Day +814: Goodbye Waah Baby Number Two!

Saturday night was a very eventful night at the Olsen-Olson household. We had dinner guests, which was a big event in and of itself. The guests were the Keenans, Terry, Delia, son Ronan (4) and daughter Aoife (pronounced "EE-fah", 2). Ronan attends Mina and Isaac's preschool, and he's a sweet boy. But the occasion for the get-together was so that Mina could give Waah Baby Number Two to Aoife. This came about when I was chatting with Delia while we were at the June camping trip. Delia mentioned that Aoife had never had a baby doll. Of course I had to tell her the story of when Mina went to the playroom at the hospital when she was 9 months old, saw a baby doll there, picked it up immediately and hugged it, and didn't want to let it go. Keri and I just looked at each other and said "Duh -- we have a girl!" Anyway, I also told Delia that Mina had lots of babies, more than she knew what to do with, and that she had already given some of her surplus away: Home Baby to me and Other Waah Baby to Isaac. I said I would ask Mina if she would like to give a baby to Aoife.

Later, when we got home, I asked Mina about it, and she said sure, and she went to the back room and picked out a doll, along with some clothes and a little fabric. When I looked at which doll she had picked out, I sort of gulped and asked her if she was sure. She had picked out a baby that she called "Waah Baby". This was one of the several babies that Keri bought for Mina after the original Waah Baby's disappearance. The doll looks a bit like Waah Baby, and Keri said Mina was staring at her for a long time in a shop window. But when we got her home, Mina never played with her very much, and when Lily came along last Christmas, she was the one who became Mina's special baby in the same way Waah Baby had been. So I typed up a letter describing Waah Baby's history for Aoife, and last night the Keenans came over for the handover ceremony.

All went well until the end of the evening. Mina had been happy to give Aoife the baby, and they had played babies together earlier in the evening. Aoife was very happy to get Waah Baby. The first thing she did was put the baby in Mina's stroller and wheel her around the house. Apparently it had been a big deal in the Keenan family as well, and even the grandparents back in Ireland knew what was going on. The Keenans were ready to leave around 10:30 PM, and Mina began to get teary. She gave Waah Baby a last hug, and jumped into my arms and buried her head in my shoulder. I asked what was wrong, and she said she was going to miss Waah Baby! It's funny, because Waah Baby had been in the closet for a month with the other stuff for Aoife. And it probably had a lot to do with how tired Mina was. But she cried for 20 minutes in the bed with Mama. I felt bad, hoping that I hadn't overestimated or taken advantage of Mina's generosity. Mina was fine this morning, and I know she won't miss the doll on a day to day basis. But she did say that she wants to get a new Waah Baby now. We can certainly do that for her, if that's what she really wants.

I had intended to spend most of this post writing aboug Isaac, because he's just been cracking me up lately. Today we were talking about what Mina wants to be when she grows up: a mama, a doctor that takes care of old people, a princess, and a ballerina. She always says them in that order. I asked Isaac if he wanted to be a garbageman, and he said "I'm already a garbageman!" Can't argue with that. Our bed is his garbage truck. He's always grabbing random stuff, running to the bedroom, and *heaving* it up onto the bed, exactly like the garbageman does. He also likes to take the stroller and the shopping cart, one in each hand, and wheel them toward the bed. He always tips them back so they are running on two wheels, again exactly like our garbageman does with our two cans full of garbage and recycling. We have a very nice garbageman, who always waves to Isaac in the window and gives him a big smile.

Isaac is also a plumber, ever since we had one come and fix our kitchen sink. The plumber apparently had a blue bag for his tools, because when I got home that day Isaac was taking the little wooden tools he has and placing them in his own blue bag (at least that's what he called it). He's still fascinated with balls and bats, and tennis rackets. There is a tennis court next to the local playground, and the kids sometimes ride their trike around next to the court. The other day Isaac couldn't decide if he was the garbageman or the "tennis racket guy". He finally decided he was a "tennis racket garbage man."

Mina graduated from her swim class, and got a nice certificate from her teacher. The teacher said she was "fun to have in class", and recommended that she move on to the next level. I think Keri is intending to take Isaac to a parent-child swim lesson in the fall.

The other thing I wanted to mention about Mina in my last posting was about her seeing her dear friend Amber. Mina retains a deep and abiding love for Amber that she really doesn't have for anybody else, with the possible exception of Auntie Teri. Mina was so excited when Amber came to her birthday party, and when Amber had to go, Mina buried her head in her hands for a minute while she digested the news. One day a while back, Keri was taking the kids from the Marina playground up toward Pacific Catch, their favorite seafood restaurant in the Marina District where they used to go with Amber (and which was the scene of Waah Baby's disappearance). Mina got this dejected look on her face and said "I'm never gonna see Amber again!" Amber must have felt the vibes, because we got a call a couple of days later, and they all got together at the Marina playground. Keri said Mina was so excited. Not in a hyper kind of way, but just thrilled.

Keri had an appointment with the Children's Health Council in Palo Alto last week. This is a group that does cognitive testing on kids that have had severe health issues. We have been trying to get a baseline neuropsychological evaluation for Mina for nearly two years now, but there appears to be no one available to give the exam. None of the UCSF patients are being examined, and when we asked about having her examined at Fred Hutch in Seattle, they said they only examined their own patients. The CHC sounds like a great organization, but they don't take insurance and the exams cost something like $1800. It's important for us to get Mina examined, and we may end up just trying to save up our money and paying for that. The woman Keri met with said there was basically no question that Mina was going to have issues. According to her, cranial irradiation at a young age is worse for girls than for boys because of the patterns of white matter development. But she said we might not notice anything for a while. She said around 3rd grade is a time when kids thinking undergoes a change, and that's when we might notice some issues cropping up. It's very sobering to think about, but we have sort of been expecting it and it's been a source of constant irritation that we have not been able to get Mina the tests that she needs. I spoke with Dr. Horn last week, and she basically said there was nothing she could do. She suggested we try to get some testing through the school district.

The family is off to the Northwest this week, for over a month. We'll all be driving up together, probably leaving Wednesday evening. We need to be in Southwest Washington by Friday for Keri's family's annual reunion and camping weekend. I'm coming back here August 6th, then heading back up again a couple of weeks later. It will be nice to see everyone and to enjoy some of that beautiful NW summer, although my work schedule is once again going gangbusters so I won't be able to take the full week off. Next posting will be from Lake Stevens next week.

Here is the letter I wrote for Aoife. When I read it aloud to the assembled crowd, Mina was standing in front of me saying "Yep" and "That's right" throughout as she recognized the pieces of her life story.

June 17, 2007

Dear Aoife and family:

When I mentioned to Mina Brigitta that Aoife didn’t have a baby and that she wanted one, Mina went right to her room right away and picked out a baby to give to Aoife. Mina said we have “too much babies” at our house and she can’t take care of them all, so she picked out a very nice baby for Aoife and is sending along a few things that Aoife can use to help take care of her. The baby that Mina picked out for Aoife is called “Waah Baby”, and Waah Baby has a very interesting story that I wanted to share with you.

A long time ago, Mina was very, very sick. She had a kind of cancer called leukemia, and she had to spend a lot of time in the hospital. While she was in the hospital she had a very special baby. The baby would cry when you pressed her hand, and whenever she cried Mina would pick her up and cuddle her and say “Shhh.” But the baby didn’t have a name at first, because Mina was too young to give proper names to her babies.

Mina Brigitta’s longest stay in the hospital was right after her second birthday when she had to get a bone marrow transplant. That was when she got another person’s blood to replace her own blood, which was making her sick. Mina spent 77 consecutive days in the hospital, and she was very sad because she missed her home. She used to point to the door of the hospital room and say “Out!” But she wasn’t allowed to leave the room because she had no immune system and the doctors were worried that she would get an infection.

One of the ways she used to express her sorrow was by drawing pictures, with the help of the adults that were caring for her. She used to ask us to draw “waah babies”, pictures of babies crying, or “waah apples”, pictures of apples crying. When we were finished, she would point to the door and say, very firmly, “Out!” Then we would have to take the picture of the waah baby or the waah apple out of the room. By the end of her hospital stay, we had quite a collection of waah baby and waah apple pictures. It was around that time that Mina’s special baby began to be known as “Waah Baby”.

Waah Baby was a very well-loved baby. Mina would change her bandages, give her shots, connect tubies to her, and play all kinds of doctor and nurse games. Waah Baby was with Mina every day through some very hard times, and she was with us when Mina finally came home from the hospital. Unfortunately, a very sad thing happened last September: Waah Baby was left behind in a restaurant, and was never found again. Mina missed Waah Baby very much, but she never believed that Waah Baby was really lost. She used to say “I can’t find my Waah Baby, but she’s not lost. She’s in the house somewhere.” But of course, Waah Baby really was lost.

After the loss of Waah Baby, Mina received many other babies as gifts, and she played with them and took care of them a little. But it wasn’t until she got Lily three months later that she finally found another baby that was special to her in the way that Waah Baby was. That’s why we have so many babies at our house, and why Mina is happy to give Aoife one of her babies.

The baby that Mina picked out for Aoife looks like the original Waah Baby, and Mina calls her Waah Baby and believes that she is the original Waah Baby. But she’s not really the original Waah Baby and Mina doesn’t have that special bond with her that she had with the original Waah Baby. Still, I asked Mina twice if she really wanted to give up Waah Baby, and both times she said yes, “because we have too much babies at our house and I don’t really play with her very much.”

We hope that Aoife will take good care of the new Waah Baby. It will be a little bit sad for us not to have a “Waah Baby” around the house, but this is what Mina wants to do. Mina also says Aoife can pick out her own name for Waah Baby if she wants to.

Love,

Mina, Isaac, Keri and Arne

P.S. If you would like to see a picture of the original Waah Baby, you can go to this web URL: http://www.mendozabaseball.com/minabrigitta/bone%20marrow%20transplant/target24.html.

Day +801: All is well, more donor communication

Not a lot of news this time, so I thought I would post the remainder of the Sean Rodriguez communication (see below). All is well here. The kids are in summer camp at NPG on Mondays and Wednesdays, which they are happy about. Mina is still in swimming lessons, which she absolutely loves. She grins from ear to ear the whole time she is there, and she tells me all about how she jumps off the side of the pool and puts her face in the water and gets a high five from the teacher. Isaac is beginning to like swimming too. We went to see Rich, Olgica, Niko and Baby Lenka on the 4th of July, and went back to the kid pool in San Leandro. Both kids had a great time, and when they same to the city to visit us on Sunday, Isaac kept asking if we were going to go to the pool. He was quite disappointed that we couldn't just jot off to San Leandro to go to the pool.

The only health issue is that Isaac has a little virus or something, slight fever, feeling a bit punky, but not bedridden or anything. He keeps asking to go to the "hossibal". He says we drove past his hossibal on the way to Sissy's. He's quite insistent on being included in everything, which is really a good thing with as strong of an older sister as he has. It will be interesting to watch how her story affects him growing up. We've heard some cautionary tales from other families -- one about a kid who was sure he was adopted, because he was the only one of several kids that they didn't have any baby pictures of. Of course, the real reason there were no pictures was because the kid's sister was in the hospital while he was a baby. I could see something like that developing with Isaac, so we will have to watch things closely. I do try to make an extra effort to pay attention to him sometimes.

He's funny, he can be such a chatterbox at times. Yesterday he went down at about 6:00, but then woke up again at 8:30. Keri finally went to bed at nine, so Isaac and I stayed up until 10:00 or so. He just chattered the whole time. I tried to read him a book, but we couldn't get through it because he chattered so much on every page, asking questions, commenting on the pictures, asking the same questions again. I finally gave up trying and put him down next to his mother, and Keri said he was asleep in about 3 minutes. Which is funny, because he wasn't yawning or anything.


Mina is getting stronger and stronger all the time. Teacher Julie was remarking the other day about how strong she is, and sort of wondering what kind of an athlete she might have been. I don't like to think about what might have been, but just like to enjoy where she's at. Her latest trick is sliding down the pole at the playground. She can slide all the way down the pole starting eight feet off the ground! And she can jump on one leg. I don't think it will be long before she's doing the monkey bars.


Otherwise we're busily planning our trip to the Northwest. We're leaving on July 24, coming back about a month later. I'll be flying back and forth to work, of course, but should be able to take some more time this summer. Last summer was a very crazy time at work, and I have a lot going on now as well, but not quite at the same level. We are all looking forward to seeing our friends and relatives and enjoying some of that Northwest summer weather.


Here are some of the early emails between Sean and me:






From: Sean Rod
To: Arne Olson
Sent: Saturday, February 24, 2007 8:58:10 AM
Subject: Finally an email.....



Arne,

I suppose an email is something that should of, or could have happened sooner, but "say la vie". I just read your most recent Mina blog and it hit me that I did fail to mention anything about my ethnic background. I guess I was too focused on apologizing, or summarizing my life. So to get right to it.....

My ethnicity is much like my name. Kind of a half and half mix of European descent. On my mothers side there is Scot-Irish, Swedish, and some native American (Sioux). My fathers side is Spanish and French. My father was born in Puerto Rico, but my grandparents are from Spain and France (relatively near the boarder for each). You could say I am really a mutt, and if you could not tell from the photos my last name normally surprises people. Most have a tendency to comment on how I don't look Mexican. Which forces me to smile and say "Well that's good, because I am not Mexican."

I also wanted to say that although I am private I don't want you to limit yourself on what you would like to speak out about. My reasons for being private are due to feeling guarded and not wanting people to find my "soft side" and think that they can take advantage of me. I have an outward appearance that many friends and family claim is one that looks like I might be mean or be able to tear someone's head off, but that once they get to know me I am much different.

A story that my friend X likes to tell people about me in hopes of enlightening them is a good starting point. Shortened and not as humorous as he tells it....
When X and I first met we were both in the Coast Guard. At the base I was very straight and stern with everyone. I spoke hard and treated my fellow enlisted personal with a certain level of veracity. We decided we would go see a Blueman Group show and head out to a bar. When X showed up at my house he had a picture of me in his head from how I was at work. My head was shaved, I was a "big guy" (not height wise as I am only 5'9) and was "intimidating". When he came in I was in the middle of making a batch of potpourri candles, working on the fabric of an antique chair and wearing sunflower boxer shorts. My place was clean, color coordinated, comfortably light and my shower curtain had paisleys on its face. Instead of thinking I would beat him up at some point, he began to think instead I might rape him. Needless to say, neither of those happened and we wound up being life long friends. The point is that what he saw on the outside is how I keep people away (it really become prevalent after being hit in the head with a baseball bat....I tend to be weary of people and their intentions). Unfortunately my "mysterious" nature tends to feed peoples imaginations and they normally think I have more going on in my personal life than I do. Actually I do have allot going on, but I am not a hitman, I do not work for the CIA, I do not have my body covered in tattoos, I do not attend weird cult meetings, and do not vote republican....crazy stuff people have come up with.

I have quite a bit of reading to catch up on as well as a take home mid-term and a project outline, but I just wanted to offer you some more info after reading your latest blog. I have your number programmed in my phone, and if it would be alright, I would love to give you a ring sometime soon and if I could somehow control my emotions, speak to Mina.

Take care,

Sean


“To announce that there must be no criticism of the President, or that we are to stand by the President, right or wrong, is not only unpatriotic, and servile, but is morally treasonable to the American public.” T. Roosevelt









From: Arne Olson

To: Sean Rod
Sent: Mon, 26 Feb 2007 20:04:52 -0800 (PST)
Subject: Finally an email.....


Hi Sean!

Thanks so much for the e-mail. No worries on the timing and method of your contacting us. As I said on the blog, it's kind of a weird, emotional deal for all involved, and I can totally understand your waiting to deal with it until you knew you were ready. Same reason it took us several months to get that first package to you. Just out of curiosity, do you think you would have initiated contact if we hadn't? I think they were supposed to tell you that we were willing to be in contact, but then again it's not like you're in the doctor's office every month like we are.

I realized belatedly that I neglected to mention the tiara and earrings in the blog entry. They were a big hit. We actually had a little battle because she wanted to wear the earrings outside (everywhere, actually), but I wouldn't let her until we took a picture for Sean Rodriguez, and our camera was out of batteries and we didn't have a spare. We have some pictures now which I will post and can email if you like.

The ethnicity question is more for intellectual curiosity than anything else. Your desciption of your background is about what I expected. From what I've learned about HLA-typing, I think the odds of your matching Mina would be incredibly low if you had very much native American or Mexican blood in you, though it's interesting that you have some Sioux heritage. My dad is just about all Norwegian, and Keri's dad is mostly Norwegian and Danish. She's an Olsen and I'm an Olson and we both look pretty Nordic, so I think we make too much of that sometimes. My mother's side is mostly a mix of French, English and Scots, and Keri's mother is half Dutch, half who-knows-what. The Rodriguez name definitely raised a few eyebrows, but it's not like your first name was Jorge or anything. And I thought it was pretty cool in a way that Mina's donor was totally NOT Scandinavian, at least by name. Defied all expectations, and perhaps struck a tiny blow on behalf of a more universalist view of tribe.

By the way, a funny story about names. Keri and I had a disagreement about what name we should give our firstborn daughter. We had always talked about Brigitta because we love the name, but we began to realize what a mouthful it was toward the end of Keri's pregnancy. In the hospital after Mina was born, we were having trouble pulling the trigger on a name, and we were under a lot of pressure to do so before we left. Finally Keri told me I should name her, so I picked Brigitta and off we went. Keri never felt right about that and always called her Mina. After about a year we finally compromised on "Mina Brigitta" as her first name. So her birth certificate says Brigitta Mae Olson, but we are intending to change that to Mina Brigitta Mae Olson. But then we took to calling her Mina Brigitta Mae Olsen Olson, "just because" I guess. And then after her transplant, we started thinking that she not only has some Olsen and some Olson in her, but some Rodriguez too, so we started calling her Mina Brigitta Mae Rodriguez Olsen Olsen, and that's what she calls herself. Except it's too many names to remember so she always leaves out the Mae. Isaac remembers the Mae, but he calls her Mina Brigitta Rodriguez Olsen Olson Mae. It's pretty hysterical to hear them rattle off all those names. Isaac has a few names himself; his birth certificate says Lars Isaac Henry Olson, but we of course call him Lars Isaac Henry Olsen Olson, to the tune of John Jacob Jingelheimer Schmidt. Don't know quite how all of that happened, but it still makes me chuckle so I guess that's OK.

I think Mina's doctors will be interested to know your background, so if you don't mind I'd like to print out that section of your email and bring it to her next appointment. Actually, I would like to ask your permission to post some of your e-mail on Mina's blog. Specifically, I know our families will want to hear the part about your ethnic background and X's story. I would cut out the part about the baseball bat. If that's too public for you (which I could totally understand), we could just forward it to a few select family members. I know I just couldn't do your stories justice by paraphrasing, and there has always been a lot of interest in Mina's donor because of the wonderful letter you wrote.

Did you start reading Mina's blog right away after you got the package? Must have been pretty weird to go back and read about the intense times after the transplant. When Mina got really sick and we weren't sure if she was going to make it, I remember thinking that it totally made sense to wait to allow donor-recipient contact. Especially in a case like Mina's where it was the donor cells that had the potential to save her life that were also causing life-threatening complications. You probably are aware that the donor cells kill about 15% of transplant recipients due to graft-vs-host disease. There wouldn't be any logical reason for a donor to feel that guilt or burden, but I know that would hardly have mattered if you had been reading the blog every day while Mina was in intensive care. I feel I should warn you at this point that Mina's story is far from over, and there are still many frightening possibilities out there for her. It's kind of too late now, I suppose, but your participation in our saga is still in some sense voluntary, so I wanted you to be aware of the possible emotional complications you've signed yourself up for.

So how did you end up on the bone marrow donor registry? There was a lot of speculation about that, because for whatever reason the registry had a more detailed typing for you than is typical, the kind they would have if you had had a close relative or if you had already been selected before as a potential donor. But it doesn't sound like that was the case. Did it just come because being a platelet donor made you more aware? Did you have to pay for the typing yourself or was there a donor drive of some kind? How did you become a platelet donor to start with? Platelet donation is incredibly important, as we know better than anyone, but it takes so much time and is such a pain to deal with and very few people know about it. Or did it come from the baseball bat incident?

So many questions. I guess we can save some for the phone call. Yes, of course you are not only welcome to call us, but we would love to talk to you so please do. Let's try to pick a time in advance for the first call, so Keri and I can both be here and make sure the kids are here and awake. Of course, phone conversations with 3-year-olds are pretty hit and miss, and I'm sure you're aware. Mina's usually pretty good on the phone, but if she's tired she might not want to talk at all. Weekdays will probably be tricky, because Mina suffers if she's not in bed by 6:30, which means there's not a lot of time between dinner and bedtime for her. And I'm often still at work at that time. Weekends are better, especially in the morning, but if weekdays are what works for you we can make one work for us too. Why don't you think about a time that would be good for you with your school schedule, and I'll talk to Keri about when is good for us. No pressure at all on getting it scheduled immediately, let's just try to make this as comfortable as possible for all of us.

Sean, thanks again for your email. It's great to be in contact with you. Even though our life stories are totally different, it really seems like we have a lot in common in terms of our outlook on life and on the world. Keri said today she felt like she just found a long-lost family member! Take care, and I look forward to conversing with you again via email or telephone.

Arne

Love the sig file, BTW.











From: Sean Rod
To: Arne Olson
February 27, 2007 6:47:48 AM
Subject: Re: Finally an email.....


Arne,

I am glad that you can relate to my delay in contacting you. Yes, I would have contacted you, even if you hadn't. Although I probably would have waited about the same amount of time, if only to give you time to take a step (just in case there were any complications that I was unaware of). I did stare at the donor recipient consent form that was sent to me as it lay next to my computer, but not wishing to intrude into what was and is a traumatic situation.

As far as pictures go, you do what ever is easiest for you. If you wish to send via email, go right ahead. I am glad Mina liked the tiara (although I wasn't sure if she still had a tendency to tear up some tissues, but decided to send a few just in case).

You can and may post whatever you wish. I have recently told various family and friends about the event (most claim that while it is awesome and that they hope for the best, I am still a hopeless case and that there is still a spot for me near the 7th circle of hell).

As far as why I was part of the program....? I guess it started by doing platelets and talking a few friends at the base into coming with me. Guilt tripping them into doing something positive. Although soon as someone pointed out that we could go out afterwards and drink about 2 beers and get a bit of a buzz I wound up getting about 4 extra guys to come along with me. Eventually it was a regular event for me, my buddies X, Y and Z (my Capt & CO). During a visit a nurse came in and asked me if I would like to sign up to be on the Nat. Bone Marrow Register. I didn't think twice and said ok. About 2 years into it my cousin (who was about 6 at the time) needed a donor and family members were asked to submit a sample. There is a chance that this might have offered more detail about me, but I am not sure. I was not a match for my cousin (who is doing well) but soon his situation is when I was asked again about Mina ...so go figure. I never had to pay for anything. All I ever had to do was show up and have them take what they wanted too.

The baseball bat situation is a looooong story that I will offer details of later, either via a letter or the phone. I will probably do the same in regards to the days leading up to the donation and my adventures in New York City.

Mina Brigitta Mae Rodriguez Olsen Olsen....doesn't really flow off the lips does it? Think about when she gets married? A drivers license? It is funny though!

I started reading her blog (and trying to catch up) soon after getting your letter. I am glad it happened afterwards, as it gave me a different perspective on what you all when through and are going through.

I think weekends would be better for both of us (especially with the time zone differences). So if you have a desire you let me know and I will do my best to be around.

I hope the CD music/photos played the way I timed it. It depends on the speed of the drive and the processor, and as I didn't know what you were running I just ran a few tests on a few different PC's (but maybe you use a Mac).

I am glad that we finally in touch with each other and have the same sentiments as Keri. I understand that Mina has a long road to travel and that she will continue to need care. I don't know what or if there is anything I could ever do, but if there is, please do not hesitate to ask. If she ever needs direct platelets will give whatever I can. (Especially if I ever visit the SF area....Amy and I have a friend who lives there). If she would ever need any kind of donation I would be more than willing to do whatever it takes. Consider me to be on reserve for as long as I am alive and in good health.


Ok off to draft up some journals. Talk to you soon.

Sean


[This is one I had on before my current sig --- "The good thing about having a reputation of being stupid, is that people are less suspicious of you."