Day +424: Weekend at Richard and Tutu's house

We had a wonderful weekend in La Verne, California at the home of Toni and Richard Hall. Toni ("Tutu" to the kids) is Keri's stepmother; she was married to Keri's father David Olsen, who passed away from T-cell lymphoma several years ago. She has since remarried, and her husband Richard has embraced David's children and grandchildren as if they were his own blood. We felt very much embraced and welcomed in their home and in their community, which is a really wonderful feeling. Their church has been praying for Mina Brigitta, and pastor Craig flew up to visit us when we first went back into the hospital in February 2005. Craig was also a close friend of David's, and he too has really embraced us. He even made a special point of praying for Keri and me during the service on Sunday, which was a really nice gesture. It felt really great to be able to bring Mina Brigitta to that community so they could see and enjoy her in person.

The occasion for the weekend was that Tutu was graduating from Trinity Bible College with a master's degree. Auntie Teri came down for the graduation as well, so that was a treat. The kids had a great time. We rented a minivan and stayed in a hotel on Thursday night, and the novelty factor was really helpful in keeping them occupied during the "yong yong yong yong yong yong yong yong drive". Tutu and Richard have a little pool in their backyard, and I tried to get the kids to go in with me all day Saturday to no avail. Finally Pastor Craig brought his three kids over in the late afternoon, and seeing the other kids having a great time in the pool was enough to convince Mina to try it. She jumped off the step into my arms and we made a big splash. She laughed and laughed, and then didn't stop for an hour and a half. I'd been in the pool all day and was getting pretty tired, but she just wanted to jump into the water over and overa gain. Finally she had to go potty, and we took advantage of the opportunity to dry her off and get her into her clothes. We were wondering if she would go back in right away on Sunday or would need some coaxing, but she woke up early on Sunday and the very first thing she said to me was "I yike jumping in dat water!"

Mina Brigitta has clinic on Wednesday, so I'll update the blog again later this week. It's been six weeks since her last appointment, which has actually been a bit
nerve-wracking since everyone in the family has had at least two colds since then and at one point she had several bruises that looked a tad suspicious (i.e., possibility of low platelets which would be a very bad sign). But the bruises seem to have gone away and she's very pink and full of energy, so I'm not as worried as I was a week or so ago. Still, I'll breathe easier when I know her counts are healthy.

Day +416: Happy Father's Day!

We had a pretty mellow day today. Keri got up with the kids today, and I slept in until 9:30! Can't remember the last time I did that. Isaac took an early nap, and then we all went for a walk together down at the Styling Botanical Garden in Golden Gate Park. The kids had fun playing near the fountain, watching the turtles and carp in a large pond, and climbing on rocks. Mina is becoming quite the climber and is a good walker. Her running and jumping are improving, though I think she's still pretty far behind in those areas. They had a lot of fun today, though.

Yesterday we went to the first-ever UCSF Bone Marrow Transplant Survivor's Picnic. It was in interesting experience. We didn't get as much opporunity to speak to the other parents as we would have liked, but the stories we did hear were quite interesting. There was a little girl there who was having her transplant when Mina was in the hospital. She's just about the same age and same size as Mina. They used to interact through the window when Annabella would roam the hallway, but Mina Brigitta was always neutropenic and couldn't go out. Their first opportunity to interact in person was in the walk-in clinic. It didn't take them long yesterday before they were walking around hand-in-hand. There were a couple of people there who had been transplanted 20 years ago, so that was very nice and reassuring to see them there.

Dr. Horn gave a talk on late effects for BMT patients, and it was a bit sobering. We're already pretty familiar with the literature, but somehow I hadn't realized that more than 50% of patients who received total body irradiation end up "short-statured", i.e., at the 10th percentile or below due to a lack of human growth hormone (HGH). Synthetic HGH can be prescribed (and not just for Major League baseball players), but studies appear to show a slightly elevated cancer risk from use of HGH. Secondary cancers are another serious problem -- the rate at 10 years is 4%, but it rises to 11% at 15 years out, which is where the data currently ends. Treatments have been adjusted somewhat since that first generation of BMT patients, but this is still pretty scary. We also learned that the pregnancy rate for female BMT survivors is something like 1%, so it's not out of the question for Mina Brigitta, but highly unlikely. The data on neuropsychological effects was more reassuring, however. It showed some very small effects on average IQ scores, with somewhat greater effects on spatial reasoning. Unfortunately, just about all of the effects were more severe for patients that were less than three when receiving radiation treatment. No telling what's in store for our Mina Brigitta, of course, but it helps to know what to watch out for.

It was good to see Dr. Horn and Dr. Cowan. I hadn't seen them in months. Mina really likes Dr. Cowan; when she saw him she squealed and ran over and gave him a big hug. He's a very kind man, and I'm sure that must be very gratifying for him. Dr. Horn made some mention of how tense things were with Mina at this time last year. Guess it made an impression on her too!

The kids are growing up and their interaction is becoming more challenging. Isaac now has his own preferences about how things ought to go, and Mina is, shall we say, not always very accommodating. Mina is becoming a bit of a challenge, actually. She's still very sweet, but she's becoming more headstrong and now will challenge us directly when we ask her not to do something. Everyone thinks she needs more exercise and stimulation than Keri can provide for her in our little flat. This summer should be good for her, and she'll be starting preschool three days a week in the fall. She's definitely ready for that.

Day +411: Coughing and sniffling

Lots of going on around our house these days. Isaac was the first to get sick about a week ago, and then Keri and Mina Brigitta followed pretty quickly. I didn't feel it until Friday and Saturday, but I got off pretty lightly and felt well enough to go on my business trip late Sunday, though facilitating an all-day meeting on Monday wasn't easy. Keri said she felt pretty horrible last week and Isaac was definitely out of sorts for a few days, but about the only effects we've seen on Mina is a runny nose and crusty eyes. She should still have some protection from her last dose of IVIG, so that has probably helped spare her. Isaac and Mina both went on amoxycillin. I don't relish putting Mina back on antibiotics, but Dr. Loh said her B-cell function came back a little low after her last checkup, so it's probably for the best. Will be interesting to see if she gets c. diff. this time. We'll have to watch a lot more carefully now that Mina is no longer in diapers.

We are still trying to figure out our summer schedule. Keri and the kids will spend about six weeks in the Northwest and I'll join them at various times, but I'll be doing a lot of flying around the Northwest at the same time. Right now it looks like my August itinerary will be San Francisco-Idaho Falls-Spokane-Eugene-Wenatchee-San Francisco, with a couple of trips to Boise tossed in somewhere. It'll be a busy summer for me as I try to make up for lost time a bit at work, but I'll find some downtime here and there.

Not a lot of news otherwise. Mina has not been to the oncologist in three or four weeks, so there is no other medical news at the moment. She'll go back in once before the trip. It's interesting, there are little indications here and there that her memories of that time are fading. The other day Keri unearthed the ankle brace she wore for about three weeks last summer when she fell down and hurt her leg on her first trip back to the playground. Mina didn't recognize it, not even after we tried to jog her memory. Maybe it would have come back if we'd put it on her leg. Then the other day we were reading one of the Curious George books where George ends up in the hospital with a broken leg. Mina said, almost wistfully, "I used to go to the hospital!" I said "Not anymore, though!" She said "Why?" I stammered for a few seconds, and then gave up. Too complicated to explain. I'm looking forward to the day when she's forgotten all about the hospital and I have to explain everything to her.

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.