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Tuesday, February 7, 2012

Constant Hospitalizations....Bone Marrow Awareness

***Please submit your email in the long white rectangular box to get automatic email notifications when there is a new update on Andrew's condition.

***THERE WILL BE A BONE MARROW DRIVE THIS SATURDAY FEBRUARY 11TH FROM 9AM TO 2PM AT:

SOAPIE'S CLEANERS
516 DEMPSTER AVE
EVANSTON, IL 60202

Andrew asks on his shirt, "What's your excuse!?!?
He says to all: BALD IS BEAUTIFUL!
 Andrew was hospitalized this past Thursday for a high fever, after coming home Sunday from his 10 day stay for intensive chemotherapy, which is to be expected considering his immune system is so suppressed that his body cannot fight off infection.  As I write this, we found out that he will be released later this afternoon. 


***UPDATE: After just being released last night, Andrew was admitted this morning for a high fever and other complication due to his chemotherapy, which causes low blood cell count that can't fight infection.


Three years ago when Andrew was first diagnosed and his hair started to fall out, Andrew was reluctant to shave his hair off preemptively.  I remember the sadness that his face expressed as I started to shave his head. I still get choked up to this day.  The unknown and the fear were palpable as this act was another loss in Andrew's mind's eye.  It was no consolation that I shaved my head first. Fast forward to this diagnosis, Andrew came up to me earlier last week and asked if I could shave his hair, because of the clumps of hair coming out.  This was a stark contrast from 3 years back, where he was apprehensive to do so.  In a straight forward assertive manner, he wanted this done.  I asked if he was okay with it and without hesitation, he nodded. Andrew has surely come along way, hasn't he?!?  He has matured with grace right before our eyes.
Definitely not as "beautiful" as Andrew!
      As Andrew's parent I would do anything to make sure that he gets healed.  I would give my life if it meant that Andrew would be cured!  But apparently that's not how God is intending it to be.  So, my family and I  will do whatever "small" or "big" to make his life as comfortable as possible. 
One small thing you and I can do that can be potentially big for Andrew or someone else in need of a bone marrow transplant, is to get tested to see if you are a bone marrow match to potentially save a life!  Many of you have come to one of the past two bone marrow drives, but many more were not able to for whatever reasons.  I encourage you all to register and send away for a kit at www.bethematch.org (click on link).  Everyone who has registered on-line, told me how easy it was to register for a kit, complete it and send it away.  Goto www.bethematch.org, register to send away for a kit, receive kit, swab inside of mouth with 4 oversized swabs, put the swabs in a pre paid postage envelope and send back!  Voila! That's it!  A few minutes to possibly save Andrew's life or one of thousands on a bone marrow transplant waiting list.  
Be the Match does an outstanding job in explaining bone marrow donation and the questions that go with it.  They also have foreign translation in many languages. AWARENESS IS THE KEY!  Will you help today?  Practically, you can email your friends my blog or email about Be the Match and the simplicity in getting registered.  With the advent of social media, getting the word out is as easy as going on Facebook, Twitter or other outlets.  Ask yourself one thing: What would I do if my child needed a life saving bone marrow transplant?  I think I know the answer.  Will you save a life today?


Calling all Asians!!! Here are some sobering statistics about the lack of Asians registered on the national registry!  Numbers do not lie! 



National Registry of Potential Marrow / Stem Cell Donors
As of January 3, 2009
Race
Donors
Registered
% of
Total
Number of
Transplants
Asian American Total
532,006
7.2%
531
  - South Asian
139,460
1.9%
25
  - Filipino (Philipino)
43,437
0.6%
55
  - Japanese
32,639
0.4%
112
  - Korean
67,913
0.9%
51
  - Chinese
84,284
1.1%
56
  - Other Southeast Asian
36,400
0.5%
49
  - Vietnamese
16,967
0.2%
11
  - Unspec. Asian/Pacific Islander
95,093
1.3%
172
  - Multiple Asian/Pacific Islander
15,813
0.2%
876
Caucasian
5,408,623
73.0%
14,104
Black or African American
559,972
7.6%
876
Hispanic
386,549
5.2%
766
National Hawaiian/Other Pacific Islander
10,682
0.1%
21
American Indian/Alaska Native
83,739
1.1%
85
Other
30,072
0.4%
209
Multiple Race
219,367
3.0%
-
Declines
43,696
0.7%
265
Unknown
132,606
1.8%
970
TOTAL
7,407,312
100%
17,843
Statistics are:
If you are of Caucasian descent the likelihood of your finding a marrow match is 80%

If you are of minority descent your likelhood of finding a match (all minorities as a group) is 30% or less.

If you are of a smaller ethnic group like Tami is being Japanese, your odds are even lower then that.

The statistics get worse in the national registry in Korea! 



Andrew's Army is spearheading drives not only to find a match for Andrew, but for the thousands of others that are in desperate need to find a match. Our family recently met a boy named Connor, son of Steven and Stephanie, who has been waiting years for a bone marrow transplant because of a  very rare disease called X-linked hyper IGM.  This clinical sounding disease is a devastating immunodeficiency.  


I met Connor and Stephanie at Children's several weeks back and had a great conversation about Connor and Andrew's plight, the struggles in our journeys, the need for bone marrow donation awareness, how we can spread the word to get as many people registered as possible, especially Asians whose numbers are woefully low in the national and international registries, the urgency of finding a match for our sons, among other things. We both agree that we will do anything to find a match!  Please goto Connor's website, www.savingconnor.com to read up on Connor's story.  


Personally, Jenn and I have had our ups and downs these past few weeks.  The stress has taken it's toll mentally and physically.  With few hours of sleep each night, this lack of restful sleep effects us mentally.  The mental stress effects us physically.  You get the picture.  I know that the stress has often times lead me away from the source of energy that I need to go on: God.  But I know that my God is big enough to handle my anguish, pain, sadness and apathy.  Trust me, I have tested him with my fury and He still takes me back.  But it is residing under His wings that has given me a modicum of solace, a peace that passes all understanding, as written in Philippians 4:7. So I will heed the words in Isaiah 40:31 as much as I can:

But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.


Hinsdale Central for Life!


Andrew with his freshly shaved amigos, Justin and Jonathon!
 

Andrew miraculously grew dredlocks;-)



Also, It would be great if you could comment at the end of this post and encourage us with a scripture, word of encouragement or whatever you can think of to help us through this arduous time;-) And it also helps me know that people are reading this blog.  Thanks!  Remember to share this blog to others as well.





6 comments:

  1. Hi Park Family,
    Just wanted to let you guys know that we continually pray for Andrew and your family. Nathan prays every night for Andrew to be in total remission and to find a bone marrow donor. Emiley was enraged that she couldn't register because she was still 17.

    Stay strong!!

    Clara and family

    ReplyDelete
  2. Hi-

    I just found out about your family through Peter&Kim, and I found them through friends of mine from church. Thank the LORD that the body of Christ extends much larger than the walls of a building. =]

    I haven't read through this blog yet, but I'll go back and read through all your posts, so I can get caught up and I'll definitely be praying for each one of you.

    I only stopped by here to let you know that 1) yes, I am registered as a bone marrow donor, and 2) there's a non-profit foundation that will register bone marrow donors for free if you're all or part Asian. I thought you might want to share that with your readers soon, especially since I know some may balk at registering right away because of the cost. http://a3mhope.org/

    Oh, and also to share a passage with you:
    "Those who trust in the LORD are like Mount Zion, which cannot be shaken but endures forever. As the mountains surround Jerusalem, so the LORD surrounds his people both now and forevermore." (Psalm 125:1-2).

    Your sister in Christ,
    Lois

    ReplyDelete
  3. Park Family,

    Thank you for your vulnerability and openness during a sensitive and difficult time. I can only imagine how difficult this is, but how glorious it is that you and your family experience 2 Corinthians 12:9, and I hope that I get to more and more every day as well. My heart is overwhelmed and thankful. It's incredibly rebuked and challenged, and encouraged and hopeful. As much as I hate to make this about me, I can't help but give thanks to God for you and your family.

    I do want you to know that Servants from UIC is working to organize a bone marrow drive. UIC is filled with Asian-Americans and it almost feels like a calling for us to step out of our comfort zone and engage our campus to raise awareness.

    Thank you for reflecting Christ and setting an example for me. My eyes well up as I'm sitting at work because I think of his great faithfulness to you and your family, and to me and to everyone he died and rose again for.

    The Park family will stay strong because of the Strong One. As you lean on his understanding and submit to him, my prayer is that the Holy Spirit will work within your hearts and there'll be a burning because of the perfect Christ-like love that is casting out all fears. As the Holy Spirit continues to restore and regenerate your heart and soul, I'm praying that you guys dwell upon the grace you've already received but is necessary to fight the good fight of faith and to live the glorious call placed upon your lives. I'm thankful for the faithful one who doesn't leave us, but leads us like the Good Shepherd who makes us lie down on green pastures. He is the Great I am, and the Emmanuel- the God with us.

    The verse I'd like to share is from Daniel 10

    18 Again the one who looked like a man touched me and gave me strength. 19 “Do not be afraid, you who are highly esteemed,” he said. “Peace! Be strong now; be strong.”

    When he spoke to me, I was strengthened and said, “Speak, my lord, since you have given me strength.”

    ReplyDelete
  4. Your lives are echoing the Master's Word...The news of your faith in God is out.We don't even have to say anything more--you're the message!
    1 Thessalonians 1:8

    I'll be praying for you Andrew(Hug)

    Karla from the Philippines

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  5. I'm a Korean American male who got swabbed 2 years ago. My Be the Match donor # is 0940-5408-7. If I can of help, please let me know.

    ReplyDelete
  6. I'm a father of two young boys, and your blog is a great reminder that I have much to learn about being an awesome dad--through thick and thin. Thanks for making me a better man today.

    ReplyDelete