Powerful Medicine

If you know the name “Camp Okizu,” most likely you or someone close to you is in the club. “Okizu,” is a Sioux Indian term meaning “unity,” and it’s powerful medicine for the kids and families affected by childhood cancer, as well as for the medical personnel who treat them. Children, siblings and parents each learn they are not alone on their journey to defeat the cancer that has invaded their lives, to sort out their emotions or survive their grief. Pediatric medical specialists throughout Northern California, who share the camp experience with their patients and colleagues, find their spirits are lifted, also. The feeling of unity that permeates the camp is solid and real for all who come.

Located in Berry Creek, Calif., near the town of Oroville, Camp Okizu can be that bright light at the end of a long, scary tunnel of twists and turns that young patients and their families must travel. Camp is likely the only place, other than the hospital, where many children can meet other kids who have lost their hair during chemotherapy, had to face a limb amputation or suffered a relapse after months or years off their treatment. For many, it is the happy
memories of camp and the anticipation of the next year that help them through their painful treatments and diagnostic procedures.

Okizu Foundation founding director John Bell sees how the camp experience can make a real difference in a child’s ability to cope with the disease and the family’s emotional stress. While he was assisting his friend, Robert Sturhahn, with his hospice care, Bell promised him he would start a camp to help children.

“It was only after we started the camp that we realized we needed to treat the whole family and help make them stronger as they take this journey together,” says Bell. “At Okizu, we want to introduce them to the spirit of the camp, where they meet people whose sole purpose is to make other people stronger; and then by giving, you become one of those people who makes others better.”

There is no charge to send a child or family to camp. The camping experience is made possible through the financial support of foundations, community organizations and individuals. Children from six to 17 years old are eligible if they or their siblings have or have had cancer.

Experience of a Lifetime

When a child is diagnosed with cancer, a portion of his or her normal childhood goes on “hold,” and the first priority becomes the business of getting well. The illness, its complications and the treatments curtail a child’s chances to experience usual developmental activities. At camp, children rediscover that they are children and not just cancer patients. A residential camping experience while they are undergoing or recovering from cancer treatments allows them to experiment and discover independence and a return to some normalcy in their young lives – with medical personnel close at hand. The program is provided by the pediatric oncology physicians, nurses and therapists from the participating hospitals of Northern California: U.C. Medical Center, San Francisco;Children’s Hospital Medical Center, Oakland; John Muir Hospital, Walnut Creek; Kaiser Permanente Medical Center, Walnut Creek; U.C. Davis Medical Center, Sacramento; Lucile Salter Packard Children’s Hospital at Stanford; and Sutter Medical Center, Sacramento.

All prescription medications and chemotherapy are administered at camp as needed, and there is an infirmary on site. Pediatric oncologist at Kaiser Permanente in Sacramento, Kent Jolly, M.D., started going to camp when he was still in his residency and has been a steady camper ever since.

“All but the sickest kids can go any week because they go with a nurse and doctor to administer their treatments, a one-on-one counselor, and if they’re not up to all activities, they can ride around in a golf cart,” says Jolly. “For the medical professional, it’s great because I can’t follow the kids to school or see how they go back and have a normal childhood, but we can see and be part of that success together at camp. It’s very motivating.”

Powerful peer friendships take root and blossom with kids and their families who return summer after summer. These relationships have strong bonds, and it’s not unusual to meet counselors who once were cancer patients or
cancer-patient siblings themselves. Now with a reservoir of important camp memories, they return and help other kids and their families navigate the stress.

A Date With His Nurse

It can be a huge leap from a hospital sick bed to a ride on the zip line or stargazing on campfire nights, but sometimes you just can’t keep a good kid down. Last summer, then-12-year-old Brandon Willems, a patient of Jolly’s, finished his cancer therapy one week and went off to oncology camp the next. Later in the summer, he went back to camp with his family where he saw his favorite nurse, Sloan Clayton, R.N. They had such a good time he made a date to go with her again this summer. “Last year was my first time at camp, and one day was all it took – I’m hooked; I need camp,” says Clayton. “It puts it all in perspective. I did terrible things to this awesome kid last year that made him sick, so it’s important to share in his good health, too.”

Hanging Around and Upside Down

After a family has been through the emotional rollercoaster of living with cancer, it’s just good to be able to relax together, climb a tree, hang upside down and ride on the popular zip line. Carrie and Roger Willems are looking forward to doing exactly that when they take Brandon and his 14-year-old brother, Jeffrey, back to family camp this summer.

“Brandon was diagnosed with Burkitts lymphoma (a rare, often fatal cancer of the lymphatic system) in April, and we couldn’t believe by summer we were all at camp together – with him back on the road to good health and the tumors gone,” says Willems of her son. “At camp we realized we weren’t alone; there were families with much more severe situations, and my husband, Roger, met other dads who also couldn’t focus on their work while their child was so ill.”

Unique Sibling and Family Bereavement Weekends

Okizu is one of only a handful of children’s camps in the country that offer programs just for siblings, as well as family-bereavement weekends. These programs are the result of a collaborative effort of the foundation and pediatric oncology treatment programs in Northern California.

Dr. Michael Amylon, Professor Emeritus of Pediatric Hematology and Oncology at the Lucile Salter Packard Children’s Hospital at Stanford, has been serving as the camp’s medical director since it began 26 years ago. “The peer support and shared experience found at Okizu forms bonds that transcend camp week because it’s rare for patients and siblings to find this type of connection in any other situation,” says Amylon. “For families who can have no vacations, no trips and must put everything on hold for years if the child has a fever, the camp provides one opportunity to relax and be in a comfort zone together.”

And that’s the message of Okizu – no matter where the kids or family members are on their journey, once they reach camp, they know they’re not alone.


He took his last breath at 11:54 p.m. on May 10, 2006, and then he was gone. Shrunken, emaciated and just worn out, 11-year-old Derek Madsen gave up his valiant fight in his mother’s arms. For almost the next three hours, his body would rest on the family sofa while his brothers and mother waited for hospice to return and sign his death certificate. His journey was over, but theirs would continue.

In the year since Derek’s death, Cyndie French, a single mother of five, would step outside her grief intermittently to try to figure out how to make sense of those rugged 18 months between Derek’s diagnosis and death due to neuroblastoma, a rare, aggressive childhood cancer. As the disease marched on throughout Derek’s body from his nerve cells to his bones and then into his internal organs, she had tried to explain it to him and prepare his brothers, Anthony (18), Micah (17), and Vincent (15) and his 6-year-old sister, Brianna, for what was next. She didn’t know herself, but Derek did. He had a wish.

Derek’s Wish

In between all the medical procedures, the trauma and fits of angry outbursts, Derek wanted his short life to have had a purpose. To make sense of his sheer pain and the financial problems his cancer was causing for his mother, he wanted to transcend his wasting body and reach out to create some-thing good for others. His mother under-stood this, and together, in his calmer moments, they discussed what has become Dereks-Wish.com — a nonprofit corporation dedicated to financially assisting families fighting cancer.

“He trusted me and trusts me still,” says French. “Derek would say to me, ‘Mom, people need to know about these families – remember how we’ve felt.’”

As the physical and emotional struggle became compounded with their financial crisis, French would increasingly lean on her strong sons, and they would do their best to help shoulder the horror of it all. With Derek’s passing, they understood their new responsibility. They would honor Derek’s wish.

Even with a sense of purpose, their grief has been more than their family could bear at times, in this first year since Derek’s death. As the numbness wore off, French and her children tried to climb out of the chasm of their anguish and loss. There were thoughts of suicide, frustration and finally anger at the six-month mark of their grief.

“It was about January when I just had to pull my car over, and I stopped at a fire station where I knew I could get help if I needed it,” says French. “I hadn’t eaten in several days, people were pushing me to move on and ‘get over’ Derek’s death, my thoughts were flying around, and I knew I needed help. So, I just let it out, and I screamed at God, ‘Why did you take him? I miss him so much.’”

During this time the bills continued to arrive. French, who had been running a nail shop and tanning salon before Derek’s illness, couldn’t take care of her dying son and also be on the job. She chose to be her son’s constant companion and somehow still be there for her other children by resorting to car washes and bake sales to raise money for Derek’s medical treatments and prescriptions.

Headed For Okizu

Today, she finds great solace in being a community activist. She continues to set a strong example for her children about volunteerism to help others. In April, French held her first fundraiser and was able to make the first award from Derek’s Wish with a check for $500 to a family in need. On Mother’s Day weekend, French and her children volunteered at the Susan G. Komen Race for the Cure as they do each year, and later helped get 120 people to donate blood for BloodSource. With a single-minded purpose, she is seeking marketing partners who will help keep Derek’s Wish alive so that some funds can be provided as humanitarian relief for families drowning in debt.

"Why should a dying child like Derek be worried about how we’re going to pay the rent?” asks French, who this summer and fall, will take her children to Camp Okizu’s family and bereavement camps. Together, as they reach out to help others, they, too, will learn they are not alone.