fifth grade teachers at the middle school – something she did during her herceptin treatments – and she may not for awhile since she began radiation treatments on Tuesday. 

“It’s not like something that lasts for a month or two months. This has been kind of the never-ending story in a way,” VanDusartz said. “I get the times where I want to crawl in the closet. There’s a lot more support outside the closet, though. I’ve thought about it a lot.”

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

#2. Joni VanDusartz and the Community

By Michele DeLong Lyksett 

Most everyone who knows Joni VanDusartz says she’s a giver and a doer.

She’s been a Girl Scout leader since her daughter Roxy, now an eighth grader, was in kindergarten. She began coaching the same daughter’s Central Basketball Association team two years ago and is now the coach for sixth grader Casey’s team. She has volunteered both at the St. Croix Central Elementary School in Roberts, where she still has daughter Xena in fourth grade, as well as the middle school, where the other two go. She is active in her church, St. Patrick’s in Erin Prairie. And the list could continue on…

In May, VanDusartz found out she had inflammatory breast cancer, a rare form of the disease. Although there is never anything easy about “the c word,” IBC presents unique problems since immediate surgery could cause it to spread.

 As if that weren’t bad enough, the VanDusartzes’ insurance company denied her medical coverage. 

While her friends rallied behind her from the beginning, the insurance difficulties sent them into further action. 

“Joni is always the first to step in and offer help to others in need,” said friend Carol Morgen of Roberts, who has known VanDusartz for about eight years, first through Girl Scouts now as “almost a sister.” “She has developed many, many friendships throughout her life. When we learned about her medical insurance problems, several of us decided to form a committee to organize a benefit. It’s exactly what Joni would have done if the situation were reversed.” 

And organize they did – not just “a” benefit, but several events, as well as a website: www.supportjoni.com. According to the website, the committee includes 15 people met in different situations. 

“The spirit of volunteerism that they show and pass on to their daughters and the girls on their teams is an invaluable trait in a time when so many say ‘I have too much to do, I can’t help.’”

Terri Green, Central Basketball Association co-chair

“So many wanted to help that somebody brought up having a committee to do it,” VanDusartz said. “We have a group of 15-17 people that all have a piece of a puzzle somehow. They have shirts; they’ve created a website – it’s amazing things a group of people can do.” 

Steve and Julie Biedler met Joni and her husband Charlie in the early 90s because they both own cabinet shops. They soon realized they had other things in common and became good friends. 

“It seems nobody even had to bring it up, we all just knew that we would come together as their friends, most of us meeting for the first time for this common cause, to get them through this so they can concentrate on recovery,” Julie said. “I don’t think any of us expected it to grow as it has, but WOW, look at us, we are doing this and it WILL make a difference.” 

The first events held were in early October: an ALIVE dinner (ALIVE is a local teachers group that helps families in need) and a meat raffle held at the Sidetrack Saloon in Roberts. VanDusartz said she had never even HEARD of a meat raffle before, but the event turned out to be a lot of fun and very successful. 

Next up was a gun raffle, with the drawing held on Halloween, and just two weeks ago the Central Basketball Association hosted the league tournament for eighth grade boys and donated the proceeds to VanDusartz. Local volunteers staffed the kitchen and the tables, others donated food or cash and some local refs even gave their day’s pay to the family. 

A “Mid-Winter Extravaganza” is planned for Saturday, Feb. 3 at Rolling Ridges Girl Scout Camp. The event will feature many activities for all ages (see flyer on Page 2 for details). 

The night will culminate with a kitchen raffle drawing – the grand prize of which is a kitchen make-over valued at $25,000. 

It’s not just the fundraising and the committee that have helped her, VanDusartz said, there are many others in the community who have supported her in different ways.

One friend organized a group to bring the family dinner at least twice a week. She has told VanDusartz she has them lined up through April. 

Many have sent letters, cards and emails with caring and encouraging words. VanDusartz said it was seven weeks before there was a day she didn’t receive something in the mail.

And others have offered their words…or just their normalcy.

“Roxy was playing softball and Charlie was her coach when I first found out, and so many people called and volunteered to take over coaching. Charlie very much wanted to keep things status quo,” Joni said. “I still went to the games. I didn’t want to be the closet cancer person. They didn’t look at me and talk about me. They looked at me and talked to me. 

“I have never felt so loved. I don’t know how else to say it. It’s amazing that something so horrible has happened and you can feel so good about something else.”

“Just the other day, I saw Joni donating toys for the communities, “Toys for Tots” program… The most interesting thing is, they would never, in a million years ask for your help, they would ask that you help someone more deserving.  I think that makes them the most deserving of all!”

Elaine Starck, in a letter to the WCCO Neighbors Helping Neighbors program

The experience has also given this volunteer insight from “the other side.”

“Thanksgiving came, and I got a call that somebody wanted to bring out some food,” Van Dusartz said. “Mark Morgen came with the Love Baskets (a program through the Lions Club) and I just bawled. 

“I’ve always had a picture of the homeless family or whoever that I was helping. It was always a family that didn’t have anything. I look out there, and we have everything. We have a nice house. We have pets. We have friends. We have extended family. And now we were getting a Love Basket. Thank you isn’t a big enough word. It doesn’t hold enough.” 

And the food keeps coming. 

“Food must be an icebreaker,” VanDusartz said. “It’s like ‘Here’s some rolls. How are you?’ One gal said ‘I looked across the field and saw your house and thought I hadn’t done anything.’ She came over with a warm plate of cookies and a bag of corn: ‘Here you go. And how are you?’” 

Even with all the support she has, VanDusartz admits there are days she just wants to hide from the world. 

“Initially I thought ‘This will be fine. I’ve got all this support,’” VanDusartz said. “But I felt like I brought a monster home. I felt like I’d doomed our kids. There isn’t breast cancer in our family. I cried a lot.” 

For now, she said, she’s taking it day by day. 

“When you hear it’s the big C you think you’re not going to wake up tomorrow. When you do wake up tomorrow, you think ‘How about next week?,’” VanDusartz said. “The cancer I had was deeply affected by chemotherapy they gave me. You try to be cautiously optimistic. I ran a set of lines the other night with my basketball girls. It felt so good to know that I’m going to be able to do that again sometime.” 

“Joni keeps trying to thank everyone for the support and investment, but it really just feels good every time I’m able to make a little progress, sell a raffle ticket, collect a donation, or tell another person about our fundraiser.”

Pete VanDusartz, Joni’s brother-in-law

And someday, she hopes, she’ll have a chance to “repay” all the kindness shown to her.

“I have such a hard time receiving. The question was put to me that wouldn’t you appreciate being given the opportunity to give back to someone. But so many people keep giving and keep helping and keep doing things. I just don’t know how to fit in that.”

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

By Meg Heaton

To say Joni VanDusartz was blindsided by a cancer diagnosis would be more than an understatement. The news turned the 40-year-old wife and mother’s world upside down. But she is moving on with a clearer view than ever of what is really important.

It all started for the Hammond woman with a trip to the family doctor in May 2006 for an upper respiratory infection. While there, she asked the doctor to look at a small, red circular rash on one of her breasts. The doctor wasn’t too concerned and sent her home with a cream to treat the spot.

A week later the breast had become painfully sore and swollen. Her doctor now referred her to the Virginia Piper Cancer Institute at Abbott Northwestern Hospital in Minneapolis. She was just 39 years old and hadn’t yet started to have annual mammograms. Her first one revealed a mass, and a needle biopsy confirmed that she had invasive ductile cancer. The good news was that it appeared to be contained within a tumor in her breast, and scans revealed that it had not spread. After the initial shock, VanDusartz said she focused on what good news she got. “I’ve got a chance to beat this monster,” she thought. 

But in an examination with her oncologist, the doctor noticed that skin just under her breast was inflamed. Tests revealed that she also had inflammatory breast cancer, a cancer so aggressive that a diagnosis of it immediately places the patient at stage 3.

Only two out of 100 women diagnosed have inflammatory breast cancer and because of its aggressive nature, any surgery would have to be postponed until after a full series of chemotherapy. The first of her 52 weekly treatments started on May 17. Her cells reacted well to the drug therapy, “killing whatever they needed too.”

Just two days before Thanksgiving she had enough chemotherapy to undergo a double mastectomy. She has since resumed chemotherapy, which is scheduled to continue through October. In addition, she began radiation treatments this week.

Through all of this, the family has been dealing with another serious problem. The VanDusartzs were considering changing health insurance companies back in April before her diagnosis. They started talking to insurance agents and were in the process of switching coverage when her breast cancer was discovered, but they believed they had insurance at the time of her diagnosis. Both the old and new insurance companies have declined to cover VanDusartz’s medical expenses. The family has appealed those decisions but they have been denied. The VanDusartzes have hired an attorney to further pursue the case. It is the family’s opinion as well as that of their lawyer that their insurance policy was in effect at the time of her diagnosis.

As daunting as all this is to VanDusartz, her husband, Charlie, and their daughters, Roxanne, Casey and Xena, she says she is doing “OK.”

“When they first gave me the diagnosis and I read the statistics, it sounded pretty bad. But when I felt a little braver, I started looking for more information. I went online and read everything I could and I started to feel better and hopeful.”

VanDusartz said that ever since the family got the news, they have been surrounded by family, friends and health professionals who have provided invaluable support.

Of her doctors and nurses at Virginia Piper, VanDusartz said they have always treated her “like I was the only patient they had to worry about.”

The fatigue that resulted from her therapy and surgery was hard on VanDusartz, whose active life before cancer included working in the family’s business, VanDusartz Quality Woodworking in Hammond, volunteering at her daughters’ schools and with the Girl Scouts, coaching, even horseback riding.

“The thing is that I didn’t feel sick before all this started. I tried not to slow down after treatment started, but I just couldn’t do it. There was the fatigue, but also a lot of really hard pain in my bones.”

She had “steroid Fridays,” when those drugs sent her energy soaring, only to “crash with some pretty terrible pain” on Saturday. For her, the summer of 2006 was long and painful.

“But all this taught me something. You don’t enjoy life as much when you’re rushing around all the time. It isn’t until you have to slow down that you realize what you’ve been missing.”

VanDusartz said when they got her diagnosis they decided to be up front about it with family and friends and so they notified everyone on her email list. The response and subsequent support overwhelmed her.

“I heard from everybody. I got cards every day. I still get them. There’s a schedule to provide two meals a day for us through the end of the year, and people call up and ask when they can take a turn again. I’m so grateful to everybody. I can’t imagine doing this without their support.”

That extends to employees at their business, her co-coach who lets her do as much or as little as she can and to the teachers at the girls’ schools. “It’s important to me to stay as active and involved as I can. I can’t do as much but what I can do helps me get through this.”

VanDusartz said that while the news has been difficult for Charlie and her daughters, the family has grown even closer for having gone through the experience. She knows it has frightened her daughters and each of them has handled it in a different way.

“Roxanne doesn’t like to talk about it. Casey, our middle daughter, asks tons of questions and wants to know as much as she can, and Xena doesn’t really know what it all means beyond the fact that I lost my hair. They have handled it in their own way and they’ve been pretty amazing. We’ll get through it together.”

Like others who are facing a life-threatening disease, VanDusartz chooses to focus on the positive.

“I have never felt so loved or so supported. Who am I that people should care so much and do so much for me and my family? I’m no different than anyone else, and I guess that’s the point. I’ve never been very good at asking for or accepting help. Maybe that’s my lesson in all this — that this is really a much better world than I thought it was before all this happened. And if any of this helps other women who will face what I have, well, then, I’d take it and take it again.”

For more information about Joni VanDusartz, the kind of cancer she has and about benefits scheduled on her behalf, go to her Web site at www.supportjoni.com.

Central area Girl Scout leader recognized for service to unit

Joni VanDusartz of Hammond was recently presented with the Girl Scout Adult Outstanding Service Award.

VanDusartz was nominated for this award back in February by fellow Girl Scout leaders, and the nomination was approved by the Girl Scout Council of St. Croix Valley. The award recognizes consistently outstanding service over several years or in more than one position that benefits the service unit.

VanDusartz has been a Girl Scout volunteer in the St. Croix Central Service Unit since she was recruited by Cindy Redmon in 1998. Redmon recognized in VanDusartz an optimistic enthusiasm for helping girls be all they could be.

Redmon recalls, “Uniquely, her reaction to being asked to be a Daisy leader was a reaction we hope to find with every leader . . . ‘They asked . . . ME!’”

Many different troops have benefited from having VanDusartz as a leader, and she has served over a hundred individual girls in her troops over the last few years.

When the Service Unit Manager (SUM) position opened up about five years ago, VanDusartz stepped into that role as well, along with co-SUM, Kris Granberg. During their tenure, the service unit has added more troops and more girls and has involved more and more volunteers. More events and activities than ever before are being offered to provide girls with inter-troop experiences.

Besides all her Girl Scout volunteerism, VanDusartz is very involved in her church and the community. She has spent many hours at the St. Croix Central Elementary School with the mentoring program, Art Adventures and everything in between. She has also been a coach for youth basketball and softball teams.

“Joni is exactly the type of individual the Outstanding Service Award was designed to recognize,” Redmon said. “It was an honor to present her with the award.”