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)