Day +366: Perfect Day

Logging from on the road to tell about our day today. After much discussion about whether we should stick with the Wintu theme and go somewhere in the Central Valley, we ended up on the Sonoma coast near the mouth of the Russian River, which is closer to home and certainly much cooler. It's also quite spectacular. It's not very populated, despite being less than a three hour's drive from San Francisco, but there is obviously a lot of money here as the restaurants tend to be of the gourmet variety and we were very pleased to discover that the little town of Duncan Mills, population 70, has a coffee roaster. Steep hillsides that are bright green from all the rain we've been having, ocean views that go on forever, interspersed with patches of redwood and douglas fir forest. We're staying in a little vacation home surrounded by second-growth redwoods, 100 yards from a creek with a nice sandy beach and about a 20 minute drive to the ocean. The weather has been gorgeous, very sunny and in the low 70s with no wind to speak of.

We arrived mid-afternoon on Saturday, and Isaac and I explored the creek while Mina slept. We finally woke her so that we could go out and get some dinner and try to catch the sunset at the beach. We were successful on both counts, but Mina was wired when we got home and got to bed very late. Since yesterday was kind of a travel & errands day, we figured today was the day that we would really be celebrating how far we've come since April 29, 2005.

Everyone woke up tired and short of sleep today, so I was a bit concerned about the day. We headed north along the coast and ended up driving an hour and a half. But both kids stayed awake, amazingly. They must have been too excited to sleep, even though they were mellow. The first activity was a stop at the Kruse Rhododendron State Reserve, a little patch of open area where a bunch of wild rhododendrons grew up. Mina was mad at first that we didn't go straight to the beach, but she loved the place so much she didn't want to leave. It had a little quarter mile loop trail, and Mina did it twice and wanted to go around again. First she was looking at the flowers, then she was hunting for bunnies, and finally she was picking up sticks from off the ground and trying to fit them back into the trees she thought they fell from. It took some convincing to get her back into the car.

We finally arrived at the beach at around 1:00. We found a really beautiful little cove with a nice sandy beach with two small streams. Mina has always really loved playing in the sand, but she hasn't been allowed to much since January 2005. Today, with her immune system fully recovered as far as they can test, we pretty much threw caution to the wind, lathered her up in SPF 30 sunscreen, and turned her loose. She played in the sand, then she played in the creek, then she was dropping sand into the creek, then bringing rocks into the creek, then running through the creek, having a ball all the way. Then we headed over to the other creek and she spent half an hour helping a man build a little diversion dam out of rocks and sand. His own kids were coming and going, but Mina stuck right by him and helped him fill buckets with sand and dig out the little canal he was working on. He didn't seem to mind. Isaac was so tired when we got to the beach he just wanted to be held by Mama, but we finally got him down to the creek and he rallied and had a great time.

After a couple of hours, everyone was hungry and we wanted to get Mina out of the sun, so we headed for the car. Mina cried big tears and wailed "I want to help dat man!" But she perked up pretty quickly and then asked if we could come back again. We finally got them some food and they crashed hard in the car. We sort of meandered back here, stopping to look at the view, get coffees and buy groceries, and they both woke up when we arrived at around 5:00. Then the kids and I headed down to the creek for more fun with sand, rocks and water while Keri got dinner ready.

Today was a day where we mostly celebrated where we are, rather than looking back at where we've been. We've done enough of that, or at least I have, that I felt really good about it and didn't feel the need to look back at the pictures or spend a lot of timing talking about it, though of course it's come up between Keri and me. Today's mood felt a lot like the mood of her transplant day. I remember well the sunny weather and the warm, optimistic glow we had that day, especially with the nice letter that the donor sent. We still have a long, long way to go, and Mina Brigitta will be living with some after-effects of her treatment for the rest of her life, but I'm just so grateful that we have been given the opportunity to spend a day like today with her.

I'm taking Monday off work, so we'll head back to the beach in the morning and leave for home in the early afternoon. Thanks to everyone for writing in and thinking of us. It really means a lot to us. By the way, because I'm so hopelessly behind in organizing our photos, I'm grateful to be able to post a link to these photos that Zeedie and Russell took when Keri and the kids were at their house on Guemas Island April 17-18: http://www.kodakgallery.com/ShareLandingSignin.jsp?Uc=ih2tu6f.6v6wn4tv&Uy=-86cub3&Upost_signin=Slideshow.jsp%3Fmode%3Dfromshare&Ux=0. Some great shots of the kids, Zeedie and Russell's daughters Emma and Otter Moon, and of their beautiful property and the house they're building on it.

Day +360: Readjusting to our little flat

After nine days at Teri and Brent's palatial home on 5 acres in Lake Stevens, we're readjusting to our little 2-bedroom flat with no outdoor space. Isaac did nothing but run around all week. He ran all over the house, around and around and up the stairs and down the stairs and around and around again. Then Uncle or cousin Nicholas or Daddy would take him outside and he would run around on the grass. Mina Brigitta was very active as well, though not quite so much as her brother. Her favorite activity was chasing the kitty around. She didn't understand why the cat kept running away, but she got very excited whenever she saw it.

I think about the only time Isaac sat down was when he was in the car "driving", which became one of his favorite activities. Auntie let him sit in her car by himself, and he would sit there for a long time working the seat belt, pushing buttons, and turning the steering wheel. He'd say "want drive blue car-car!" Yesterday he said he wanted to "drive uncle truck!" We can't exactly let him sit in the car by himself on the street, so that activity is going to have to end, unfortunately.

Mina Brigitta had a wonderful birthday. There were 25-30 or so people there including three grandparents, six first cousins, two aunts, one uncle, and quite a few members of Brent's family, who all live in Lake Stevens. Seemed like everyone was hanging on everything Mina Brigitta did, and she had a good night. She knows the birthday drill by now, and she waited patiently while we sang Happy Birthday to her and then made short work of the three candles. Isaac was sitting next to her, and he liked the singing so much that he said "More!" when we were done, so Auntie re-lit the candles and sang it again. The singing was very nice; it was a somewhat more enthusiastic rendering of Happy Birthday than normal, seems to me. It made a big impression on Isaac, he still asks us to sing "Happy doo doo." Mina managed to overcome her shyness while she was opening presents and say thank yous and give hugs. She was especially excited about a bright purple and green sleeping bag, complete with a flower pillow, from Brent's brother Bryan and his family.

Nine days was a nice long trip. We got to spend some real quality time with the Paylors, and had a couple days with Grandma and Grandpa and Kari and Carmen too. Isaac absolutely loved his Anta Teri. I was definitely third choice after about Monday, and Uncle Brent was gaining on me after he took Isaac for a ride on their ATV quad. He loved his cousins too, and by the end he was calling Nicholas "Nick-a-nuss" and Kennedy "Ken-DEEEE".

Just re-read this description, and I'm not even doing it justice. It was just very, very nice to connect with so many people who have helped us in so many ways over the last two and a half years, and wonderful to be able to watch them shower Mina with their love in person. I was a bit apprehensive about the trip, not for any particular reason but probably just because things have been going so well. Don't want to upset the apple cart. But the trip was necessary in so many ways. We are already looking forward to the next one in mid-July.

Day +365 is this Saturday and is coming up quickly. We are planning to mark the occasion with a trip to the Mt. Shasta area -- our donor sent a letter with peace written in about 300 languages in it, one of which was Wintu, the language of native Americans in the Mt. Shasta area. The Wintu word for peace is Mina. So we thought that would be a nice way to commemorate the anniversary. After we return there will be lots and lots of tests scheduled. I will post details when I get them.

To everyone who helped make our trip to Washington so special, thank you so, so much! And to everyone who has supported us, both in person and from afar, over the last year and more, thank you too! I have no doubt that we wouldn't be where we are today if not for everyone's efforts, and we will forever be in your debt.

Day +352: Happy Easter!

Logging in from Lake Stevens to say what a wonderful time we are having on our trip so far. We got to the airport OK Thursday, but not without some adventure. Mina had been having diahhrea all week, and Thursday morning began to develop a red rash on her back and upper arms. It didn't look too serious, but we thought we'd better call anyway. The doctors wanted to see her, of course, but by this time it was nearly noon and our flight was leaving at 2:00 PM. Dr. Sharma asked me whether we could get on a later flight, but I told her I could be at the clinic in ten minutes. She's new to the service and doesn't know we live just down the hill so she seemed kind of shocked, but finally she said it might take her a little longer than that to get there from the floor. So we ended up having the taxi wait outside for about 15 minutes while Mina and I ran in. Dr. Sharma said the bumps look like bug bites, and in any event not like GVHD, so no worries there. And we ended up getting to the airport in plenty of time.

Grandma Lyn picked us up. Mina gets this mischievious sort of look when she's really pleased with herself, and that was the look she got when she saw Grandma. It was very cute. Since then we've mostly been visiting with Keri's family. Keri's mother has eight brothers and sisters, and they've all been praying for Mina Brigitta all this time. They are a really neat and supportive family. Brent also has all of his family in Lake Stevens, and they've sort of adopted us. I remember how thrilled they all were when they first met Mina Brigitta. I felt like I was the father of a rock star even then. This weekend Mina Brigitta had a crowd around her almost everywhere she went. It's really overwhelming and gratifying how much we've been supported. The people here are the reason Teri could come and help take care of us, because there was no shortage of volunteers to help care for Nicholas and Kennedy for a few days. This trip is for them as much as it is for us, to say "Thank you!" and "Look at how far you've helped us come!"

Mina is handling the attention pretty well. She's kind of a shy kid, and she was a bit out of place here the first couple of days. Friday I was trying to put her down for her nap, and she wanted me to rock her to sleep, as she sometimes does. Teri and Brent don't have a rocking chair, so Mina was crying and moaning and saying she wanted to go home. We finally found a swivel chair that was acceptable and got her down. It wasn't long after she woke up that she was saying how much she likes it here and she doesn't want to go home. By Saturday night was running around giggling, and tonight she wanted to go to sleep in the "yittle bed" instead of in the chair.

Isaac is often the center of attention too, as the littlest one around. He's a bit more at home in the spotlight, but he's going through a bit of a shy phase these days, especially when he's tired. He has truly fallen in love with Auntie Teri. He now prefers her to both Keri and me, so she's had to hold him a lot all weekend. She doesn't seem to mind, not even when she's trying to get the house ready for an Easter party for 50 people. It's funny though: he's not saying "Auntie" or even "Aunta". He calls her either "Gamma" or "Amba"! When he's not in Teri's arms, he's mostly running around the house investigating something or other. I think just about the only time he's sat still has been when he's been allowed to sit in the car and "drive", which he's been doing quite a bit of.

We have a busy busy week planned. Keri is taking the kids up to Guemas Island to see Zeedie and Russell tomorrow. It sounds absolutely wonderful, but unfortunately I have to work so I'll be staying here. Tuesday we're going shopping in Seattle, Wednesday is Mina's birthday so we'll be having a small party either here or at the Children's Museum, Thursday we're going to Olympia to see my old work colleagues. That leaves Friday unplanned, and Saturday we're flying home. This trip is so necessary in so many ways, but I have a feeling we'll all be glad to get back home Saturday.

We did get some good medical news right before we left: the results of the latest donor engraftment study came back, and she's still at 100%! I don't know why we'd been so worried; I suppose probably because the stomach bug had set her back a bit. It's nice to be able to relax a bit now. I usually give myself about two weeks before I figure the test is outdated again.

Day +346: Getting ready for our big trip

We're starting to get pretty excited around here. Yesterday I was telling Mina about our big trip coming up, and it took me about five minutes to list off all the people she was going to see and all the things we were going to do. She listened with rapt attention, and when I finished she said "Again?" wanting me to tell her all about it again. We fly out for Seattle Thursday at about 2 PM, returning Saturday, 4/22. We will stay at Teri and Brent's new house in Lake Stevens, which they've owned for nearly a year and which we haven't seen yet. Besides grandparents and aunts and uncles, Teri and Brent have an Easter get-together every year where we'll see lots of others who have been praying for Mina Brigitta over the last year. We're planning a daytrip to Guemas Island on Monday to see Zeedie, and of course we'll have a little birthday party for Mina on Wednesday. Thursday we'll visit my old colleagues in Olympia. Lots and lots of excitement. I hope the kids will tolerate the break in their routine.

We got some great news today just in time for the trip: Mina Brigitta's B-cell function has recovered to normal! This was the last test they were waiting for to pronounce her immune system fully recovered! So now, at least in theory, she has a normally functioning immune system. I suspect this means some vaccinations are in store pretty soon, but we'll see what kind of schedule the doctors lay out for her. They will now discontinue the IV immune globulin she's been receiving monthly, which is nice because the infusion takes a few hours so it means a lot less time in the clinic. This will mean the only medicine she is still getting is aspirin, of all things, for the stenosis. We were chuckling about that with Amber tonight, that the only thing she's still getting for her BMT is aspirin.

There will be a whole bunch of tests scheduled once we get back with her one-year anniversary approaching on April 29. They'll want a whole battery to compare to her baseline tests from last year. Hard to believe that date is approaching. Keri gave the BMT team the permission sheet to allow the donor to contact us, if he wishes. After the beautiful letter he sent, we're eager to meet him and also very hopeful that he'll want to do that.

The kids have had some stomach issues over the last week or so, with some vomiting and diahrrea, though no fevers and their spirits are still pretty good. These things are always worrisome with Mina, so Keri is planning to call Dr. Loh tomorrow and maybe take her up to Tuesday clinic. Then again, with her B-cell result maybe Dr. Loh will say to take two aspirin and call her in the morning.

An interesting story about Isaac this week. He's been talking a lot, and he can repeat things you say to him very clearly. But you're never sure how much of the meaning he's getting. Anyway, the other day I was reading the "Baby Beluga" to him, and when we came to the picture of the puffin, he said "ka-koh!" I told him it was a "puffin", but he kept saying "ka-koh!" I finally figured out he was saying "cracker", which is the word he uses to refer to breakfast cereal. His favorite kind is the "Puffins" brand from Barbera's. I found it interesting because it shows that he's making connections in his mind, and not just learning the words we teach by rote. He still likes to sing "Uppa bova wowo eye!" and he especially likes it when we sing it together. So we've been singing a lot of duets of Twinkle Twinkle Little Star together. Or sometimes trios, with Mina joining in.

Mina is doing really well with her poddy training. She still sometimes has accidents when she naps, but did just great today even when she had diahrrea. No more diapers now except at night, and even those are usually pretty dry in the morning.