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Thursday, February 23, 2012

BITTERSWEET...REMISSION!!!!!!!!!!! BUT WE NEED A MATCH!!!!



 Greetings everyone.  Forgive me for not updating Andrew's condition sooner, but to be quite honest I have not had the energy and gumption to do anything, let alone take care of Andrew and my family.  I am mixed with so many emotions and I will elude to them later in this blog entry.


First of all, the best news we have had in a long time: 
ANDREW IS IN REMISSION!  "Houston", I repeat, Andrew is in clinical remission.  I spoke with 
Dr. Morgan on Friday and she said the preliminary results of the bone marrow biopsy were good and that we would not know until next week whether he was in remission.  So there was a double dose of good news going into the weekend as Andrew came home for a few days to spend with his Uncle Albert, Auntie Jennifer, cousin Margot and other family and news of the preliminary results of the bone marrow biopsy being positive.  Andrew was asked Friday if he would like to go home for a few days before another round of chemo which started yesterday, lasting five days.  The only issue was Andrew coming off his i.v. pain meds for his abdominal pain.  The overwhelming desire to spend time with his family for a few days at home and the prescribing of a new longer lasting pain got him home. He was tired at times, but he was able to spend some quality time with the people who he loves and vice versa.  It was such a gift having Andrew with us as we celebrated my birthday with some steak.
Sorry for going on a mini tangent, back to the remission.  We found out about Andrew's clinical remission from Dr. Morgan when we got admitted yesterday (Wed.).  Dr.  Morgan said the remission was unexpected and was pleasantly surprised.  Prior to the bone marrow biopsy, Dr. Morgan had explained to us that she would be surprised if Andrew was in remission and his myeloid proliferative disease usually required more than one round of chemo to get into remission.  If  anyone knows of Dr. Elaine Morgan, one knows she means what she says and does not mince her words.  Funny, but to tell you the truth, I did not know how to react.  I should have been jumping for joy, but I wasn't so convinced.  So with a very stern look, I asked her how I should be feeling.  She said I should be ecstatic!  More than anything, I think I was relieved.  After, I went to the bathroom, knelt, lifted my hands to the sky and said thank you to God!  Andrew was feeling so drowsy from his pain meds that he really couldn't emote on the remission news.  


Some of you may be wondering why Andrew is getting chemotherapy if he is in remission.  Regardless of the news of the bone marrow being positive or negative, chemo was scheduled to either eradicate the remaining cancer or maintain the remission.  So, the pressing issue is find Andrew a bone marrow match!  I don't know if you all know, but without a bone marrow transplant Andrew will not survive.  Plain and simple.  Sorry for the forthrightness, but that is the cold harsh reality of the situation.  I think that is why I was conflicted with emotions when we found out the good news. I was feeling happy and relieved, but the feelings were juxtaposed with a sense of urgency and fear. The clock is ticking as we need to find a live saving bone marrow donor.  The longer he goes without a transplant, the more chance he has of relapse.  The current plan is to have Andrew go through chemo for the next 8 to 10 weeks and during that time to find a match.  Here are a few Bone Marrow drives coming up.  Please advertise this to as many people you know.   Remember, it only takes one to save my son's life or some other person waiting for a life saving bmt.


Sunday February 26th 6pm to 8pm at
 Canaan Presbyterian Church:
1424 Greenwood Ave. Glenview, IL 60062


TUESDAY MARCH 6TH &

WEDNESDAY MARCH 7TH
9:00 A.M. – 4:00 P.M:
At University of Illinois circle campus
First Floor of Student Center East outside of the bookstore 
(Campus of UIC)750 S. Halsted St. Chicago, IL
Goto Facebook (click here):
https://www.facebook.com/events/276974129040450/?context=create

***Also, I got wind of this from a contact at the Leukemia Research Foundation for Registry Drives for 
Marc Chibnik & Lacy Horwitch
Sunday, February 26
9 AM - 12 PM
Congregation Beth Shalom
3433 Walters Avenue
NorthbrookIllinois  
AND
9 AM - 2 PM
Temple Chai
1670 Checker Road
Long GroveIllinois
Marc Chibnik is a father of 4 and has been diagnosed with a rare lymphoma, which relapsed in January.  He is also a difficult match.  Friends and family just raised over $11,000 this week to have more than 200 kits processed that were sitting, unable to be processed due to $$$.  Here is a link to their Caringbridge site:  www.caringbridge.org/visit/marcchibnik
WE ALL HAVE TO WORK TOGETHER TO FIND A MATCH FOR ANDREW, MARC and LACEY!


by the way, the bone marrow drive last week at my cousin Pam's church, Open door presbyterian church, registered 250+ for be the match!!!!!!  Praise god! let's keep this going guys!

Please share this blog to as many people as possible so we can spread the word about bone marrow awareness.  Thanks!


I am really tired, so I will write the second part of this blog tomorrow!  Thanks! xoxoxoxo

joe













Friday, February 17, 2012

STILL PRAYING AND WAITING!

UNCLE ALBERT, AUNTIE JENNIFER AND COUSIN
MARGOT JUST GOT IN FROM CALIFORNIA! 
***UPDATE 2/17:
  Andrew's mrcp and endoscopy came back and there wasn't any major findings on why Andrew's abdomen is hurting, for such a long period of time.  The Mrcp showed the pseudo cyst found around the pancreas went down dramatically all on it's own!  Praise God!  It also showed the the tubes following from the pancreas were draining properly and smooth and straight.  The endoscopy showed the a little swelling around the opening in the stomach draining to the small intestines.  As a result, the g.i. doctors prescribed a special antibiotic that will linger in his stomach instead of spreading it systemically around the body, which should kill any remaining bad bacteria. Also, all the pain meds that he has received isn't fixing his stomach issues, it's just masking them.  Andrew finally found an oral pain med that seems to be working. Andrew has tried virtually every oral narcotic to no prevail.  We continue to wait for the results of the bone marrow biopsy to see if Andrew is in remission.  We also are praying the potential match is indeed a match.  PLEASE CONTINUE TO PRAY UNTIL WE FIND THE RESULTS AND WE FIND OUT IF THE PERSON IS A MATCH.   WILL KEEP YOU UPDATED.  Thank you everyone!

Wednesday, February 15, 2012

VERY IMPORTANT! PLEASE READ CAREFULLY!

You Betcha!  Andrew is tougher than cancer!
UPDATE:
The past few days, Andrew has gone under many diagnostic tests for various reason.  Andrew had a c.t. scan yesterday to see if the fungal nodules found in his lungs went down and to see if there was anything attributing to Andrew's abdominal pain.  Andrew also got a MRCP, a specialized MRI, to get a more specific look at his abdomen, to see if the swelling around his pancreas had gone and to see if there is a pseudo cyst in the pancreas.  The good new is that all the tests were negative.  The c.t. scan showed no fungal nodules, as a result, he stopped a fungal anti-biotic to treat it.  The c.t. scan also showed that the swelling around the pancreas went down, but there was nothing conclusive around the abdomen, so we are waiting for the MRCP results.
G.I. may want to perform an endoscopy to see if there are any ulcers in the stomach or other issues.  
***UPDATE (2/16/): Andrew will indeed be getting an upper endoscopy right after or before his bone marrow biopsy, since he will be under anesthesia. 
Andrew's white blood cell counts continue to rise and other numbers continue to rise as well.  Which is as expected after his chemo and a good sign.  He is off all medicines except the pain pump that he is using for the abdominal pain.  The only thing holding him from getting home is him still being on iv pain meds.


Uncle Albert, Auntie Jenn and Cousin Margot
just in from California! Hurray!
UPDATE (2/17):  Andrew's mrcp and endoscopy came back and there wasn't any major finding.  The Mrcp showed the pseudo cyst found around the pancreas went down dramatically all on it's own!  Praise God!  It also showed the the tubes following from the pancreas were draining properly and smooth and straight.  The endoscopy showed the a little swelling around the opening in the stomach draining to the small intestines.  As a result, the g.i. doctors prescribed a special antibiotic that will linger in his stomach instead of spreading it systemically around the body. Also, all the pain meds that he has received isn't fixing his stomach issues, it's just masking them.  I had mentioned Andrew was on a pain pump for around the clock i.v. pain meds and how we were praying he would get off of them.  Well, another answered prayer.  Andrew transitioned to an oral drug that is actually working, after trying virtually all other narcotics.  We are continue to wait for the results of the bone marrow biopsy to see if Andrew is in remission.  We also are praying the potential match is indeed a match.  PLEASE CONTINUE TO PRAY UNTIL WE FIND THE RESULTS AND WE FIND OUT IF THE PERSON IS A MATCH.   Thank you everyone!

VERY IMPORTANT!  PLEASE READ CAREFULLY!
As I have explained before and asked for continual prayer, tomorrow Thursday February 16th,  Andrew will have another bone marrow biopsy if the chemo worked and he is cancer free.  IN ORDER FOR ANDREW TO HAVE  A CHANCE TO GET TO A BONE MARROW TRANSPLANT,  ANDREW WILL NEED TO BE CANCER FREE.  So, we are asking all our prayer warriors for a favorable result:
NO CANCER!!!

Also, we have some good news!  There might be a seven out of eight marker bone marrow match.  The only info that we have is that he is a male and he gave blood to have his dna molecularly tested to see if indeed he is a good match.  SO, PLEASE PRAY FOR A MATCH AND THAT THIS PERSON WOULD GO THROUGH WITH THE BONE MARROW DONATION.   

PLEASE...PLEASE PRAY SPECIFICALLY FOR THESE TWO PRAYER REQUESTS.  

The past few weeks, God has been giving me a verse over and over by friends and family.  I read this verse to Andrew the other night before I left for home and when I got home, family friend who was the pastor of the first church,  Pastor Mark Kim sent Andrew this verse with Andrew's name before each sentence.  Isaiah 41:10:

 So do not fear, for I am with you;
   do not be dismayed, for I am your God.
I will strengthen you and help you;
   I will uphold you with my righteous right hand
.

I have read and heard this verse many time in my life, but it seems so appropriate these days.  God is my God and he will hold me and keep me.  His righteous right hand can tilt the earth's axis with a simple flick.  So, why can't he do the same with Andrew's cancer?  Whatever the outcome, I trust in his sovereignty and will.  Another word that seems to be popping up the past few days is surrender.  It seems that God is asking me to surrender and let go.  I was in the chapel yesterday before an important meeting with Andrew, our family and doctors to go over his diagnosis and outlook ( I will put another post on this alone, soon), when a receptionist at the outpatient clinic, Trina, was praying and reading Bible.  I have seen her a few times in the chapel and I know how sweet she is by our interactions with her in clinic.  She came out to me to say hi and I told her how anxious I was to be in that meeting to tell Andrew his outlook.  Trina, said to me to surrender and let God.  She ended up praying for me and I felt a burden lifted.  I had several people pray while we were in meeting and God definitely heard our prayers, because the meeting went well as it could have.  Thank you everyone who prayed, because our God answered!

Please share this blog with as many people as possible, so we can spread bone marrow awareness around the world.  Please read the previous post to get info on all the bone marrow drives in the east coast this week:


http://andrewsfightonestepatatime.blogspot.com/2012/02/update.html 


Please pray for a great turnout and that God would stir people to act on their faith and convictions!


Again, if you cannot make a bone marrow drive, please goto 
bethematch.org to register to get a very quick and simple at home kit to possibly save Andrew's life. 
Also, check out these sites that specifically are geared toward asian bone marrow donation:


(click) http://a3mhope.org/ 


(click) cheekswab.com


PLEASE SHARE THIS LINK WITH OTHERS TO RAISE BONE MARROW DONATION AWARENESS AND TO SHARE ANDREW'S STORY.  CLICK ON  THE SHARE IT BUTTON ON THE RIGHT SIDE MARGIN NEXT TO THE ABOUT ME LINK. 


Again, it would be greatly appreciated if you can leave a word of encouragement or anything that would life our spirits. Even a good joke or two-)

Love,
Joe and Jennifer Park






Monday, February 13, 2012

UPDATE...

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ATTENTION!!! HERE IS A LIST OF BONE MARROW DRIVES GOING ON THIS WEEKEND FOR ANDREW AND OTHER'S NEED OF A LIVE SAVING TRANSPLANT!


There will be four bone marrow drives this week at various locations in the east coast.  Here is a list of them.


This particular drive is being held at Open Door Presbyterian Church in the Northern Virginia area, organized by my cousin Pam Lippincott.  If you are in the area, PLEASE GET TESTED!!!!    

For those that are in the New Jersey/New York area, please check these venues:


Thursday, February 16 at Rutgers Korean Christian Fellowship - after their meeting at 9:45 p.m.
SERC Reading Room
Science and Engineering Resource Center
Rutgers, The State University of New Jersey
118 Frelinghuysen Road, Piscataway, NJ 08854-8019

Sunday, February 19th at Grace Community Church
After the 2 p.m. Service
142 Sand Hill Road
Monmouth Jct., NJ 08852-3103

After the 5 p.m. Service
62 Cedar Street
Ridgefield Park, NJ

Sunday, February 19th at The Salvation Army Community Church - Korean NJ Church (Between 2p.m. - 7p.m.)
380 South Van Brunt Street
Englewood, NJ

Here a few more important drives as well:
-http://www.cheekswab.org/2012/02/04/february-drives-umcp-gwu-evms-gmu-odpc/


UPDATE: Andrew has been home only one night for the past 26 nights. Andrew has been fever free for the past 48 hours and his counts are rising as we speak. The major hurdle Andrew needs to get over in order to get home is getting off the i.v. pain meds for his stomach pain. Yep, the same pain that we have been dealing with the past 3 years, but he doesn't have pancreatitis. That is why the g.i. doctors, which were called in today, want to check his abdomen via ct scan and a special mri called a mrcp.
Andrew had a chest x-ray done yesterday and it revealed a possibility of a fungal pneumonia, so a ct. scan of his lungs will be done tomorrow the same time as the ct scan for the stomach.
Andrew's appetite is nominal and he seems to be doing alright considering that he's been in the hospital for over 3 weeks.

I ask that you lift Andrew up for a few prayer requests:

*** Andrew will be having his "big" bone marrow biopsy this Thursday, to see if his cancer is in remission. PRAY FOR REMISSION AND CONTINUED HEALTH!
If he is in remission, he will be able to get a transplant, but the issue becomes
find a donor match IMMEDIATELY!
If Andrew still has cancer in his body, he will have to under go more chemotherapy, which will be more intense than the first round, which was strong to begin with.

***Pray not only for physical strength, but for mental strength as well. I know that he gets discouraged at times because he has been stuck in the hospital so long.

***Please pray for Jennifer and myself, as we are severely burnt out.

I know that many of you who attend Calvary were notified of an URGENT PRAYER REQUEST, that was rather vague, asked for immediate prayer and that asked for privacy until further notice.  I appreciate the privacy you have given to me and my family.  When the time is right, we will let you know the specifics.  In the mean time, pray for the aforementioned requests.


Love,
Joe



*** JENN AND I HAVE A SPECIAL REQUEST:
CAN YOU ALL TRY TO LEAVE SOME WORD OR ENCOURAGEMENT, BIBLE VERSES OR ANYTHING THAT WILL HELP US REFUEL AS WE ARE JUST TUCKERED OUT RIGHT NOW MENTALLY AND PHYSICALLY.
THANK YOU!  
AND PLEASE SPREAD THE WORD ABOUT THIS BLOG!

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.