Day +760: Camp Okizu

Everyone had a great time at Camp Okizu. We left mid-afternoon on Friday and arrived early evening-ish. Okizu is in Berry Creek, which is about a 4 hour drive from San Francisco with no traffic. There was lots of traffic on the Friday before Memorial Day, unfortunately, so it took us quite a bit longer. We finally ended up taking back roads, which saved us quite a bit of time. Unfortunately, the kids were too wired to sleep Friday night, so they got to bed very late and were exhausted on Saturday.

Camp Okizu has a big lodge, little cabins that the families sleep in and several other buildings including an infirmary (of course), lodging for the staff, and a new boathouse down by the lake. Meals are served in the lodge, and the parents get together for group sessions during the mornings while camp counselors entertain the kids. It's always interesting to hear other people's stories. Some of the stories are inspirational, and others are really sad. This year they broke the group into one for leukemias and lymphomas and one for all other cancers. There were three other AML cases, and we ended up talking to each of the families. One of the little girls with AML has developed congestive heart failure from all of the chemo, which is one of our nightmare scenarios. There was also a 17-year-old who was all packed to go to college back East, and then collapsed because her red blood counts were a third of normal levels from the cancer. In one family, the father was diagnosed with lymphoma not too longer after the child was diagnosed with JMML. Another family had just learned that their son had relapsed for the 4th time, and didn't want any more chemo. The intensity and drama of the stories is totally gripping, and people are eager to hear them, even asking questions to draw out people who told a short version out of shyness or reticence. All the same, there was a sense in which I felt less personally vested in the stories than last year when it was all still so fresh. My comment when it was our turn to talk was that we are charging ahead. Mina isn't looking back, and just keeping up with her regular four-year-old issues is plenty enough to occupy our time and energy. I say "we" because I *think* Keri feels the same way about all of this, though I don't know that for sure.

We saw a lot of familiar faces from last year, both among the staff and the campers. It's funny how much you feel like you can get to know someone in such a short time. There were a few faces that we missed, which I suppose comes with the territory. The staff at Camp Okizu are really terrific. Most of them were campers themselves, either as cancer patients or as siblings, so they have a ful understanding of what these kids are going through, and they really go all out to make the kids feel special. Mina got a lot of attention all weekend, of course. Everyone was remarking how cute or how beautiful or how sweet she is. It's funny, I'm so used to her getting attention for more normal reasons, I could almost forget why she would get the extra attention at Camp Okizu. She really is doing amazingly well when you consider all that she's been through.

Saturday the kids napped through all of the afternoon activities, but they woke up in time for dinner and after dinner there was a campfire with lots of singing. The kids got up in their age groups and sang songs. Mina and Isaac's group sang a song about Tadger, a creature that lives at Camp Okizu and helps take care of things. He's part tiger, part badger and part leopard, and he lives in a little house on the top of a tree and only comes out at night after everyone has gone to bed. The kids write him letters and he sometimes writes back. I have a video of the kids singing the Tadger song that I'll post soon.

Isaac napped again on Sunday, but Mina was awake so I took her down to the lake to swim. She had a ball, of course, but got a bit cold after a while. It was in the low 80s, but a bit breezy and the water was cold. Sunday night there was a dance. Mina saved her pretty long dress to wear to the dance, and she danced with a lot of the counselors before finally coming to find me. Isaac was kind of out of it, so he and Keri went to bed early. I finally took Mina to bed about 9:00, and she fell asleep in about five minutes with no fussing.

Isaac was really fussy on Monday morning, crying hysterically about the tiniest things. It wasn't until we got home that we realized he had a slight fever. He threw up Monday night in bed, but was doing better Tuesday morning. He got bit by mosquitos all weekend and has red welts all over his face and neck. He looks a bit thrashed, actually. I seem to recall him looking thrashed at the end of camp last year too. He was very sad to be home, though. He keeps saying "I want to go back to Camp Okizu!" and I think he's serious. We played a lot of "bat the ball" while we were there, which is one of his favorite games. Mina was excited to be home. She went straight to the back room and spent the next couple of hours taking care of her babies. It's kind of what she does when she's been overly social and needs to unwind. Isaac stopped being upset after I put on some music (Bob Dylan), and he finally went and found his guitar and played that for a while.

Unfortunately, for the second straight year we did not have a working camera. I'm not sure how many pictures we would have anyway, because the magic of Camp Okizu is really in the human spirit and can't be captured on film. One of the staff promised to email me a picture she took of Mina and me, so I'll post that when I get it.

Mina was very happy to go back to school on Tuesday. Isaac couldn't go because he'd been sick, but Teacher Julie had called and asked if we would trade his Tuesday for Friday because some inspectors from the accreditation agency were going to be there and she was worried there were too many two-year-olds. Then she said "Mina has to come!" Julie said she had a great day, best she's had in weeks. Mina's friend Maddie wasn't there Tuesday, and Julie thinks the Maddie/Riley/Mina triangle has been a source of stress for Mina. I'm glad she's finally taking that seriously.

Funny things that the kids have said recently:

I was telling Mina a story, and she had to go and do something else in the middle of it, so she asked me to "pause the story."

As we were driving the backroads up to Camp Okizu, Isaac kept asking why there were no sidewalks.

When we were driving back from Camp Okizu and were approaching the Coast Range, Isaac was looking up at the mountains and remarked that "the mountains are cracked."

And last and maybe most telling: Mina asked me to read "Curious George Goes to the Hospital" the other day. Partly to be funny and partly to test her, I said the book was "Curious George Goes to the Pole House". Mina looked at me kind of funny and said "Pole House? What's the Pole House?" I had to stop suddenly and clear my throat because something got caught in it.

Day +755: 100% Donor!

Just a quick note to let you know that we finally got the result of Mina's donor engraftment study, and her blood continues to be 100% male, 100% Rodriguez! Hooray!

We're off to Camp Okizu for the long weekend, will post more when we return next week.

Day +753: No news on blood tests

Just a quick note to say that we do not yet have any news about Mina's bloodwork. They ordered several tests at Mina's two-year appointment including donor engraftment study, thyroid function test, and b-cell titers (which will tell us whether Mina is ready to receive live vaccines and can get her MMR). But they are still all outstanding. I guess we've gotten used to just assuming no news is good news. It will still be nerve-wracking when we get the engraftment results -- we really want all of her blood cells to be male, Rodriguez cells.

Mina and Isaac are doing fine these days. Mina has been having a little bit of a hard time at school. I think there is a bit of an unhealthy dynamic going on with two other girls in the school in particular. Mina hasn't been real enthusiastic about going to school lately, and today Julie said she cried four times, which she just doesn't do. Part of it may be sleep-related -- we're working really hard to get them on a regular schedule that provides enough sleep, but it's a challenge. And both Keri and Isaac are coming down with colds and not feeling all that great, so it wouldn't be much of a surprise if Mina did too. But I do think there's something going on with the other two girls that is causing stress for Mina. It's a bit hard to see, because she always has really loved school. But I guess these things are unavoidable when kids get together, and it will eventually pass. But the parents are starting to talk to each other about how to maybe shake things up a little bit.

The kids continue to be their cute, sweet selves. Mina is in more of a Daddy-phase again. She has learned that Daddy stays home on Saturdays and Sundays, and now every morning she asks what day it is. And when the answer is "Saturday" or "Sunday", she gets this huge grin on her face and she's very happy. But when the answer is one of the other days, she says "I want it to be Saturday every day!" For a long time, every time she left the house for school while I was still getting ready for work, she would say "You won't be lonely because all the babies will be here to keep you company." She's not saying that so much anymore, but her latest thing is to send things with me to work. A few weeks ago she told me I should bring Home Baby to work, so I lugged him back and forth in my bag for a few days. Yesterday she sent me with the certificate from a make-your-own teddy bear that she got from Chandler and Cole while she was in the hospital. And then she put some Care Bear bandaids in my lunch bag right before I left the house, just in case I got an owie while I was at work. Today she made sure that Momma gave me one of her pretty necklaces.

Isaac is a sweet boy too. The other day before work, I kissed him absent-mindedly on the top of his head as he was going by on his horsie, by way of saying goodbye. But then when I left the house a few minutes later, Isaac was really upset because he hadn't had the chance to give me a hug before I left. We've been putting Isaac and Mina next to each other while they sleep, and Isaac snuggles right in next to Mina and puts his hand in her hair. We're trying to get them comfortable like that so they will start going to sleep on their own, especially after we move them into the back room. The other night he somehow bonked her in the nose with his head and gave her a bloody nose. Mina was very upset when she woke up, and there was a babysitter there while Keri and I went out to dinner. We ended up cutting short our evening, mostly because the whole ordeal had woken both kids up completely and we knew it would be tough to get them back down.

We're off to Camp Okizu this weekend, assuming everyone is healthy. Leaving mid-day Friday and coming back late Monday. We are really looking forward to it. We had such a great time last year and met some really nice people. Most of the people come back during the same weekend, so we're hoping to see some of the same faces again this year. I will definitely post next week and let you know how the kids enjoyed it.

Day +742: Two-year festivities

Wow, we're already nearly two weeks past the two-year anniversary of Mina's transplant. We had been looking to that day for so long, but then it came and went and life goes on. We did go to the Russian River again that weekend like we did last year, just the family. I think that's a tradition that is going to last as long as we're in the Bay Area. We stayed in a house near Kazadero, which is near the mouth of the Russian River, just like last year and had a great time again. There's a very nice, sheltered little cove in the Salt Point State Park about an hour north of Jenner. Last year it seemed so magical, I suppose because it was our first real outing since Mina first got sick so long ago. This year it seemed just fun and normal. We've had lots of outings now, and have grown so accustomed to Mina being not only healthy but strong as an ox. Anyway, we went to the Beach on Saturday, spent part of Sunday morning throwing rocks in the creek, and then headed home so we could get back at a reasonable hour. A very enjoyable, but short weekend, which was probably for the best given everything else that has been going on.

The one very special thing that happened was that we finally had our telephone conversation with Sean Rodriguez, Mina's donor. We had arranged for him to call us at the rental house at about 8 AM Sunday morning. We'd been prepping Mina, so she came running over and I just put her on right away. Sean said that, as expected, he began to choke up as she was talking, but then he had to catch himself because he wanted to hear what she was saying. She ended up talking to him for about 5 minutes, which is a pretty lengthy phone conversation for a 4-year-old. Then I talked for an hour or so and Keri talked for another hour. He's an interesting guy, and he gave us permission to post his letter to us, which I will do in my next blog entry.

He told us quite a bit about himself, why he left the service (politics of war), what his plans are after he graduates this spring, etc. He also talked about the day he donated, which was interesting. He had to go down to New York City (a couple hours away by train) for the procedure, and they put him up in a hotel room. I guess they put him out for the procedure, and after they released him he was supposed to stay in the hotel room and rest up. But he felt like going out in public, so he walked out to Central Park, where who should he meet but his coordinator! She gave him a good bawling out, but I can totally understand why he wouldn't want to stay by himfelf in the room.

They did tell him it was a little girl who had been sick since before she was one, so he was already doing a lot of hoping that the little girl would make it. They apparently kept telling him it was always possible for him to back out, but that there was a point of no return for Mina. That would have been after they started the cyclophosphamide and total body irradiation to wipe out her own bone marrow, when she needed to get some white blood cell counts as quickly as possible. He said he never gave a thought to backing out, and was quite appalled that they would even keep asking.

The one thing he said about the procedure is that it was quite painful. They told him to have someone drive him down to the city, but he took the train instead and had to ride all the way back sitting on one butt cheek. He said he pretty much felt it for a month. I had heard that it was painful, but it was good to hear the story firsthand from him. I'm sure he feels like the physical pain is nothing compared to Mina's journey and the amazing outcome of the whole thing so far. But it makes me admire him all the more that he would do that, and feel that way about it. I don't think a lot of people would put themselves out like that for a total stranger.

Mina had her two-year appointment with the BMT team on Tuesday the 2nd after we got back. It was pretty much all smiles. Dr. Horn gave Mina her examination, and it's always good to see her. She was on service while Mina was going through the worst of it, and I'll never forget that phone call with the news of a positive blood culture for gram positive bacteria, while Mina was in intensive care, and Dr. Horn saying "The next twelve to twenty four hours will be critical." I brought Isaac along to the appointment so Keri could have some time at home, and they were both such good kids through the whole thing. Dr. Horn looked at the kids' relative heights, and immediately thought Mina should probably see an endocrinologist -- it would be suprising after all if she didn't have some hypothyroidism or other difficulties with having had TBI at such a young age. Of course, I knew Isaac was very tall for his age, and when she charted Mina's growth, Mina was holding steady at 75th percentile for height and 90th for weight. She's now 3'5" and 42 lbs.

We also bumped into Dr. Cowan in the hallway outside the clinic, and boht Mina and Isaac gave him hugs. They also hugged the "shot doctor", which is what Mina calls the phlebotomist. Mina sat by herself for her blood draw, and didn't even flinch when the needle went it. They took a lot of blood because they are running the whole battery of tests. Her counts looked great, but no results back yet on thyroid function, antibody titers (which will tell us whether she can start receiving live vaccines like MMR) and of course, donor engraftment.

We've been in a bit of a down cycle since the festivities ended -- Mina has been short on sleep, and we've all been a bit tired and grumpy. Mina has been having some conflicts with one of her best friends at school, which has been difficult to see. She's been quite sad about it at times, to the point where one day she said she didn't want to back to school, she wanted to go to kindergarten and make new friends. Yesterday she was so tired that she refused to go to the Bay Area Discovery Museum with Meghan, even though it was Meghan's last day! She cried and cried, until Keri finally let her stay home with her. I'm sure that these things will pass, and school will be out for the summer in a few short weeks. Meghan will really be missed though. She's been with us since Mina still had short hair and a puffy face from the steroids, and she's more like part of the family than like a babysitter. Mina keeps saying "That's OK, because she will still come and visit us!" But I'm sure she doesn't understand that Meghan is moving 3000 miles away, so we really won't be seeing much of her...

If you've made it this far, congratulations and thanks for checking in!