Day +793: Summer dance camp and other stories

Mina and Isaac are on summer vacation from their preschool, so Keri is finding other activities for them. Last week Grandma Judy and Grandpa Monte were here to help entertain them. The kids had a ball. They really love all of their grandparents. At some point toward the end of the week, Isaac was talking to Grandpa, and he said "I want you to stay here for a long time."

Grandpa was getting a real kick out of Isaac. All week long Isaac was running around the house, singing and banging his tambourine, picking up his guitar and pounding the strings, then putting it down and grabbing the harmonica, then running to the back room singing and dancing, all with this goofy grin on his face. At one point Grandpa just shook his head and said "I think he's the funniest kid I've ever seen." He's definitely very confident in his home environment, though he can still be a bit shy in public. He really hasn't slowed down with the love of music. He plays all of the instruments in our house almost every day, and he's constantly singing. His guitar playing style is pretty amazing. He sticks his left leg forward and balances the guitar on his thigh while he strums with his left hand. It's exactly the right stance, and in fact several of the NPG parents have commented on how he holds the guitar at school. Mina gets to play it now occasionally, but she doesn't really know how to hold it or how to strum it. Isaac can really get a lot of sound out of his little guitar with his confident strumming. Now, that isn't such a good thing because it doesn't actually sound that great and it's impossible to keep the little strings in tune. We're trying to decide at what point we could trust him with a more expensive and better sounding instrument. He actually does pretty well with his guitar -- it's a little banged up, but he's pretty much gotten the message about not using it for anything else.

With all of the dancing that has been going on at our house, we were curious to see how the kids would enjoy dance camp. They went last week every day for three hours, from 9:00-12:00. Every day they came home exhausted from all the physical activity, which is great except they are chronically a bit short on sleep, and I had a crazy busy week at work so Keri was stuck at home by herself much of the week with two very tired kids. They did like the camp -- the teachers were really nice, and the kids liked getting dressed up in their dance clothes every day. Mina wore leotards and tights, of course, with pink ballet slippers, and her hair was supposed to be fixed up every day. A couple of days the teachers helped to fix up Mina's hair. Isaac wore black footless tights with a white shirt and black slippers. Both the kids say they really liked it, and both of them say they would like to go again, but I didn't get that many stories about what they actually did. I know they did stretches and exercises in the morning before they danced, then they danced for 45 minutes or so, then had Goldfish and apple juice for a snack and did crafts for a while, then danced for the last hour. But we haven't yet seen any new moves they learned at camp or anything. The teachers liked our kids, and said they would enjoy seeing them in class in the fall. They were struck by how much Mina helped Isaac to stay in line, follow directions, etc.

We had a minor medical scare with Mina a week or so ago when she got a mild fever that last two days. She seemed to be feeling pretty decent for the most part, but she wasn't eating quite like normal and she was definitely tired and run down. We had already noticed how seldom she's had any kind of illness since coming out of the hospital, and we're thankful that she seems to have been transplanted with a strong immune system. But the absence of illness makes a fever seem all the stranger. She was pretty tired the Saturday before dance camp, and when I asked her how she felt, she said "I feel a little bit good." The next day she was obviously feeling better, and when I asked her she said "I feel a little bit sick."

But the fever wasn't really the scary part; the other thing that happened is she got a rash on her forearms and hands that looked a lot like the GVHD rash she had when she was so sick. Monday night it had spread to the top of her feet, and since the hands and feet are commonly the first place for a GVHD rash to show up, I made Keri take her in. Dr. Kerper saw her, and said they weren't worried about GVHD this far out, which was good to hear. The rash went away after a few days, and Mina is doing great now on all fronts.

Mina and Isaac have this game going now where Mina is the mother hen and Isaac is the "chickie". Grandma and Grandpa took them hiking, and they found a great place to play it: a circle of cut stones that the kids immediately called their "nest". Isaac got down on his knees and was the "egg", and Mina actually sat on him until he hatched. They've played it several times at home since then, and tonight Mina was pecking worms out of our living room floor with her nose and then bringing them to Isaac to eat.

Grandma and Grandpa spend a lot of time fixing things while they're down here, things that Keri and I don't have the time or the ability to get to. Grandma Judy is the expert at fixing broken toys and books, and she's gotten quite a reputation. One day Mina was watching her in awe, and she remarked to Keri, "Can Grandma Judy do anything?" Then tonight, Mina was traumatized because a plastic horse that she got as a door prize at birthday party yesterday had broken a leg. It was just a cheap toy; I watched two of them break at the party, and Isaac's broke on the way home. But Mina takes these things very seriously, and she was distraught. She burst into tears and wailed "I want Grandma Judy to come and fix it!" So we tried to call Grandma Judy, but as Grandma was coming to the phone, Mina dropped the horse on the kitchen floor and it broke into about five pieces. Mina shrieked and then cried these deep sobs that she cries when her feelings really are hurt, so we had to hang up the phone. Mina really has very deep reservoirs of emotion.

The emotion comes out all the more readily when she's tired, of course. Last night we were out late at Walt, Blaire and Devon's house. They had a ball playing with Devon, but we didn't leave until almost 10:00. Isaac fell asleep after about five minutes in the car. Mina didn't fall asleep, but as we were coming into our neighborhood, I heard kind of a strange voice from the back seat saying "I'm supposed to be asleep." I said "What?" and Mina said "I'm supposed to be asleep by now. It's very late." Which was definitely true, but it was still a bit surpising to hear it come from the back seat.

Kids start summer camp at NPG Monday. Teacher Julie will be there, but there will be another teacher as well and some new kids, which will be good for Mina. Looking forward to seeing how that goes.

Thanks for checking in.

Day +782: Strep family

It turns out that Mina's rash and gunky nose were probably caused by a strep infection that migrated from her throat to her sinuses. Now the whole family is on antibiotics. Keri was the first to be diagnosed. She was feeling crappy a couple of weeks ago and had a swab taken. UCSF finally called her back a week later and told her she was positive for strep. Isaac was beginning to get a rash and gunky nose too, and when he said his penis was hurting, Keri took him to the urgent care center and convinced them to check for strep, even though he didn't have the classic strep symptoms. Sure enough, he was positive too. That plus the gunky nose was enough for Dr. Aicardi (the kids' pediatrician), who prescribed a broad spectrum antibiotic for Mina because of her rash. I think that was Wednesday morning. Then I started to feel crappy Wednesday night, and was miserable by Thursday morning. So I went to urgent care at UCSF, where they took one look at my throat, gave me a prescription for penicillin, and shoved me out the door. So now we're all taking our medicines. The kids' meds taste good, so they've been very good about it. It definitely brings back some memories, giving Mina oral meds with a syringe. For me anyway. Hard to tell whether she remembers anything.

I was just starting to feel better by Friday afternoon, which was a good thing because last weekend was the end-of-year campout for Neighborhood Playgarden, the kids' school. We went to Samuel P. Taylor State Park, which is a nice little spot in the redwoods on the way to Point Reyes. The school had six adjoining campsites, in which there were about 12 tents. That was most of the school, and some of those who didn't make it came up either for the evening on Friday or the day on Saturday. The kids had an absolute blast. Mina was busy most of the weekend running around in a pack with Maddie, Riley, Annika, and Cassidy. We went on 4-mile hike up to a waterfall on Saturday, and that was the most time I spent with Mina all weekend. Teacher Julie organized the food, so we didn't have to worry about anything. We had a pancake breakfast and gourmet salmon dinner on Saturday, and eggs with salmon Sunday morning. There were campfires both nights with singalongs and story-telling. Teacher Julie is great at telling stories, so that was really fun. It was also nice to get to know the other parents a little better. There are some very interesting people with kids at NPG, so we're lucky that way.

Sunday the kids got to play in the creek for a while. Mina was off with her friends, so I didn't see it, but they all came back talking about how a butterfly had landed on Mina! It was a large, whitish Monarch butterfly, and it landed on Mina's shoulder and walked around there for a while as Mina held still. Mina was wearing a bright blue shirt with some stitched flower decorations on it, so perhaps that's why the butterfly decided to land there. Unfortunately, no one had a camera, but they were all pretty thrilled by the event.

I wish I could remember exactly how she put it, but Mina basically told me that the camping trip was the most fun she had ever had. I can see why she would say that. It really was fun. Isaac had a great time too. He was playing with the bigger boys a bit on Saturday, though he can't really keep up with the four year olds. Unfortunately he was sick again. He threw up in the tent on Saturday night, and felt generally pretty bad with a mild fever on Sunday morning. It was almost a replay of Camp Okizu, so it was a little weird. He was fine by Sunday night, though, and is showing no ill effects now.

This week Grandma Judy and Grandpa Monte are in town. They came on Monday and are staying until next Monday. Today they took the kids up to the top of Mt. Tamalpais. They had a nice time, and were impressed at how well the kids hiked. Mina is strong as an ox, of course, and Isaac is becoming a good hiker too. Mina had her first swimming lesson on Tuesday. Grandma and Grandpa watched her while Keri took Isaac for a haircut. Grandma said she didn't stop grinning the whole time she was in the water. After about 20 minutes, she jumped off the side of the pool and put her face under the water the way the teacher had been trying to get her to do, and got the high five from the teacher as a reward. She just loves swimming, so this is going to be great for her. Next week the kids go to dance camp for the entire week. That should be fun for both of them. Isaac just loves to dance around the house with his tambourine or his guitar or a drum, and Mina of course has been asking to go to ballet class ever since Christmas.

All is well here, as you can see. Mina just seems so grown up these days. I don't know what it is exactly, maybe just that her issues with Maddie at school have been worked out, but she seems very calm and self-possessed. She knows that school is over, and corrects me when I say that she goes to school. School is over now, so she says, "No, I used to go to school." I thought she might be sad about it, but she really seems to be taking it in stride.

Day +773: Donor Letter

Things are going great here. Mina Brigitta has had a horribly stuffy nose for the last week or so, accompanied by a rash on her face and wrists (but nowhere else). Keri did start using a new sunscreen recently, so that's a suspect, but it seems more likely that she's had some kind of a mild virus, though she never had a fever. Isaac's nose has was pretty stuffy this morning and he had a couple of lesions on his face, so that seems to be the dead giveaway. Nothing to affect their energy or appetite, though.

We did get some good news on the medical front today: Mina Brigitta's thyroid function tests came back normal! Dr. Horn has been anticpating some endocrinological issues due to the radiation Mina received, and they still can show up later. She had been intending to refer us to a specialist, but perhaps she'll hold off for now. Still, it's great news that nothing is manifest at the moment. One victory at a time.

The kids have been doing all kinds of cute things lately, and I keep making mental notes as they happen, but when I sit down to type them up late at night, I can never recall them. I really need to get a Blackberry or some kind of PDA so I can take real time notes, because there have been more than the usual number of things I wanted to remember down lately.

One thing I can remember is that Isaac likes to go and sit with someone else during mealtimes. Sometimes Momma or I will let him sit on our lap, if he's really tired and not eating enough so that he won't complain of hunger before bed. But sometimes he wants to go sit in Sissy's chair, and she lets him. So he crawls up next to her and puts his head on her shoulder. Sometimes they play that he's the baby and she's the Momma. They both kind of like those roles, so it works out pretty well. Mina kisses him on the head and calls him "Sweetie". I'd chase him back to his own chair if they weren't so dang cute.

Sean Rodriguez was kind enough to send me an electronic version of the letter he sent us in February, so I'm posting that below. He asked me to blank out the names of his friends for their privacy, so you'll be able to see where I've done that. I think you'll see why we feel like he's a long-lost family member. Here's the link to the letter he sent with his stem cells, in case anyone is interested in going back and looking at that: http://minabrigitta.blogspot.com/2005_04_01_archive.html. He really nailed our Mina Brigitta with the thing about the bright spark. I've got some email correspondence that I would like to share as well, but that will have to wait until the next entry.

We had Meghan and Dave over last night, and Mina Brigitta was wearing the earrings Sean sent and telling Dave who they came from. I'll try to capture her voice as best I can: "They're from Sean Wod-WEE-guez. He's da man who gave me his BLOOD, p'cuz MY blood was making me SICK, so he gave me HIS blood so I wouldn't be SICK anymore, and wasn't that NICE of him? I have his NAME. Here's my name: Mina Brigitta Wod-WEE-guez Olsen Olson!"

Here's the letter:

The Olson Family
236 Grattan Street
San Francisco, CA 94117

Dear Arne:

Let me start by apologizing for the tardiness of this letter. I could say that it was because I simply did not have the time to draft a response, but that would be a lie. Although I have been busy, I could have set aside a moment or two to jot down some thoughts. What it really came down to was telling myself that I could do it. Over the past few months, I had to draft up papers on everything from Krishna to the historical settlement of Phoenix and from American landscapes in film to Anabaptist beliefs. All of these papers combined were easier to compose than this one has been. I think a part of it has to do with feeling worthy and of being a small part of Mina’s life. While I am certain that most of your friends and family know of the events surrounding Mina (the blog as evidence) and the donation, the same cannot be said about mine. There are only a handful of people that know (most of whom had to know for medical/insurance reasons), as I am normally a very private person. Though I am congenial and extremely social, I tend to keep the special moments in my life very close.

When I opened your letter and saw Mina’s face for the first time, (the one dated Feb 04) sitting with a smile so large that it shined right through her pacifier I was overwhelmed, and immediately broke down in tears (thankful I was alone as I am sure they would have thought I received bad news). It was inspiring to see such happiness in spite of such hardship. It is very difficult for me to view her pictures, or even think about the idea that somehow I have aided in the process that allows her to continue to smile.

Even now, I find it difficult to read or think about your letter without turning into a blubbering fool. My emotions over Mina’s success can never match those of you and your family’s, but they are strong nonetheless and for various reasons. When I read your letter and looked at the photographs they made me feel…saved. Although I was raised a Catholic, I am not now nor have I ever been a religious person. I do not have any set beliefs and have found it difficult to relate to any established dogma. I have spent a good portion of my life questioning its value and debating the purity of my soul, and if there is an afterlife would I be worthy of a better place. If you were to ask my friends, they would say I have about a 50/50 shot of going to either place (depending on who you ask).

Although I have been a platelet donor for nearly a decade I had only been on the National Bone Marrow Donor list for about 3-4 years when called upon to donate for Mina. To be honest, I initially found it odd that so many people made a big deal over my donation. When I was asked to donate my biggest concern was that I was going to have to take a midterm early, complete a project sooner, or miss a few days of class. It never crossed my mind nor did I care about the physical inconvenience to myself. If anything, I felt lucky and honored to be chosen, especially after learning of the low rate of matches. As the day approached and I was filling out papers, my case manager (Debbie Wells) told me that although I could back out at anytime, there was a point of no return for Mina. I found it inconceivable that anyone would go that far and then back down. I do not mean to be dramatic, but honestly at that point I figured if even with the remote chance of something going wrong with the procedure on my end, it would be worth it as long as Mina survived. I had lived a very eventful life and if it was meant to end in that way, then so be it. Fortunately, everything turned out well and eventually we made it to the one-year mark and were offered the chance to learn more of each other and our situations.

I am going to attempt to offer you a snapshot of my life in a single (but very long) paragraph: I was born in Berwyn, IL (a suburb of Chicago) in 1968 and lived in IL until I graduated from grammar school. In 1982, my family and I moved to Scottsdale, AZ, where I continued to live until 1989, when I decided to move back to Chicago. The same year I returned to IL, two events occurred that forever changed my life. First, I was struck in the head with a baseball bat (not by accident), which placed me in a coma for a week. The effects of that injury I still feel to this day. Second, I met XXX, who I later married. Together we had a daughter, Renee Alaine. Renee was born on my 22nd birthday on Dec 22, 1990. I joined the U.S. Coast Guard in Jan of 1992 and was enlisted until Feb 2003. During that time, I had the pleasure of being stationed in various locations across the country (CA, IL, LA, MS, NJ, and WI). Unfortunately, my job was not conducive to my young marriage and I divorced from XXX in 1996. My last tour of duty found me back in the Chicagoland area. While in Chicago, I took care of my maternal grandmother and found time to obtain my AA. At a Squirrel Nut Zippers (jazz) concert, I met a woman named YYY and began dating her in 1997. After receiving her BA in Business, she moved to NY in 2001 to attend The Culinary Institute of America. I visited her while we were apart and grew to appreciate the area of the Hudson Valley. For a plethora of reasons (personal, political, career ops), I requested a separation from the Coast Guard. Following my separation, I joined YYY in New York while she completed her studies at the CIA (she now works for them full-time). I enrolled in the State University of New York at New Paltz (geography major) and I am in the process of completing my final semester this spring. In addition to my studies, YYY and I are renovating our 1920’s cedar shake home overlooking the Hudson Valley. In my spare time I enjoy everything that has to do with being outdoors - hiking, biking, photography, etc (sounds like something out of a commercial I know, but its true).

Well that briefly is everything in its most condensed form. I hope it gives you a sense of who I am and where I am from. I am sure that some psychologists would love to break it down and determine why I chose to highlight what I did, but I do not think it needs to be looked at that deeply.

I am including two CD’s, one that has a series of photographs, set to a song I enjoy (play this one first), while the other is a photo album that has brief captions to the same selection. These photographs are the closest thing to understanding me (in the most succinct way). You can say they represent everything and everyone that I hold close to me. I am honored to be able to include Mina. I hope to learn more about her, you, Keri, Isaac, all her “Anta’s”, Grandma Lyn, and the rest of her family (more than can be obtained through Mina’s blogs) as time goes on.

Thoughtfully,

Sean


Here's the letter we sent him in August 2006:

July 25, 2006

Dear Sean:

My name is Arne Olson and I’m the father of Mina Brigitta Olson, who received your bone marrow stem cells in a transplant on April 29th, 2005. I am writing on behalf of Mina Brigitta, her little brother Isaac, and my wife Keri to thank you for the gift of life that you have given Mina Brigitta. Your awareness and generosity saved our girl’s life, and while she still has a long road ahead of her, today Mina Brigitta is a sensitive and compassionate three-year old with a great belly laugh who loves sand, her baby dolls, and her little brother. Words will never be able to express the gratitude that we feel.

Mina Brigitta was diagnosed with acute myelogenous leukemia, or AML, in January 2004 at eight months of age. AML is a very aggressive form of childhood cancer that strikes about 500 children each year in the U.S. We were given long-term survival odds of approximately 60%. She was treated at the University of California, San Francisco, which is a leading institution in pediatric hematology/oncology that happened to be located a few blocks from our apartment. She received three rounds of high-dose chemotherapy under the standard protocol used for infants without a matched sibling bone marrow donor. She tolerated her treatment very well, and her cancer seemed very responsive, so the mood was optimistic when she finally finished her treatment in June 2004. Our son Isaac was born October 1st, and we were hoping to leave our hospital days behind us.

Unfortunately, the cancer returned and Mina Brigitta was diagnosed with relapsed AML in January 2005. The preferred treatment for “advanced” AML is more chemotherapy to get the cancer back into remission, followed by total body irradiation and a bone marrow transplant. A search of the bone marrow registry eventually turned up your name, and the transplant date was finally set for April 29. This time we were given long-term survival odds of 40-45%.

Transplant day was a sunny and beautiful day and we were already feeling positive and optimistic despite the odds, but I have to tell you that your letter really brought a warm, happy glow to the room. It was read and reread by the transplant doctor, residents, fellows, nurses, our oncologist, family and friends, and ourselves. The veteran transplant doctor said she only remembered one other time when the donor sent a letter. Yours connected with us in a very real way. You might be interested to know that I once had a room where I invited friends to help decorate the walls with paint and mixed media, and one of the motifs that emerged was the word “peace” in different languages. Most importantly, we noted that the Wintu word for peace is “mina”. When we researched the Wintu language, it turns out the Wintu are a Native American tribe in Northern California!

Mina did very well at first, but about a month after the transplant she became gravely ill with Grade IV Acute Graft-Vs.-Host Disease (GVHD). GVHD occurs when the donor’s white blood cells attack the host’s tissue as foreign, in spite of the tissue typing that is used to select the donor. GVHD has the benefit that the immune response from the donor cells can help to kill off any cancer cells that remain after the chemo and radiation. However, about 15% of transplant patients die of GVHD, and Grade IV is fatal in 85-90% of cases. Mina Brigitta spent a week in intensive care and there were a couple of weeks where it wasn’t clear which direction things were going to go, but her doctors made the right decisions at the right time and she pulled through with the help of some new treatments.

We were discharged from the hospital July 5th, and she’s been on a long, slow road to recovery ever since. She was on very intense medications to prevent a recurrence of the GVHD, but those medications suppressed her already-weakened immune system so she had to wear a surgical mask while out in public, couldn’t be around other kids much, and had a number of other restrictions during the first several months. But her immune system slowly recovered and the GVHD stayed away as they carefully tapered her meds. Most of her restrictions were lifted in early November when her “T-cells” showed normal functioning, and they took her off all meds in April, just shy of the one-year anniversary of her transplant.

Now she’s gained all of her weight back, has a head full of curly hair, and you wouldn’t have any idea from appearances that she’s had to deal with such intense medical issues. She’s running and playing and laughing and doing all the things kids her age are supposed to be doing, and that’s all we could ever have hoped for. We don’t really know what’s in her future, but we do know that the odds were against her making it this far, so we’re just thankful for every moment we get to spend with her. These last several months have really been a blessing, and we will always treasure them.

I hope you enjoy the enclosed pictures of Mina Brigitta and our family. And you may have already discovered it, but I began maintaining a weblog in January 2005 at http://minabrigitta.blogspot.com. You are welcome to browse there and read the daily entries if you are interested. If you would like to contact us, please feel free to write us at the above address or by e-mail at arneolson@yahoo.com. We would be very interested to learn more about you and your decision to donate stem cells if you are willing. I understand that the stem cell extraction process can be quite painful and disruptive. That you would make this sacrifice on behalf of someone that you might never know says a lot about your character and generosity.

We recently learned that donor stem cells can be found not just in the recipient’s bone marrow but throughout the body, most interestingly in the brain. A part of you is truly living on in our daughter, and we will always cherish and respect this gift that you gave her. It is our hope is that the joy that you have given us (and the others who know and love Mina) will find its way back to you in innumerable large and small ways.

Sincerely,

Arne Olson (for Keri, Mina Brigitta and Isaac)