# Baby + Leukemia = Proof That Universe Sucks **URL:** \ **Category:** Miscellaneous and Personal Stuff I Must Share\ **Created:** [April 12, 2007, 2:01pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798 "2007-04-12T14:01:18Z")\ **Posts on this page:** 20\ **Page:** 1
**Author:** ![Spiral\_Stairs](https://avatars.discourse-cdn.com/v4/letter/s/50afbb/32.png) [@Spiral\_Stairs](https://boards.straightdope.com/u/Spiral_Stairs)\ **Post date:** [April 12, 2007, 2:01pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/1 "2007-04-12T14:01:18Z")
For about eight-and-a-half months, I’ve been a parent. During that time, I’ve come to discover a kind of love that was new to me. Intense. All-consuming. The kind of love that makes you want to swallow up its object. I’ve also developed a love for babies generally. I’ve always liked babies, sort of like how I’ve always liked baseball. But now I feel this affinity for them. Like I can look at them and say, “Hey, you. I understand you. I know where you’re coming from. You and me, we’re the same.” I drop off my little Charlie at daycare every day and it’s just wonderful swimming for a few minutes in a room full of happy little crawly, babbly creatures. I recently ran across the story of [Trevor Kott](http://www.trevorkott.com/). Truth be told, I’m sure there are many Trevor Kotts in the world, and the only thing that differentiates this one is that his parents have the means and inclination to publicize his situation. Which is this: He is a six-month-old baby who was _born with leukemia_. That’s right. _Born with leukemia_. His situation is also this: He needs a bone marrow transplant but has no match. So his parents have launched what they describe as a “grassroots” campaign to find him a match. There are “drives” to identify potential donors, and those who cannot make a drive are encouraged to register for the bone marrow registry. I cried when I read the site. I don’t think I would have cried a year ago. But now that I have my own litttle beast, and I think about how perfect and sweet and innocent he and all babies are, and I think about the unbelievable injustice of a world that forces a baby to undergo what this one’s gone through, with the probable end result of a very early and premature death, I just can’t take it. It’s so unfair. It’s so sad. It also makes me feel SO lucky for what I have. Now that I have my own, I am able to put myself in the shoes of Trevor’s parents. Well, I am able to _try_ to do that. I’m sure their experience is the sort of thing that cannot be understood by those who haven’t undergone it. But even to the extent that I can vaguely imagine their world, I imagine that I would be furious with the universe. I would also be furious with a world of people who, because they are lazy or fearful or uncaring do not make themselves part of the bone marrow registry. I would have trouble understanding why people would not put themselves in the position to save a life. A year ago, I would have been – and was – one of those lazy and fearful (and perhaps uncaring) people. I had some general awareness that there existed a bone marrow registry, but I thought things like, “Wouldn’t they have to stick a big old needle into my bones? Ouch. And yuck.” And then I would go on my merry way. But now that I wear a parent’s shoes, I feel more of an obligation to do what I can to mitigate the fundamental cruelty inherent in the chaos of the universe. So I just signed up for the bone marrow registry. (Which is [here](http://www.marrow.org/HELP/Join_the_Registry/Join_Now/join_now.html?src=text), in case you’re curious.) Consider it. ---
**Author:** ![dangermom](https://avatars.discourse-cdn.com/v4/letter/d/e274bd/32.png) [@dangermom](https://boards.straightdope.com/u/dangermom)\ **Post date:** [April 12, 2007, 2:20pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/2 "2007-04-12T14:20:16Z")
It’s amazing how parenthood turns formerly thick-skinned people into quivering blobs of teary-eyed jelly, isn’t it? Good for you for registering, **Spiral Stairs**. You may like to peruse other pediatric cancer-related sites and fundraisers, such as [Light the Night](http://www.lightthenight.org/site/c.itJZJ7MOIwE/b.710065/k.CBBE/Home.htm) Walk, the fundraiser for the Leukemia and Lymphoma Society. [CaringBridge](http://www.caringbridge.org/index.htm) offers free websites to patients, so that they can keep family and friends updated without hassle. These are the two I have up on the browser right now, but there are lots more organziations that work to make life a little easier for families, and which are worthy causes for donation. ---
**Author:** ![Cowgirl\_Jules](https://avatars.discourse-cdn.com/v4/letter/c/4af34b/32.png) [@Cowgirl\_Jules](https://boards.straightdope.com/u/Cowgirl_Jules)\ **Post date:** [April 12, 2007, 2:34pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/3 "2007-04-12T14:34:20Z")
OK: done. I’ve meant to before, and haven’t. Now I have. ---
**Author:** ![Ellen\_Cherry](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/ellen_cherry/32/3600_2.png) [@Ellen\_Cherry](https://boards.straightdope.com/u/Ellen_Cherry)\ **Post date:** [April 12, 2007, 3:45pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/4 "2007-04-12T15:45:48Z")
Thanks for publicizing this, Spires. You’re a good man. I’ve been on the bone marrow registry for 19 years and I’ve never been asked to donate. I will, of course, do so immediately if ever I am called. ---
**Author:** ![Mama\_Zappa](https://avatars.discourse-cdn.com/v4/letter/m/71e660/32.png) [@Mama\_Zappa](https://boards.straightdope.com/u/Mama_Zappa)\ **Post date:** [April 12, 2007, 7:34pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/5 "2007-04-12T19:34:40Z")
I’m so glad you posted this! Years ago, Typo Knig and I went to a marrow drive for a local girl (Allison Atlas, for long-term DC-area residents) and they turned me down because I have asthma. I read the guidelines on the marrow donor webpage and asthma is no longer an automatic disqualifier!! Just registered and paid my 52 bucks for a mouth-swab kit. Here’s hoping enough people hear about this boy to find him a match in time ☹ ---
**Author:** ![NurseCarmen](https://avatars.discourse-cdn.com/v4/letter/n/5daacb/32.png) [@NurseCarmen](https://boards.straightdope.com/u/NurseCarmen)\ **Post date:** [April 12, 2007, 7:55pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/6 "2007-04-12T19:55:04Z")
Finn was born in August. He’s my second, but I know where you’re coming from. I registered years ago (All you have to do is a mouth swab now!?! You lucky bastards!) Whenever I read stuff like this, I think to myself “Please, call me and tell me I’m a match. Please, please call me and tell me I’m a match” They haven’t yet. But damn, I hope they do someday. ---
**Author:** ![Zsofia](https://avatars.discourse-cdn.com/v4/letter/z/7bcc69/32.png) [@Zsofia](https://boards.straightdope.com/u/Zsofia)\ **Post date:** [April 12, 2007, 8:13pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/7 "2007-04-12T20:13:06Z")
[QUOTE=Mama Zappa] I’m so glad you posted this! Years ago, Typo Knig and I went to a marrow drive for a local girl (Allison Atlas, for long-term DC-area residents) and they turned me down because I have asthma. I read the guidelines on the marrow donor webpage and asthma is no longer an automatic disqualifier!! Just registered and paid my 52 bucks for a mouth-swab kit. Here’s hoping enough people hear about this boy to find him a match in time ☹ [/QUOTE] _Mouth swab_?! When I registered there were big fat needles! ---
**Author:** ![Mama\_Zappa](https://avatars.discourse-cdn.com/v4/letter/m/71e660/32.png) [@Mama\_Zappa](https://boards.straightdope.com/u/Mama_Zappa)\ **Post date:** [April 12, 2007, 8:40pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/8 "2007-04-12T20:40:09Z")
[QUOTE=Zsofia] _Mouth swab_?! When I registered there were big fat needles! [/QUOTE] Yeah. I guess they found a way to use that for initial screening - makes it easier to get people to sign up by mail rather than making them trek down to some place that has needles. **Typo Knig** had to get stuck at that drive we went to (and the local NBC affiliate showed a clip of him that night, plus it made the national news a month or two later - our brief claim to fame). And in praise of him, he thought they were going to need to take an actual _marrow_ sample then… but he went anyway \. He was quite relieved when I corrected that notion while we were in the car on our way there!! Wouldn’t surprise me if the buccal swabs were less accurate / sensitive than the blood testing, but if it does OK as an initial screen, and brings in more people, terrific! And even the blood test was not a complete one - it was cheaper to test for a subset of the factors they needed, then call specific people in if they were at least partial matches. Typo Knig did get called back for second testing (nothing came of it). ---
**Author:** ![Boyo\_Jim](https://avatars.discourse-cdn.com/v4/letter/b/87869e/32.png) [@Boyo\_Jim](https://boards.straightdope.com/u/Boyo_Jim)\ **Post date:** [April 12, 2007, 9:20pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/9 "2007-04-12T21:20:47Z")
The mouth swab comment has given me a strange idea, and I am going to start a thread oniy: [Checking government collected DNA against transplant lists?](http://boards.straightdope.com/sdmb/showthread.php?p=8459330#post8459330) ---
**Author:** ![lavenderviolet](https://avatars.discourse-cdn.com/v4/letter/l/cdc98d/32.png) [@lavenderviolet](https://boards.straightdope.com/u/lavenderviolet)\ **Post date:** [April 12, 2007, 10:56pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/10 "2007-04-12T22:56:10Z")
[QUOTE=Mama Zappa] he thought they were going to need to take an actual _marrow_ sample then… but he went anyway \. He was quite relieved when I corrected that notion while we were in the car on our way there!! [/QUOTE] Kudos to him for wanting to sign up anyway. 🙂 I hope that this thread can help spread the word to other people about how it’s actually much easier than that to sign up! I’ve been on the bone marrow registry for a few years now, and it’s definitely well worth the little bit of effort it takes to sign up for the sake of possibly saving someone’s life. I definitely hope Trevor finds a donor. Even though I’m not a parent, I still find it absolutely heart-breaking when I hear about sick and dying children like this. ☹ ---
**Author:** ![Moirai](https://avatars.discourse-cdn.com/v4/letter/m/96bed5/32.png) [@Moirai](https://boards.straightdope.com/u/Moirai)\ **Post date:** [April 13, 2007, 12:36am UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/11 "2007-04-13T00:36:26Z")
Hopefully lots of different people will be motivated to get on the registry. Baseball fans will know Hall of Famer player (& pretty damned good hitting coach) Rod Carew. His daughter Michelle died in 1996, after a fruitless search for a donor. From the _Honolulu Star Bulletin_ at the time- > [@](#): > > On Wednesday, Carew’s 18-year-old daughter, Michelle, died after a truly courageous fight with leukemia. She had 14 operations and the chemotherapy left her body blistered and raw. > > Rod Carew went against his quiet nature and issued a nationwide appeal for a bone-marrow donor last November. It drew 70,000 responses, but none matched. > > Throughout the horrible ordeal, Michelle not only fought off death several times, but kept her family and friends upbeat during their visits to the Children’s Hospital of Orange County, just a long throw away from Anaheim Stadium. > > And a hospital spokesman said the donor response will surely save the lives of other cancer patients in the future. > > She received a fetal umbilical cord blood transplant as a last-ditch effort to rebuild her immune system, but her ravaged body finally gave out. > > WE never expect someone healthy to suddenly have a life-threatening illness. When it happens to a child or teenager, we are shocked that much more. Why? What possible good can come from someone suffering and dying at an age when she should be nervous about a first date, not another horrifying and painful operation or therapy. > > Michelle Carew was doing school work on a home computer last September when she collapsed. Ironically, her father carried her to bed, praying that she was just overly tired. Then came the diagnosis and eight months later she was dead. > > Her battle moved the nation. Many sent her knitted or painted snowflakes after her father said she had never seen it snow. And so many thousands of strangers were tested to see if they could be donors. It showed that we are still a country of compassion. It was Mike Fitzgerald’s column on 4/19/96. You can read the entire article [here](http://starbulletin.com/96/04/19/sports/fitzgerald.html) It was postulated at the time that not enough folks of mixed race were on the registry. Most folks seemed to be caucasians, which is sad. ---
**Author:** ![Zsofia](https://avatars.discourse-cdn.com/v4/letter/z/7bcc69/32.png) [@Zsofia](https://boards.straightdope.com/u/Zsofia)\ **Post date:** [April 13, 2007, 12:40am UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/12 "2007-04-13T00:40:28Z")
If you don’t get tested at a drive, at least when I did it, you have to pay a certain amount of money. I being a cheapskate waited until there was a drive - a local sorority was looking for a match for a girl who was, IIRC, Lebanese/Filipino. Obviously they wanted a diverse group of people, particularly from those populations, but looking around everybody in the waiting room was white as the driven snow. ---
**Author:** ![NurseCarmen](https://avatars.discourse-cdn.com/v4/letter/n/5daacb/32.png) [@NurseCarmen](https://boards.straightdope.com/u/NurseCarmen)\ **Post date:** [April 15, 2007, 4:25pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/13 "2007-04-15T16:25:42Z")
[QUOTE=EJsGirl] Baseball fans will know Hall of Famer player (& pretty damned good hitting coach) Rod Carew. His daughter Michelle died in 1996, after a fruitless search for a donor. [/QUOTE] The Minnesota Twins paid for the marrow testing for anyone who showed up to sign up as a donor. That’s when I signed up. ---
**Author:** ![I\_Love\_Me\_Vol.I](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/i_love_me_vol.i/32/521_2.png) [@I\_Love\_Me\_Vol.I](https://boards.straightdope.com/u/I_Love_Me_Vol.I)\ **Post date:** [April 15, 2007, 5:07pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/14 "2007-04-15T17:07:20Z")
Thank you for reminding me of something important that I have considered doing before but have not yet gotten around to. I will register and order the kit today. I came across a [website](http://myspace.com/savegiovanniguglielmoorg) for another child who needs a donor. They give a promo code that people can use to have their $52 cheek swab fee paid for. \*\* NOTE:\*\* I do not know the details of this, please read the website for details. For instance, I do not know who provides this money. (Are the parents crazy rich? Is there a foundation? Was there a bake sale?) It’s possible that by NOT using the promo code and instead paying the fee yourself you would free up money for someone else who _can’t_ afford the $52. I do not know, but I am using the code because I could not easily afford to register otherwise. The promo code is **G022007**. Those are zeros. Someone please post if somehow it is a bad idea for me to provide this promo code here. I can not think why it would be, but I have not yet considered all that goes into having a promo code. Someday I need to get over my needle-phobia and give blood. I am working on that. But for today, as a coward (they give you anesthesia) , I shall register to donate bone marrow if called upon to do so. ---
**Author:** ![katie1341](https://avatars.discourse-cdn.com/v4/letter/k/91b2a8/32.png) [@katie1341](https://boards.straightdope.com/u/katie1341)\ **Post date:** [April 15, 2007, 5:14pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/15 "2007-04-15T17:14:18Z")
I registered for the bone marrow donors list about 10 years ago- unfortunately, a malignant melanoma two years later resulted in my being permanently kicked off of the list. ---
**Author:** ![Baker](https://avatars.discourse-cdn.com/v4/letter/b/bb73d2/32.png) [@Baker](https://boards.straightdope.com/u/Baker)\ **Post date:** [April 15, 2007, 6:05pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/16 "2007-04-15T18:05:02Z")
I registered years ago after the parents of a young woman at my church issued a plea for donors. They knew how unlikely it was to find someone, their daughter was already dying, but her folks wanted others to have a chance. So I registered and paid. It took only a small vial of blood back then. I’ve never been called, but once a year I still get the newsletter. I’d go of course, otherwise why register in the first place. Can anyone tell me what the extraction process is like? I’m afraid of needles, very much. Would they knock me out to get it? I give blood on a semi-regular basis, just got my four gallon pin, but I’ve never once seen the needle in my arm, it creeps me out. ---
**Author:** ![Spiff](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/spiff/32/9852_2.png) [@Spiff](https://boards.straightdope.com/u/Spiff)\ **Post date:** [April 15, 2007, 6:40pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/17 "2007-04-15T18:40:57Z")
[QUOTE=Mama Zappa] Wouldn’t surprise me if the buccal swabs were less accurate / sensitive than the blood testing, but if it does OK as an initial screen, and brings in more people, terrific! [/QUOTE] As an employee of the [National Marrow Donor Program](http://www.marrow.org), I can tell you that the buccal swabs are just as accurate as the vials of blood we collected years ago. DNA is DNA. We currently have about 6.5 million volunteers on the Registry, and we’ve arranged 27,200 transplants. Doing the math, only about 1 in 240 volunteers have donated. For those of you who have registered, thank you, and if you’ve been on the Registry for many years, please be sure to keep us updated with your current address. The annual newsletter that a Doper mentioned earlier in this thread is one way we keep in touch. All the newsletters returned to us because the volunteer has moved starts us on the process of trying to locate your new address (just in case you are called). So, if you think you’re on the Registry, but haven’t seen our annual newsletter (“The Marrow Messenger”) in many years, stop by [http://www.marrow.org](http://www.marrow.org) and update your whereabouts please. ---
**Author:** ![Mama\_Zappa](https://avatars.discourse-cdn.com/v4/letter/m/71e660/32.png) [@Mama\_Zappa](https://boards.straightdope.com/u/Mama_Zappa)\ **Post date:** [April 15, 2007, 6:58pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/18 "2007-04-15T18:58:18Z")
[QUOTE=Spiff] As an employee of the [National Marrow Donor Program](http://www.marrow.org), I can tell you that the buccal swabs are just as accurate as the vials of blood we collected years ago. … [/QUOTE] Cool - ignorance fought!! I obviously did not know that. For Trevor’s parents: whether or not their son’s donor is found in time, I hope that they will, someday, be able to take comfort in knowing that their son’s plight may have helped save someone else’s life by bringing in yet more donors. I recall that the drive Typo Knig registered at, while it never found a match for the girl in question, did bring in enough people that several matches were found for other people. ---
**Author:** ![PunditLisa](https://avatars.discourse-cdn.com/v4/letter/p/4af34b/32.png) [@PunditLisa](https://boards.straightdope.com/u/PunditLisa)\ **Post date:** [April 15, 2007, 7:48pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/19 "2007-04-15T19:48:01Z")
I’ve been on the Bone Marrow Registry for over a decade. No calls yet. ☹ I’d be very honored to give. > [@](#): > > Can anyone tell me what the extraction process is like? I’m afraid of needles, very much. Would they knock me out to get it? I give blood on a semi-regular basis, just got my four gallon pin, but I’ve never once seen the needle in my arm, it creeps me out. They take the marrow out of your back, I believe, so no need to see the needle. If you donate your blood regularly, this shouldn’t be that big of a deal. It’s more invasive and more painful but wouldn’t you be thrilled at the prospect of potentially saving someone’s life? ---
**Author:** ![Baron\_Greenback](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/baron_greenback/32/48_2.png) [@Baron\_Greenback](https://boards.straightdope.com/u/Baron_Greenback)\ **Post date:** [April 15, 2007, 8:59pm UTC](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798/20 "2007-04-15T20:59:13Z")
For the Brits, the main donor registry organisation is called [The Anthony Nolan Trust](http://www.anthonynolan.org.uk/). [Next page](https://boards.straightdope.com/t/baby-leukemia-proof-that-universe-sucks/399798.md?page=2)