Leuk: You are my father?

August 6, 2006 at 9:45 am 10 comments

One of the most frustrating things about having leukemia is the overdose of “medical background” questions that I cannot answer. Every new doctor, every new nurse, every shift-change… I need to explain to them that I am adopted. “Does ______ run in your family?” “Do you know of anyone in your family with _______ ?” I am tired of understanding that when they say “family” they don’t mean my mom, dad, sister, cousins, aunts, and uncles…. they mean those mysterious people back in Korea who exsist only in my fairy tales. I am tired of not having the answers…

Recently, I met with a man from the bone marrow bank. He asked me a bunch of questions, looked through my chart, and then said, “don’t worry, most of the time we find your match right in your own family!” How unreassurring is that?! I didn’t tell him I am adopted. I just kind of gave up. What’s the chances I’d find a match?

When I was first diagnosed with ALL (Acute Lymphoblastic Leukemia) I had these fantasies about calling up my adoption agency and telling them I needed to find my birthmother because of this medical problem. And then, a few minutes later, she would walk in the door and say, “Hi Julia! Here I am! Just in time!” She apologized for missing the first 23 years of my life and for the suffering I was experiencing. Her apology felt good. And my birthmother was a perfect match … and I was ALL-free in no-time.

Now I’m just mad. Mad that she won’t ever walk through the door to save me. Mad that no one cared enough to think that I would need her someday. Mad that who I’ve come to know as family can’t measure up when I need them to the most.

There is not enough Asian people willing to donate bone marrow – and Asian patients need Asian matches. They are grossly under-represented — yet Asian adoption is so popular.

I can’t use a bone marrow transplant now – “too sick” – but a lot of other Asian men and woman can. If you’re Asian – consider being a donor….

http://www.aadp.org

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Entry filed under: Adoption, ALL.

백지영 – 사랑 안해 ישראל

10 Comments Add your own

  • 1. Brooke Pape  |  August 9, 2006 at 11:08 am

    Hi Julia,

    I want to give you a website for a little girl and her family who have done a lot of work to get bone marrow donors, especially asians. Kailee is adopted from China and her mother made several trips to China trying to find a donor for Kailee. Through their hard work and dedication they found a donor in China for Kailee. I don’t know if it will be of any hepl to you but I felt that I should share it with you.

    Brooke

    Reply
  • 2. Julia  |  August 9, 2006 at 11:15 am

    Hi Brooke!

    Do you mean: http://www.kaileegetwells.com ??

    Thanks for your concern and help!

    Julia

    Reply
  • 3. Daughter of 2 women  |  August 9, 2006 at 1:47 pm

    That just stinks. I can’t find any other words that seem appropriate. Hope you are on a road to healing.

    Reply
  • 4. brookesblog  |  August 9, 2006 at 5:13 pm

    Yes I meant that website, sorry I forgot to put it in.

    Reply
  • 5. Rebecca  |  August 10, 2006 at 2:09 am

    Julia, You don’t know me, but I’m a faithful blog reader. I am wishing you well and hope you kick this thing, hard and soon.

    Reply
  • 6. Papa2hapa  |  August 10, 2006 at 9:11 pm

    Julia, what a great post. I think you’ve really voiced what a lot of adoptees without records feel like.

    Reply
  • 7. Margie  |  August 12, 2006 at 12:03 am

    Julia, I’m so sorry – that you are dealing with leukemia, for all the secrecy in adoption, the inability to get your records. Have you tried working with G.O.A.’L or InKAS? Both are on the web, both help adoptees search for information and families.

    Thank you for the link to AADP. I’m familiar with NMDP, but hadn’t heard of AADP. Do you know if they work in CA only, or across the country?

    Reply
  • 8. harlowmonkey  |  August 12, 2006 at 11:43 am

    Julia, my thoughts are with you. It stinks that we don’t have access to our medical history. It also stinks that there are a lack of Asians who are bone marrow donors. Asians also have a high rate of Hepetitis B, which is undetected through most hepititis tests and most adoptive parents of Asian chidren have no idea.

    I wish you well in your healing and will continue to keep you in my thoughts.

    Reply
  • 9. Sara  |  August 13, 2006 at 6:00 am

    Julia,

    http://medicine.snu.ac.kr/english/main4_sub0205.asp

    is the English-language webpage of the Dept of Medicine at Seoul National. I just emailed the head of medicine and head of heme-onc to ask if your doctors could get in contact with the Korean bone marrow registry, to communicate with them about whether there is a match in Korea. From the website, it seems they have an active bone marrow transplant program.

    (I know you said you are too sick right now. But – when you are well enough – it would be good to know already if there is a match out there. It seems to me that Korea owes you this much….)

    All the best, Sara

    Reply
  • 10. RainbowFriends.Net › From Stillness to Action  |  June 1, 2008 at 8:54 pm

    […] Julia had some harrowing entries on being an adoptee with a serious illness. Apparently a man at the bone marrow bank told her, “don’t worry, most of the time we find your match right in your own family!” […]

    Reply

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Julia’s Jam

It’s just not that black & white. Not because I am taking a stand against. Just because, the issues I face are somewhere in the grey area and to weed through them, I blog. I blog. ~

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