The house that JW built - Renew | Repurpose

19 May 2019

The house that JW built

While undergoing cancer treatment, 15-year-old Jan-Willem Knapen (JW) had the idea for a “home away from home” – a welcoming place close to the hospital with overnight lodging where families could stay together during a medical crisis.

 

JW’s parents and siblings in front of JW House (photo: JWHouse.org)

But first, back up a few years. 

During the cancer years, my husband, Gary, and I understood that giving back from a hard place was part of living well. We wanted to inspire others with cancer to look for purpose and meaning. And we wanted a variety of stories—all ages, all cancer types, all regions of the country.

We somehow learned of Jan-Willem’s incredible story. I connected with Anne Marie over the phone and we’ve been friends ever since.

JW was diagnosed with leukemia at age four. Chemo and radiation were prescribed, and the young boy was eventually declared healthy.

In his freshman year of high school—after some unusual symptoms and extensive tests—he was diagnosed with brain cancer. 

Just before his sophomore year, JW was doing better than his doctors had hoped, and the Knapen family planned a trip to their native Belgium. Instead of making the rounds to see everyone, which can be exhausting, they would invite family and friends to a reception.

It was customary for guests to bring gifts. But instead of gifts, JW asked if their family and friends could contribute toward his vision of a respite house – an idea he had shared with his oncologist, Dr. Alan Wong.

When JW’s health took a turn for the worse, the trip to Belgium was cancelled. His biggest disappointment was that now there would be no funds for Dr. Wong and their dream project.

But word got out, a Belgian newspaper ran the story, and contributions came in from all over Belgium. 

In May 2004, JW presented a check for $10,000 to Dr. Wong.

 

JW with his oncologist, Dr. Alan Wong

Another $5,000 came in from Belgium, and from that time until he died on August 3, 2005, JW fundraised in a variety of ways: at schools, by selling blue bracelets, you name it.

The hospital where JW was treated jumped on board, a nonprofit was created, and with the help of American friends, neighbors and colleagues, JW’s seed money grew to $2.2 million.

JW House opened its doors to its first guests in 2008. The House contains four studio apartments for overnight accommodations. And day use space is available for families to hang out in between medical appointments, to shower, do laundry, eat, and simply be together.

Guests are welcome to access the kitchen for breakfasts and lunches, helping themselves to food from the fridge.

But dinner … now that’s a different story. JW House provides dinner 365 days of the year. These evening meals are prepared by service groups and families. The JW House Young Professional Advisory Council (YPAC) and the student board take their turns cooking. Sometimes even a local restaurant will get involved.

The House was a big part of Knapen family life when Jan-Willem’s younger siblings were growing up, and Anne Marie has been a dynamic force from the beginning.

All three siblings, during their junior and/or senior years of high school, served on the student board, which actively raises funds. And Anne Marie serves on a couple of the JW House boards and as a volunteer. “It’s a nice way to stay connected because you get to meet staff and other volunteers,” she said when I talked with her earlier this week. 

A little more than ten years in operation, the House statistics are incredible. Number of overnight stays provided = in the thousands. It’s the same with the number of dinners served, day use visits, number of volunteer hours. All in the thousands.

“JW’s and our goal is to take care of the caregivers,” said Anne Marie, “so that they have renewed energy to take care of their loved one who’s sick or in the hospital.”

This undertaking has been an amazing team effort. A big-hearted teenager had a dream. His native country of Belgium generously built on it. Fellow Americans contributed in volunteer labor and financial gifts (“And still do!” said Anne Marie).

And it was all held together by Anne Marie and her remarkable family who carried their son’s — and their brother’s — vision forward.

“After JW died, we were able to continue to build,” said Anne Marie. “Not only a house but also relationships. And that has been a blessing to us.”

If I were to pronounce a house benediction on this warm and welcoming “home away from home,” it would be these words by Mary Anne Radmacher:

May your walls know joy, may every room hold laughter, and every window open to great possibility.

P.S. If your heart was tugged by the story of this incredible teenager and his family, please consider making a donation at JW House to enable them to continue serving families in medical crises.

20 Comments
  • Tracy Crump says:

    Beautiful story, Marlys. Thank you for sharing.

  • Gary A. Bonacker says:

    It’s great to hear some positive things about life. I am in treatment again, this will put me in 150 rounds club. A club that no one once to belong too.
    Thanks ,

    • Ugh, Gary. I’m so sorry to hear you’ve joined the 150 rounds club. I can’t even begin to imagine your pain and frustration and sense of loss … and yet your determination and resilience and courage. You have been, and continue to be, one of my heroes.

  • Grace Lawson says:

    Beautiful story for sure. God bless the family of JW as they help so many people.

  • Great story Marlys! Hope our Respite House has a big impact like the one in the story.

  • Peggy Carey says:

    Thanks Marlys,
    an example of silver lining for sure.

    • Peggy, I can’t imagine having a child suffer and die from this horrid disease … but then to pour one’s life into this very cool thing that has benefitted so many others – and certainly those with children suffering from cancer. Which would awaken so many memories and sorrow, I would think.

  • Beautiful. Thank you for sharing with us.

  • Peter says:

    A great and encouraging read, thanks again. Over here, locally, following our fight with cancer, Barbara’s specialist was keen to explore the ‘Holistic approach’ which was very much dismissed at that time. However, lots of folks got on board, several of my cycle challenges were supported by donations to the cause along with other positive responses and the ‘Holistic Cancer Care Unit’ was opened and has been adopted into the NHS (i.e. our James Cook Hospital) and it is much talked of and used, making the lives of many so much more manageable/tolerable. I take the opportunity when being invited to share as a speaker, to encourage folks to consider a visit the the Holistic Unit because of its ‘overall therapeutic atmosphere’. Amen to such centre’s of ‘caring’. Thanks Marly’s, our love, God Bless, Bx P & family.

    • The Holistic Cancer Care Unit sounds awesome, Peter. I love the idea of organizations/institutions that are going about the business of making the lives of patients and their caregivers so much more manageable.

  • Cyndi Barkley says:

    A comment to Peter’s post: I think your holistic approach is very interesting. In our effort to become healthier in general we have become more aware of the importance nutrition plays in not only improving our health but preventing and healing cancer and many other life threatening diseases and conditions. It’s nice to know we can have more control of our health and the outcome to our bodies response to disease. There is so much information available to us but it does require some effort on our part to search it out. You Tube is a great resource and from there you can find many books on the subject. Prayers to all fighting life threatening diseases on their own terms.

    • So true, Cyndi: “It’s nice to know we can have more control of our health and the outcome to our bodies response to disease.” In our own story, Gary and I started eating more healthfully, we took on the Cascade Mountain trails with year-round hiking and snow-shoeing, found ways to give back, got plugged into community … and of course our faith undergirded all that. And Gary lived TEN amazing, courageous, far-reaching years with late-stage disease. Thank you for sharing your wisdom.

    • Peter Howe B.E.M. says:

      Dear Cyndi & Marlys,
      Thanks so much, sharing is a pretty LARGE key to any progress. I guess ‘back then’ Holistic treatments/remedies were dismissed (over here it would be the ‘British stiff upper lip… “Oh no, we don’t do anything like that”) BUT to see where the Holistic center/unit has taken people who really do need ‘a push’ to go for it and find out more, it really is a small oasis of many possibilities. Marlys, you remember me telling you about Laura Ashurst who gave her testimony through Cancer Research UK, well she too was a ‘cog in the wheel’ to get the centre/unit up and running. Our grand daughter Laura who had leukaemia from 7 yrs of age, she too is Laura Ashurst friend and was involved due to A Celebration of Life after Cancer (by the way our miracle – Laura gets married in July.. another miracle. Your comments about Gary and you ‘getting out there and facing the world’ while taking in God’s wilderness, I can look back now and think, my 25% chance of survival and my Barbara’s encounter with breast cancer, MAY have caused me to start to challenge my time on earth AND like you my sojourns cycling so many places in the world/singing/writing songs/doing sketches/art work and being a speaker/story teller, with all funds in support of what to us are important matters. Trying to make a difference while enjoying ones self is pretty awesome, I do believe AND I certainly do believe God has His hand on all of this. God Bless, good to share with you. Bx P & family

  • Pat says:

    Thank you for sharing…
    I have five friends currently battling cancer, plus a nephew on his 11th year. Need is always needed in all aspects of this terrible disease.
    🙏🏻


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About Me

Hello, my name is Marlys Johnson. I’m a cancer widow, author, speaker and blogger. I love getting outdoors; would rather lace up hiking boots than go shopping. I have a passion for repurposing old junk into cool new stuff. And an even greater passion for showing people how to navigate life’s challenges. Tenaciously. And with heart wide open.

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