Day +398: Camp Okizu

Finally getting a chance to post about our weekend at Camp Okizu. Kids have been up late all week, so I've had a hard time getting to the computer while still awake enough to be lucid. I'm still kind of emotional from my time there, so my apologies in advance for what is likely to be a very long posting.

Camp Okizu is a camp that is owned by the Okizu Foundation, which benefits kids and families of kids with cancer. They have family camps, where all members of the family can attend, oncology camps attended only by kids with cancer, and sibling camps attended only by the siblings of kids with cancer. It was founded about 20 years ago by a man I know only as "Dr. Mike". Dr. Mike was formerly the director of the bone marrow transplant service at Lucille Packard Children's Hospital at Stanford, but he now runs the camps full time and only works at Packard one or two days a month. He had the vision to recognize that hospitals treat the medical aspects of children's cancer, but that our medical system ignores the psycho-social aspects that are also very important to healing. Camp Okizu is a place for kids and their families to go and heal. It's as simple as that, really.

I just can't say enough about how incredible it was to be in that setting. Even though we've been dealing with Mina's cancer for two and a half years now, we haven't had a lot of contact with other families. We were pretty isolated while at UCSF because Mina wasn't allowed to go out into the hallways most of the time we were inpatient. It was also challenging enough just dealing with our own issues that we didn't have a lot of energy to get to know other people at that time. So it was really rewarding to meet 60 other families that know and understand what we've been through and continue to go through. The kids were in supervised activities from 9:00 to 12:00 every morning while the adults had group sessions where everyone told their stories and just talked about the whole variety of issues we're all dealing with, from the constant worrying to problems with siblings, insurance, late effects, school issues, etc. So many of the issues are similar that it felt very easy and very therapeutic to connect to these families.

It was really interesting to hear the other families' stories. There were leukemias, sarcomas, neuroblastomas, other cancers, and some kids with rare non-cancer disorders that are treated like cancers. Some of the stories were very intense, including a girl with a rare brain disorder that was somehow treated with a stem cell transplant from umbilical cord blood. This girl is one of a few known survivors of her disorder, and the only one of 16 transplant patients on the floor at the time they were at Duke to survive. Another kid has a brain tumor that isn't operable, and his parents don't believe in chemotherapy. I'd be appalled if the tumor was anywhere but in the brain, but the standard treatments for brain tumors is almost guaranteed to result in mental impairment. He's taking herbs and vitamins and all kinds of alternative therapies, and it's been five years and he's doing OK. He's ten or so now, and seems like a really nice kid. The tumor is still there, and his prognosis is probably pretty dim, but at least he's had a pretty good five years.

I'm not sure I've fully internalized just how crazy Mina's story is, but I guess relapsed AML and surviving Grade IV Acute Graft vs. Host Disease puts us toward the intense side of the spectrum. People visibly cringed when I described the skin rash and gut symptoms, and several people came up to us during the course of the weekend to talk about our story and to gush about how good Mina Brigitta looks.

I don't think I had a good sense of the need for a sibling camp until this weekend. Many of the siblings are dealing with very real issues including feelings of grief, anger, jealousy, neglect, loss of self esteem, etc., and their issues are largely ignored because the issues their siblings are facing are so much more immediate. We heard some very intense stories about sibling behavior issues. One family had their children HLA-types for a potential stem cell transplant, and one of the kids was a match. The kid was five years old or so at the time, and they talked to him about the fact that he was a match and exactly how the process would work, and doctors and psychologists talked to the kid and everyone agreed he understood exactly what the deal was. Well, somehow the kid came to believe that they were going to sacrifice him to save his brother, and he began acting out whenever his brother had a doctor's appointment, thinking they were going to come and take him out of school and that would be the end of him. He's now dealing with post-traumatic stress disorder, and has had kind of a rough time. But we heard some great stories about how camp is the only place those kids feel like they can open up and talk to others in similar situations and how helpful that is for them.

I think the best part of the weekend was just watching the kids. There were kids with a variety of disabilities from mobility limitations to mental impairments, and kids still in treatment that were pale and skinny with shiny bald heads or cute little caps. But most of the kids seemed as normal as can be, and in many cases I couldn't tell which of the siblings was the patient. The common thread was that the kids were all very enthusiastic, even the teenagers. To see them in that setting, running around and having fun, doing all the things kids are supposed to be doing, despite all of the challenges and hard times and everything else these kids have faced in their lives, was just incredibly moving to me. It's interesting -- the goal for sibling camp is for the kids to feel special, while the goal for oncology camp is for the kids to feel normal. These kids seemed like normal kids having fun at camp, and that is an incredibly just in itself.

The staff there was extremely enthusiastic and helpful as well. It's mostly volunteers, and many of them are former campers, so they've been where these kids are and they have a special empathy. They really worked hard to help the kids have a good time.

The foundation purchased the current camp property outside of Chico, CA several years ago. The facilities are new but are not luxurious by any means. The camps are totally free, which means anyone can come. They even provide busses for the weeklong camps. The foundation doesn't have a huge endowment and pretty much lives year to year. If anyone is looking for a worthy cause to donate to, you can probably tell I give this one a hearty endorsement. Here's a link to the information: http://www.okizu.org/donate.html.

Settling back in this week. Mina seems older and more mature all the time. Keri thinks our time in the Northwest was really good for her, and I'll say the same thing about the weekend. It's pretty overwhelming to think about where we've been, and this weekend brought it back into sharp focus. For so many reasons, we are so thankful to be where we are.