Thursday, May 31, 2007


Our day started at 6:30 AM today. We quickly got Elyse ready and fought traffic all the way down to CHLA. We got there at 8:00AM to register and have her vitals taken. Our nurse had her blood drawn for lab by 8:30AM. We had to rush so that we could get a true Cyclosporine Level since we had given her a previous dose at 8PM the night before.

Chemotherapy started around 10:30AM and lasted for 2 hours. She had the chemo dripping in through her PICC line attached to her left leg and a blood pressure monitor strapped to her right. Amazingly, she slept through most of it, only to wake for food and diaper changes. I'm not sure if the Chemo is taking a toll on Elyse, but she is more irritable than before. Susan and I know intuitively, that something is hurting. I wish she could tell me exactly what is bothering her so that Susan and I can ease her discomfort. Unfortunately, we have to play detective and try to figure out what to do.

Another concern is the amount of formula Elyse is consuming due to the decadron. Elyse's doctor cut her decadron dose by half (a small 1.5 mg pill the size of a rolled oat), but he explained that this new dose is still a lot for a small body to take. We started to substitude her formula with unflavored Pedialyte when she cries for food after less than one hour after her previous feeding. As you can see from the pictures, she has gained an alarming amount of weight on her face, tummy, arms and legs. Susan and I are afraid that she will get used to consuming this much food even after we stop giving her the decadron. A parent's heart worries about many little details of their child's life.

The Marrow Drive:
Ready, set, go!!! Elyse's first bone marrow drive is on the way thanks to my friend Daniel Ra. Anaheim Korean Presbyterian Church is hositng AKPC Concert Night this Saturday (June 2) and they've provided a marrow drive table in a prime location. Daniel will also show Elyse's DVD along with a strong request to join the marrow registry. He also mobilized church volunteeres to help A3M. There will be around 200 in attendance for the concert and I hope we can get all 200 to sign up. Please ask your friends to attend and register there if they have not done so already. You can download the flyer on the links section on the right.

Korea Daily News - Interviewed today
Korea Times - Interview tomorrow
CGNTV - Spoke with Grace getting DVD, pictures and literature ready for her
ABC News - will keep you posted

오늘 하루 시작은 오전 6시30분 부터 였다. 소아병원에 8시에 도착 해 8시30분에 피검사를 마쳤다. 어제 저녁 8시 약 복용후 확실한 시클로스포린 수치수를 알아보기 위해서 였다.
10시30분 부터 시작된 화학 요법 치료는 2시간나 계속 되었으며 지원이의 왼쪽다리에 있는 PICC 줄로 통해 약이 들어가는 동안 오른쪽 다리에는 혈압을 재는 기계를 부착했다. 분유를 먹이고 기저귀를 갈을 때만 빼고 치료받든 동안 잠을 잤던 지원이은 다른 때와 달리 무척 민감했다. 무엇인가 불편하다는 것을 느낄 수 있었지만 말을 못하는 지원이를 바라만 봐야 했다.
또 다른 관심사는 데카드론 약 때문에 먹는 분유의 양이다. 의사는 처방을 반으로 줄였지만 그것도 지원이 같은 아이에게는 많은 양이다. 분유 대신 Pedialyte을 먹이기도 하지만 사진에서 볼수 있듯이 얼굴, 배, 팔과 다리에 살이 많이 올랐다. 혹시나 치료가 끝나도 게속 이렇게 먹으면 어떡하나라는 걱정이 생긴다.

골수 기증자 등록 운동:
첫 번째 기증자 등록 운동이 6월2일(토) 아나하임 한인 장로교회에서 있다. 200명의 관중들이 참석할 이번 집회에서 많은 사람들이 등록하길 바란다.

중앙일보 - 인터뷰를 마침
한국일보 - 내일 인터뷰 약속
CGNTV - DVD, 안내서를 전할 예정
ABC 방송국 - 진행중

Strategy Session

Crunch Time! Time to take action!

Elyse has another Chemo treatment tomorrow. My mom's not feeling well this week, so we are a bit short handed. I will be at home while Susan takes Elyse to the hospital tomorrow. Elyse is in good generally health. We are still waiting for lab results from Cincinnati to see if this is a genetic form of HLH.

It was a busy day today, but really productive. My cousin Kyung Sun and I went to the Asians for Miracle Marrow Match today and met with Sharon Sugiyama (A3M Director) & Madhuri Mistry (PR & S. Asian Outreach & Recruitment Coordinator) for a quick interview for Elyse's DVD. These two women are wonderfully compassionate individuals who have a deep desire for all the patients who are looking for a marrow match. The first thing that struck me as I walked into the A3M office was the wall of victims of blood diseases that passed from this life without finding a match. I found a picture of my friend Mindy among the faces. I had forgotten how young she was when leukemia took her life. I hope to change the odds of survival for Elyse. There was a smaller wall with the faces of heroes who have willingly given of their time, blood and marrow to save lives. Unfortunately, the faces of victims out numbered those of the willing donors.

Exposure is key. Madhuri is trying to set up an interview for us with ABC news by next week. I hope to get Elyse's story out to all the Asian communities - Southern California, Dallas, Atlanta, NY, New Jersey, Seattle, Washington D.C., Maryland through network news. My long shot dream is for Elyse to meet Lance Armstrong, a cancer survivor and founder of the Lance Armstrong Foundation. I think that he can give us the push that we need to get people more aware of the need for Marrow Donors in the Asian Community. Email me if anyone knows how we can make this possible.

Kyung Sun worked on the DVD till 1:30AM today. We have a rough 8 min. - 30 sec. cut (English), 8 min. (Korean) & a 4 min. for Churches. Kyung thinks that 4 minutes is too short to tell the story, but controlled her urges to push the delete button just to make me happy. I will review it again and Peter Ha will do a once-over and clean everything up for us.

The Strategy meeting was great. Thank you all for your contacts. Please don't hesitate to contact me if you know and organization who is willing to do a bone marrow drive for Elyse. To date, I had 4 people requesting to sign up by mail, 20 people to sign up as a group (way to go Amy!!), and 15 from KCM (Eyvette Min's loving efforts). We have the following organizations on board for the drive: New Life Community, Lighthouse Mission Church, Hillside Ministries, Los Angeles Christian Presbyterian Church, Korean Campus Crusade for Christ, Anaheim Korean Presbyterian Church Concert Night, this Saturday (more info to follow). We are working on countless more organizations including corporate organizations.

Media Contacts in the works:
CGNTV - 2 Milli0n viewers nationwide -thanks Song!
Korean TV, Newspaper & Radio - Sue Choi (A3M)
ABC News (local & nationwide)- Madhuri Mistry (A3M)
Steve Harvey Morning Show - Susan Kim's Contact

Please let as many people you know about Elyse's story and please direct them to this site. Thanks Judy for linking us to your site (

내일 화학 요법 치료차 병원에 간다. 지원이 할머니 몸이 편찮아서 아이들 돌보는 손이 모자라다. 내일은 수잔 혼자 지원이를 데리고 병원에 갈것이다. 지원이는 계속 모든 치료를 잘 받고 있다.

오늘 하루는 무척 바빴지만 많은 것을 했다. 골수 기증 협회를 방문 해 DVD를 위해 샤론과 메드후리를 만나 인터뷰를 했다. 협회 사무실을 방문 했을 때 벽들에 걸려 있는 사진들을 보았다. 한쪽벽은 기증자를 찾지 못하여 세상을 떠난 사람들이었고 그중에는 우리의 친구 민디도 있었다. 너무나도 젊은 나이에 떠난 민디가 다시 생각나는 순간이었다. 다른 벽에는 골수를 기증한 사람들의 사진들이 있었다. 기증자를 찾지 못해 죽은 친구들의 숫자가 기증자들 보다 훨씬 많은 것을 볼수 있었다.

지원이의 투병이 많은 사람들에게 알리는 것이 현재 목표이다. 메드후리씨가 ABC방송국에 알리어 홍보하자는 제시를 했다. 미국 전 지역에 있는 아시안들에게 방송이 전파되길 바란다.

사촌 누나 경이 새벽 1시30분까지 DVD 작업을 했다. 모든 작업이 끝나면 곧 여러분에게 나눌 수 있도록 준비하겠다.

4명이 우편으로 기증자 등록을 하겠다고 연락이 왔으며 많은 교회와 단체들이 등록 운동을 하겠다는 연락도 받았다. 여러분의 헌신과 관심이 끊이질 않길 바란다.

Tuesday, May 29, 2007

Another Blood Test - Progress Update

Went back to Children's Hospital today for Elyse's twice a week blood test. Susan thinks that Elyse is getting into the routine of things now since she was the calmest we've seen her at the hospital. She sat still (without crying) for the height, weight, temperature reading & blood pressure measurements. She even tolerated the blood draw for labs.

It took longer than normal for her blood test this time because of a call we made the day before concerning some discoloration of in both her arms. They seemed a bit bluish green for some reason (see pictures from 5/28). We had to wait for lab results to see if something odd showed up. The RN and a Doctor agreed that her arm looked "dusky," but could not give us a conclusive reason for it. We hope that it is nothing serious. We had to wait for labs till 4:30pm and the blood tests did not show anything out of the ordinary.

Susan and I noticed that Elyse's hair is falling out more as the Chemotherapy continues (see picture from 5/29). We took some pictures at the hospital today so we can share the experience with you all.

We headed directly to NLC to meet with my cousin Kyung to view the progress of the DVD after our hospital visit. She wanted input from us and I asked Pastor Chris & JP view it as well. It looks great. It's no easy task to cut a 20 minute clip down to 5 minutes, but, she's doing a great job, I can't believe that our armature clips look so good. We will post the video on YouTube and have a link here on Elyse's blog site once it's done.

UPdates to this site
#1 ~ I added a "Hit Counter" at the bottom of this page because I was curious to see how many people are visiting Elyse's site. What a surprise to see that the number of visitors jumped from 17 last night to 198 at 11:22 PM today. Thank you for visiting and the encouraging emails.

#2 ~ I also added a bone marrow drive count on the top of the page so that we can all track donations as we prepare for the drive. I will go out on a limb and declare a 3,000 new donor goal. Let's do our best to meet or beat that goal. Please spread the word and update me if you know who registered on Elyse's behalf.

#3 ~ Brother Wei in London has offered to make a website for Elyse. I will give you more information as I get updates from Wei. Thanks Wei.

Did you know that you can register with the National Marrow Donor Program by mail?
Here's how:

1) Email name and address of any willing donors (Korean if possible) living anywhere in the U.S. to Elyse (
2) We will send them a consent form by mail.
3) They should fill out and mail the form back.
4) A3M will mail out a Buccal Swab Kit with instructions.
5) Willing donor can take the swab samples themselves
6) Mail swab back in the self address - postage paid envelope
7) They will be registered with the National Marrow Donor Program
8) Fill out and retain the Donor ID Card
9) Be a Willing Donor when they get the call

매주 2번씩 하는 피검사를 위하여 오늘 병원에 갔었다. 이젠 지원이도 병원에서 하는 모든 점검에 익숙해 져가는 것같다. 키, 몸무게, 체온을 재면서 울지도 않고 잘 견디어 내는 모습이다.
오늘 검사 결과는 다른 때와 달리 오랜 시간을 기다려야 했다. 팔에 파란 빛이 있어 확실한 이유를 알기위한 검사 결과를 기다려야 했지만 병원측에서도 극히 잘못 된것은 발견하지 못했다. 화학 요법 치료때문에 지원이 머리가 많이 빠지는 것을 느낄수가 있다. 사진모음에서 지원이의 모습을 볼수 있다.
교회에 가서 사촌누나 경이 작업하고 있는 DVD를 보았다. 20분이 넘는 분량을 5분으로 줄인다는것이 어렵지만 좋은 작품이 만들어 지고 있다. 앞으로 YouTube에 비디오를 업로드 할 예정이다.

우편상으로 골수 기증자 등록을 할수 있는 방법을 알리고자 한다.
1) 미국에 거주하는 자로써 이름과 주소를 으로 이메일로 보냄
2) 동의서를 우편으로 발송함
3) 동의서에 서명 후 반송
4) 동의서를 받은 후 아시안 골수 기증 협회에서 면봉 세트를 우편으로 발송
5) 안내서를 따라 면봉으로 샘플을 체취한 후 준비된 편지봉투로 반송
6) 기증자로 등록 된후 어떤 환자와 일치한 기증자로 발견되면 기꺼이 헌신을 요구함

Monday, May 28, 2007

Blood Test & Preparations

Hello Family,

We will be taking Elyse to the hospital for her blood test tomorrow. Elyse's arm area has been a bit blue the past couple of days. The on-call doctor in the hematology dept. told us that we should check her red blood cell count tomorrow. I hope that it is nothing.

I will be looking at the 20 min. DVD with Susan, Pastor Chris & JP tomorrow afternoon. We need to further edit this down to 5 minutes. My cousin Kyung told me that she is pleased with what we have so far. Pastor Chris will help with the Korean subtitles.

Please take a look at the new picture post of all of our girls sitting side by side. It's hard to get a decent picture of 3 - 3month old babies, but we got one out of 15 shots.

내일 지원이를 데리고 피검사 하러 병원에 간다. 지원이 팔에 파란 빛이 돌아 병원에 연락하니 적혈구 수치를 알기위하여 피검사를 하자는 것이다. 아무일도 없기 바란다.

내일 사촌누나 경과 수잔 그리고 교회 목사님들과 DVD 마무리 작업을 하고자 한다. 20분 내용을 5분으로 줄어야 하는 작업이다.

사진모음란에 우리 셋 쌍둥이들의 사진을 보기 바란다. 3개월 막 지난 아이들의 사진찍기가 힘들었지만 15번 찍은 것중에 가장 잘 나온 한장이다.

Sunday, May 27, 2007

Elyse's DVD and Update

Hello Family,

My cousin is still plugging away at the DVD. She took 150 minutes worth of footage and chopped it down to 20 minutes. I will be reviewing what she has so far this week and make a final 5 minute cut.

In the mean time, my sister has been busy in D.C. She's been telling Elyse's story to everyone she knows and has been getting a lot of positive feedback and people who are willing to open up their venues for bone marrow donations. One contact is going to solicit bone marrow donations at his fundraiser function for Hillary Clinton. Go Sis!!! She is trying to rally 200 new registrants through her contacts and she is contacting more people as we speak.

Thank you for your continued support. See you all at the Wednesday meeting.

사촌누나가 아직도 DVD 작업을 하고 있다. 150분의 내용을 20분으로 줄이고 앞으로 그 내용을 5분으로 줄이는 작업을 해야 한다.
내 누나는 워싱턴 디시에서 지원이의 투병을 많은 사람들에게 알리고 있고 힐러리 클린턴 모금행사에서 200명의 골수 기증자 등록을 목표로 일하고 있다.
여러분들의 지원에 감사하며 수요일 모임에서 만나자.

Saturday, May 26, 2007

Bone Marrow Drive

Hello Family,

We took Elyse for a blood test on Friday and the results showed that her hormone level was high, so her doctor reduced her cyclosporine dose over the weekend. You would think that she would be an old pro at the process of getting her blood drawn by now, but she still hates going to the hospital for any reason. She cries the whole time we are there, but we can't blame her after all the poking and prodding she's had to endure.

My cousin Kyung Sun and Peter are hard at work getting the DVD wrapped up. The outline of the video will have the Doctor describing the disease, our brief history and introduction of Elyse and her sisters and finally a request for participation in the bone marrow drive. We are planning to have a 5 min. DVD for churches and organizations to view. Thank you to my cousin and Peter!!!

Wednesday will be our brainstorming and strategy meeting. I am still hoping to reach 3,000 new registrants for the drive. I've been talking with JP, P. Chris and Young for their support and ideas. This might turn out to be a huge event as long as we can all move into action. I've requested an English & Korean flyer from Asians for Miracle Marrow Match (A3M). There are people gearing up to get sign ups as soon as we can get all the information together. We are targeting Southern California Churches (EM & KM), College Organizations (Christian and Non), Individual donors from the Community and friends and family. Jae Chun is working on contacting the Southern California KSA leader to get his cooperation as well. I would also like to ask for help to penetrate the Churches in Korea. Let me know if anyone has a contact who can help with this.

JP has been doing a lot of strategies for the Yu Family and I would like to ask him to preside of the meeting this Wednesday. There is nothing more comforting than to see how personally our friends have taken this bone marrow drive. I've had friends that have gotten angry at people that have shown indifference to our cause and the many emails expressing support and prayer have been an overwhelming blessing to us all.

Susan and I feel like we are seeing the words of God coming to life in our lives. The following verses come to mind as we bask in the loving kindness you all have been showering down on us.
Pr 17:17
A friend loves at all times, and a brother is born for adversity
Pr 18:24
A man of many companions may come to ruin, but there is a friend who sticks closer than a brother.
Pr 27:10
Do not forsake your friend and the friend of your father, and do not go to your brother's house when disaster strikes you-- better a neighbor nearby than a brother far away.

May the Lord bless you all and may his face shine brightly upon you and your family.

P.S. let us remember Ellen's mother in our prayers as she recovers from her cancer surgery. She will have to go through chemotherapy soon, so please pray and call her so that she may be comforted.

지난 금요일 지원이의 피검사를 위하여 다시 한번 병원에 갔었다. 피검사 결과후 호르몬 수치가 너무 높아 시클로스포린(홀몬약)를 주말에는 낮으라는 의사의 지시가 있었다. 지금쯤이면 병원이 익숙 할 것 같지만 어떤 이유에서 병원에 있는 동안 울음을 그치지 않는다. 여지껏 너무 많은 주사바늘과 아픔을 겪어 왔기 때문에 지원이를 원망할 수 없다.

내 사촌 누다 선경과 피터가 DVD 마지막 작업 중이다. DVD에는 의사가 병에 대한 설명과 지원이와 동생들의 이야기 그리고 기증자 운동에 참여를 부탁하는 내용이다. 이 DVD는 여러 교회와 단체들에게 보여줄 예정이다.

수요일(5/30)에 기증자 등록 운동 준비 모임이 우리집에서 있을 예정이다. 3천명의 등록자를 모으기 위하여 여러 모양으로 준비를 하고 있다. 교회 목사님들 그리고 다른 사람들이 여러 기관에 연락 중이다. 혹시 여러분들중 기증자 등록 운동을 도와줄 기관을 알고 있다면 연락을 부탁한다.
하나님의 말씀이 우리 삶에 살아서 역사하는 것을 새삼스럽게 느낀다. 여러분들의 격려와 기도가 너무나도 큰 힘이 되는 것을 감사하게 생각하며 하나님의 축복이 여러분에게도 임하기를 기도한다.

P.S. 엘렌 어머니의 암 수술이 잘 끝나 다행이다. 빠른 회복과 앞으로 있을 항암 치료도 잘 이겨낼수 있도록 계속 기도하자.

Thursday, May 24, 2007

Please update your bone marrow information

May 24, 2007
Hello Family,

I spoke with Pastor Sean last night. It was a great encouragement to receive prayer and just talk. We had him on speaker phone since we were taking care of our girls at the time. He offered to send out a mass email to the YWAM in Korea to ask for their support in starting a bone marrow drive. Thank you Pastor Sean, I will get the Korean literature ready by today and get it up on this blog site. He also asked me how he can update his donor information and I thought that this would be a good opportunity to inform people how to do this if they had registered in the past.

Here is the link:

Go in and fill out as much information as possible and remember to fill-in your email address at the bottom so that you can receive a confirmation once the change has been made.

If you registered in the past, you can also give another sample during the bone marrow drives.

We finished filming for Elyse's video yesterday. It was a difficult and tearful process to relive the events leading to the discovery and current treatment of Elyse's disease. What's more difficult is the thought of losing her to this disease because Susan and I didn't do enough to get the bone marrow donor that she needed. I don't think that I could live myself is this was the case. It is likely that Susan and I will not be a match for her, which leaves us with the helpless & desperate feeling to know that we have to rely on others for the survival of our daughter. We pray that the Lord Jesus will move the hearts of those within our community and abroad to become WILLING donors. 50,000 registered Korean donors out of 6.5Million is not a promising odd. Let us get the word out and save Elyse.

Thank you.

어젯밤 샨 유 목사님과 통화를 했다. 기도와 대화로써 많은 용기를 얻었다. 한국 YWAM 지역국에 전자메일을 보내겠다고 약속을 하면서 자기 기증자 정보를 어떻게 갱신 해야 하는 지 물어봤다. 만약 여러분 중에 기증자 정보를 갱신 해야 한다면 다음 사이트에서 할수 있다. 전자메일 주소를 입력하면 확인 메일을 받을 것이다.

어제 지원이 홍보 촬영을 다 마쳤다. 지원이 병과 치료 과정을 다시 한번 회상하는 것이 힘들고 또 많은 눈물을 흘렸다. 무엇보다도 나와 수잔이 골수 기증자 찾기 운동에 최선을 다하지 않아 지원이를 잃어 버릴 수 있다는 두려움을 버리기가 힘들었다. 만약 이 두려움이 현실로 나타난다면 아마도 나는 내 자신을 용서하지 못 할것이다. 의학상 나와 수잔은 일치가 안 될것이기 때문에 다른 사람에게 우리 딸의 생명을 맡겨야 한다는 생각에 무력하고 무모한 부모가 된 기분이다. 650만 한국사람중 약 5만명이 골수 기증자로 등록 되어있다는 것에 기증자를 찾는 것은 무척이나 어려운 상태이지만 우리 주님께서 많은 사람들의 마음을 움직여 기증자로 등록하고 또한 기증자를 찾을 것이다.

Tuesday, May 22, 2007

May 22, 2007

Next Stage of Treatment

Hello Family,

We met another family with twin boys with HLH today. Carrie and husband Zander has identical twin boys, Ethan and Keen who have HLH. They are currently 7 months old and Ethan was diagnosed in February 2007 and started chemo treatments before Keen. Carrie mentioned that chemo is so toxic that it stunted Ethan's growth in comparison to Keen. We could clearly see the difference in size. They were adorable children with amazing blue eyes. We hope to keep in touch with them to learn from their experience and hopefully be a source of support. They both found marrow matches and they are awaiting transplant. God be with you boys!

Elyse had a busy day today(please see schedule below). She had a blood test, which came out more normal than it had been in 2 weeks. Her white blood cell count was low, but that was expected from her chemotherapy. The lumbar puncture was difficult to watch. They put a glob of numbing cream on the area of her back where the needle would go in then taped the glob in place for 30 minutes in preparation for the procedure. They drew the fluid in a small room with me and Susan holding on to her for support and my cousin Kyung documenting the whole procedure on video for the awareness DVD we are making. Dr. Hofstra (Elyse's Hematologist) mentioned how pleased he was with the results of the Lumbar Puncture. He was hopeful that Elyse would be in remission shortly. After today's results, she will get chemo treatments once a week and the dexamethasone (steroid) dose will be cut in half. We hope that this will curb her appetite a bit and bring down her chipmunk cheeks. The cyclosporine dose will go up since that count was a bit low. We are hopeful and praying every situation through each day as it comes. Thank you all for your support.

09:00 AM - Arrive at Hospital
10:00 AM - Draw Blood for blood test
11:00 AM - Blood Test Results
11:10 AM - Lumbar Puncture
12:00 AM - Chemo
01:30 PM - Doctor Appointment
3:00 PM - End Chemo
3:30 PM - See Diaper Rash Specialist
4:00 PM - Go Home

We are still gearing up for the bone marrow drive. My cousin Kyung Sun whom I mentioned before, is an award-winning documentary producer/writer based in Los Angeles, California. Her programs have broadcast nationally on PBS stations, including TEST OF COURAGE: THE MAKING OF A FIREFIGHTER, produced in association with ITVS, as well as on commercial television outlets. She is currently developing several documentary projects. She jumped at the chance to help Elyse when I called her last week asking for her help in making the DVD. She has been with us for the past two chemo treatment to film and help take care of Elyse. We will be meeting with Peter Ha this Friday to put the clips together and we should have a finished product by next week.

I know that it will not be an easy task to open the hearts of people whom we've never met. Please pray that our Korean community along with any other organizations would open up their resources and facilities for the marrow drive. You can also help by telling people about Elyse and getting their commitent to become marrow donors. Let's start the count now and keep track of those who are WILLING.

In my previous meeting with A3M, I asked them what was the largest number of bone marrow registrants they received for one person and they answered 2,000. This is not a competition for popularity nor is it something that Susan and I are doing for notoriety. Having faced the possibility of death of our daughter Elyse has shown us that we must take every negative energy and turn it into a positive. We hope that hearts will melt and be mobilized to action as they see the courage and sufferings of a 3-month-old baby girl going through the difficulties of chemo. Our goal is 3,000 new and WILLING donors by the end of this drive. That means another 3,000 names will be available in the National Marrow Donor Program database and possibly a better chance for Elyse and many who are still hoping and waiting for a match.

As my friend JP said, "We are not asking for money, we are asking for their blood." Your blood means life to many who are waiting and a good way to follow in the footsteps of Christ as he gave his blood so that many may enter into the kingdom of God.

Thank you.

Sunday, May 20, 2007

May 20, 2007


Elyse has her good and bad moments. I guess you can't have everything you pray for and the Lord has his perfect reasons. Chemotherapy has dropped Elyse's white blood cell count prompting her doctors to prescribe antibiotics. The antibiotics in turn has been giving her non-stop diarrhea for 3 weeks now. She has open sores in and around her butt area that look extremely painful and is the source of constant pain. But, like I said, she is a fighter. I know this because she still manages to reward Susan and me with a smile at our lowest moments, which makes us think that everything is going to be alright. But her hoarse cry still reminds of the reality of the difficulty of her medication and treatment.

Children's Hospital is finalizing documents to submit her information to the national bone marrow registry. In the mean time, Pastor Chris and I met with Sue Choi and Joshua, reps from the Asians for Micracle Marrow Match (see link). It was an informative meeting which opened my eyes to the state of the 1st generation church and brought about deep desires for our 2nd and future generation churches to become different. Refreshingly, we found out that 90-95% of bone marrow drives take place in a church facility. Not so refreshing are the following statistics: 30% of the congregation register at smaller sized churches, 10% register at medium sized churches and only 5% at mega churches. Even more disappointing is that these numbers are achievable only when the senior pastor is pushing and supporting the donor registry program at the church a 110%.

I am going to vent a little here. We Christians talk about salvation of the soul and our pastors preach about salvation almost every Sunday. But, a person has to be alive before they can receive the joyful message of salvation. I realized that you are literally saving a person by becoming a willing donor on the national bone marrow registry. Another interesting fact is if you are lucky enough to be a match and once the transplant is successful, you will literally change a that person's life since the recipient's blood type will change to the donor's blood type. Literal transformation!

Here is a brief description of the process:

How to become a donor:
1) Be between the ages of 18 and 60
2) Be willing to go all the way if you are called
3) Meet the health guidelines
4) Present a valid ID
5) Give a cheek swab (CSI style)

If you are a potential match:
1) Further tests to see if you are Elyse's perfect match
2) Donor decides whether or not to continue

Donation Methods:
1) Marrow Donation (35%) - Old style where small amount of marrow is collected from your hip bone. Anesthesia is used during this simple hospital procedure

2) PBSC (65%) - Receive injections of Filgrastim for 5 days to increase the blood-forming cells in you blood stream. You may experience flu-like symptoms for a few days. Blood is drawn from your arm using a sterile needle and passes through a machine that separates the blood cells. The remaining blood returns to your other arm.

Now, I would like to beg you for your help to save Elyse from future Chemo treatments and for her life. Please contact me if you know anyone in your circle who has the influence to arrange for a bone marrow drive. Churches, Christian Organizations, Non-Christian Organizations, businesses, etc. There is a 80% chance that Elyse will find a match within the Korean community. However, there is a 20% chance that the matching donor will come from other ethnicities. I am in contact with KCM (Korean Campus Mission) right now and I will be asking for Pastor Young and Bobby for help with KCCC (Korean Campus Crusade for Christ). This drive doesn't have to only take place locally in Southern California. The A3M team is willing to go out of state if a substantial drive is organized or the organizer can contact the local marrow donation organization. The bottom line is that the list will all go to the National Marrow Donor Program where Elyse will have access to matching donors. I will be contacting our church members and family directly for a brain storming session, but if you are reading this and can help us in any way please email me at

I wanted to thank my sister Shannon for dropping everything at work to spend sleepless nights at the hospital and at home taking care of Elyse, Faith & Erin. It would have been impossible to get through this without your invaluable help.


지원에게 좋은 결과도 있는가 하면 나쁜 결과도 있다. 계속 화학 요법 치료를 받고 있어 백혈구수치가 너무 낮아 다시 항성제 처방을 받았다. 처음 입원하여 항성제를 맞기 시작하면서 3주동안 설사를 해온 지원이가 또 다시 항성제를 맞아야 한다. 설사로 인한 심한 발진 상처때문에 괴로워 하고 아파하는 지원이지만 가끔 아빠와 엄마한테 웃음 선물을 줄때 마다 모든 것들이 잘 이루어 질것이라는 소망이 생기지만 지원이의 목 쉰 울음소리는 곧 현실을 알려 준다.

소아병원에서 지원이를 골수 기증 수령자 등록을 하는 중이다. 골수 기증 협회 사람들과 유익한 모임을 가졌다. 많은 한인들이 기증자로 등록되어 있지만 아직도 등록을 거부하는 사람도 있는 가운데 한인 교회에서 약 90%의 모든 등록운동이 진행된다. 그러나 교회에서도 전 교인의 약 5~30% 교인만 등록을 한다. 30%의 결과는 담임 목사님이 적극적으로 도와 주어야만 이루어 진다. 특히 큰 교회에서는 고작 5%가 큰 결과란다.

만약 여러분이 골수 기증자로 등록을 하려면:
1) 만 18세부터 60세사이
2) 어떤 환자와 일치 할 경우 끝까지 (검사 및 기증) 갈 수 있는 자
3) 일반적으로 건강한 자
4) 신분증이 있는 자 (운전면허, 주정부 발행 신분증, 아니면 쇼살 번호)
5) 면봉을 이용한 입속 조직 샘플

일치 가능성이 있을 때:
1) 정확히 일치 하는지 추가적인 검사
2) 기증자로써 계속 검사에 응할지 결정

1) 골수기증 (35%) - 골반뼈에서 적은 양의 골수 채취
2) 조혈모세포 기증 (65%) - 혈구 분리 기계로 조혈 모세포 채취

지원이가 이런 고통스런 치료가 필요 없도록 이젠 여러분의 도움이 필요하다. 한인 기관 혹 다른 동양인의 기관과 관련되어 있어 골수 기증 운동을 개최 할수 있도록 영향을 줄 수 있는 사람의 연락을 기다린다. 나성뿐만 아니라 미국 어떤 곳이라도 골수 기증자 등록 운동을 할 수 있다.

지원이의 고모 Shannon께 너무나도 고맙게 생각한다. 멀리 워싱톤의 자기 생활을 저 버리고 조카를 위해 밤을 새우고 우리 식구를 도와 준 고모께 너무 감사하다.

Saturday, May 19, 2007

Friday May 18, 2007

Around noon, I received a phone call from a nurse at the day hospital (outpatient clinic where chemo is administered) regarding Elyse's lab results from yesterday. Her potassium level was high. Her medications can cause her potassium level to increase temporarily but doctors ordered another blood test to see if it was a true high. The nurse suggested that I go somewhere locally to have her blood drawn asap so the results can be sent to Children's stat. Our pediatrician in Santa Clarita instructed me to go straight to their lab where they can draw blood from her PICC (peripherally inserted central catheter) line. When I arrived at the lab, I was told that they don't have the proper equipment to draw from a PICC line. Elyse and I headed to Children's Hospital where her Potassium level can be retested. The results came back after an hour just as we had hoped - it was not a true high although it was on the high side due to her meds.
정오쯤 외래 환자 진료소에서 전화가 왔다. 전날 피 검사에서 칼륨이 높은것으로 나와 의사가 다시한번 피검사를 하자는 것이었다. 간호사는 가까운 피 검사실에 가서 임시 도관을 통해 피검사를 받고 결과만 병원에 보내라고 지시했다. 지원이 소아과 의사소개로 간 검사실에는 도관을 통해 피 검사를 할 수 없다 하여 할 수없이 소아 병원까지 가서 피검사를 받은 결과 치료에서 나타나는 임시적으로 칼륨이 높다는 결과가 나왔다.

Tuesday, May 15, 2007

Elyse Day 15

May 15, 2007

Finally Going Home

Hello Family,

Elyse had to stay overnight at the hospital for observation due to high blood pressure readings after her chemotherapy. Her blood pressure reading went high as 160 over 90, which was dangerously high. The doctor prescribed a low dose of a fast working blood pressure medicine, which brought her blood pressure to normal levels last night. We will be leaving the hospital at noon today. Praise Jesus!!!

Looking at Elyse's swollen face makes me realize once again that chemotherapy is an extremely toxic drug. Susan and I are able to keep our emotions in check only because Elyse is taking the medication so well. Our daughter is a fighter and I believe that the Lord is going to make us all stronger because of this.

Susan and I finally realize first hand how difficult it must have been for God the Father to see his Son Jesus hang on the cross. It rips our heart and soul to see Elyse going through all of this at just 3 months. It must have been unbearable for God to see his Son on that day he was nailed to the cross for the sins of all. There is a disease more deadly than HLH, it is called sin. Jesus came to heal us from that disease. The cure to sin is easier than going through chemo; all we need to do is to accept Christ Jesus into our lives. It is God the Father who suffers most when he sees an unrepentant child dying slowly from the disease of sin. If you are reading this blog and you have not accepted Christ into your life, I ask you to reconsider and ask Jesus into your heart today.

Thank you for your prayers and comments. Keep visiting this site for updates. Pastor Chris and I will be meeting with Sue Choi from Asians for Miracle Marrow Matches this week to see how we can have the largest bone marrow drive in the history of L.A. Korea town. I hope that Elyse can inspire and touch the hearts of all Korean Americans as well as Koreans all over the world to be compassionate bone marrow donors. God bless you till tomorrow's post.

어제 저녁 지원이가 화학 요법 치료 후 혈압이 너무 높은 관계로 의사가 오늘 퇴원을 허락 했다. 지원이의 부은 얼굴을 보면서 화학 요법 치료가 얼마나 독한지 다시 한번 느끼면서 지원이가 너무나도 모든 치료를 잘 견디어 내며 싸우는 모습이 나와 수잔에게 힘이 된다.
생후 100일이 지난 지원이의 어려운 투병을 지켜보는 우리 부모의 마음은 정말 말로 표현 할 수 없도록 아픈 것을 느끼면서 우리 하나님 아버지는 사랑하는 자기 아들의 십자가 죽음을 지켜 보면서 느낀 그 아픔은 상상도 할 수 없을것이다. HLH 보다 더 무서운 병인 "죄"는 화학 요법 치료보다 훨씬 쉽게 치료 받을 수 있다. 그것은 바로 우리 주님을 구세주로 영접하는 것이다. 만약 여러분이 아직 주님을 영접 하지 않았다면 주님을 구세주로 영접하여 "죄"의 병에서 해방을 받기 원한다.
이번주 크리스 목사님과 아시안 골수 기증협회의 수 최를 만날 예정이다. 한인타운 역사상 가장 큰 골수 기증자 찾기 운동을 개최 할수 있도록 여러분의 기도를 부탁드린다.

Monday, May 14, 2007

Elyse Day 14

May 14, 2007

Dear Family,

More good news today. Elyse is noticably less swollen. Her once tight stomach, arms, legs and feet are softer today. The swelling on her face has gone down a bit (please see pictures of Day 14 - I will be adding more as the day progresses). Also, blood test results are showing that levels are going back to normal. White blood cell counts are still low, but overall much better than when she first came in.

The other source of discomfort for her now is her broken skin on her bottom side due to diarrhea. A skin specialist came in last Friday to take a look at her and suggest some treatment. I cannot see any improvement so far. They are now suggesting that we soak her bottom in a solution of warm water and iodine. Diaper changing time is very unpleasant for Elyse right now. Please pray for healing and that her diarrhea would stop soon.

Elyse will be getting chemotherapy today. She is usually in a lot of discomfort after chemotherapy and her swelling comes back. JP gave me the contact info for the Bone Marrow foundation so, I will have some more information for everyone soon.

여러분에게 아주 좋은 소식을 전할수 있어 무척이나 기쁘다. 지원이의 부은기가 이제는 많이 빠졌고 처음 입원 할때 보다 더 좋은 모습이다.
항성제를 맞아 며칠동안 설사를 하다보니 엉덩이의 상처가 장난이 아니다. 요오드와 물로 자주 닦아주지만 별 효과가 없는 것처럼 보인다. 엉덩이의 상처가 빨리 나을 수 있도록 기도를 부탁 드린다.
오늘 오후 지원이가 화학 요법 치료를 받을 것이다. 무척이나 힘들어 하고 또한 부은기도 다시 올것이다. JP목사님이 아시안 골수 기증 협회의 연락처를 주었다.

Sunday, May 13, 2007

Elyse Day 13

May 13, 2007

Hallelujah! Praise the Lord for his goodness! It's Sunday morning, Day 13 since Elyse had fever leading to this day. Susan called me with Elyse's update just now. The doctors made their morning rounds and told her that Elyse's spleen is back to normal. Both spleen and liver were so swollen that we had to go one size up for her diaper. Praise the Lord. They have also reduced blood tests to once a day. Blood test results are the real indicator of whether the treatments are working.

Thank you all for your prayers. We have been benefiting from your prayers from day 1 and the power of everyone asking for Elyse's healing is truly being answered by our Lord Jesus.

Matthew 7:7-11
"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened. "Which of you, if his son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!

Susan stayed overnight at the hospital and I was at home taking care of Faith and Erin. Jerry and Song came by with Evan to help out with the girls. Pastor Chris was here to check up on us and to help me fix my internet connection so that I could get Elyse's blog site going. Thank you for your support. It really helps tremendously!!!

Jay volunteered to baby sit with me this morning since we were short handed at home. He's been taking care of Erin ever since he got here. He already changed her diaper twice (one was the "big one"). Thank you Jay & Susan for your time, support and meals!

One step at a time - one day at a time.

Saturday, May 12, 2007

Elyse Day 11

Dear family and friends,

Praise the Lord for daily victories. The doctors drew lumbar fluid samples on 5/8/07 and found some HLH traces in the fluid. They wanted to do an MRI to see if it had effected her brain. MRI was scheduled for 5/11/07. Results came out today showing that her brain is absolutely normal.

In preparation she was not allowed to eat from 12:00 AM the night before. Susan and I were particularly concerned due to the side effects related with Decadron (steroid/one of 3 major treatment medicine) that causes her to be extremely hungry. How hungry you ask? The doctors told us of a case where a family had to put a lock on the refrigerator after their child finished everything in the refrigerator one night while being administered the same drug. We tried everything from Benedryl to pacifiers and counted the hours to the MRI. We were told that MRI was scheduled for Friday morning. We went in for the MRI at 12:00 noon. She had fasted 12 hours!!!

Her general condition today:

  1. Face and body extremely bloated
  2. Hungry from fasting
  3. Slowly losing hair - we can see strands of hair on her bed & clothes
  4. Still smiles when she sees her Mommy
  5. Low fibrinogen count (needed to clot blood) - Infusion today
  6. Diahrea from Antibiotics

Daily Victories:

  • MRI brain scan showed no abnormalities
  • Stopped Antibiotics
  • Cryoprecipitated AHF - brought up low fibrinogen count
  • Liver and Spleen swelling is slowly going down
  • Took off 2nd IV line on Elyse right foot
  • Took Elyse of IV fluids since she is eating enough to keep her hydrated