Wednesday, June 27, 2007

Elyse's Update



Thank you to the caring souls who joined the Bone Marrow Donor family this weekend. Your decision will give a 2nd chance at life to Elyse or one of many people waiting for a miracle match. You will be the source of a miracle in somebody's life! Please stay strong (& healthy) and be willing when you receive The Call.

Elyse has been steadily improving with the HLH 2004 Treatment Protocol (Chemo, dexamethasone & cyclosporine). Elyse's doctor, Dr. Hofstra has been closely monitoring her progress and it looks like she will be in remission soon. This news is bitter-sweet since we were told that the familial form (primary form) of HLH (also called FHL) will return quicker than the secondary form (the viral form of HLH). The time line is about 6 months, but it can be longer or shorter depending on how well we provide a virus-free environment for Elyse.

At this point we know that she has the familial form since one mutation in the munc gene was identified and due to her age at the onset of the disease. If the HLH surfaces again caused by a viral infection, chemo will not work as well the second time. This means that it is crucial that a marrow match is found in the shortest time possible.

CHLA BMT staff members have be searching the National Database and have not found a match yet. We are placing a lot of hope on the new drives that are being organized each day. Each day brings us closer to finding a match, but I can't stop thinking that there is an imminent deadline to the search in Elyse's case. We ask for your help to spread Elyse's story and cause an explosion of awareness for the need of willing bone marrow donors within your families, social/professional circles & in your communities. We are hoping that awareness will move people to action to register at one of our upcoming drives, register by mail or go beyond to host a drive.

Monday, June 25, 2007

Web Help needed


Hello Everyone,

We are in need of your assistance. Our web team has been working day and night from two continents to keep Elyse's site updated. Everyone involved gives their free time after hours to update Elyseyu.com while working and studying in the day time. If you are willing to help, please email us at contact@elyseyu.com . We appreciate your support.

Friday, June 22, 2007

Interview with Korean Radio Station

We had a phone interview with Radio Seoul AM 1650 this morning. Radio Seoul, as a major ethnic radio station, provides Korean language programs 24hours 7days a week. Radio Seoul coverage is approximately 80% of the total population in the Los Angeles County. They broadcast throughout Southern Californi and provide service to San Diego, Las Vegas, Hawaii (KREA), North Virginia [WPWC] and Maryland [WTRI]. The broadcast will be airing twice today (6/22) between 5:00 PM - 7:00 PM and tomorrow (6/23) between 9:00 AM - 10:00 AM. you can hear a live broadcast online please click this link and look for the live broadcast icon located at the top right corner of the page. I did my best with my limited Korean, but I hope we get the message across to our Korean community for the upcoming drives at Los Angeles Korean Methodist Church this Saturday & Los Angeles Christian Presbyterian Church (LACPC)on Sunday.

The interviewer told me that he will be at LAKMC tomorrow to register. He also arranged for us to get an interview with KTAN - TV Ch 18 for the 8 O'clock news at 8 PM tonight(6/22).

Susan and I usually just push our emotions way down inside so that we can conduct our daily lives. However, I can't hold back my tears during these interviews because it forces me to talk about what Elyse has gone through and what she will be facing after the bone marrow transplant.

Here is a list of upcoming drives this weekend. Please come out with your friends, relatives and neighbors to register.

Friday, June 22, 2007 ~Time: 5:00PM - 10:00PM
Crossroads Alliance Church
350 North Governors Ave
Dover, DE 19901
Contact: Cammy Lee Leukemia Foundation
(212) 290-2757

Saturday, June 23, 2007 ~ Time: 10:30AM - 4:00PM
Los Angeles Korean Methodist Church
433 S Normandie Avenue
Los Angeles, CA 90020
Contact: Ruth Cho (ruthcho@gmail.com)

Saturday, June 23, 2007 ~ Time: 11:00AM - 3:00PM
New Jersey Asian American Law Enforcement Officers Association Annual Picnic
Yelensic Park
Edison, NJ

Sunday, June 24, 2007 ~ Time: 3:00-5:00pm
Church of the Covenant
67 Newbury Street
Boston, MA
Contact: Cammy Lee 201-838-6573 or Carol Lee 617-512-9794

Sunday, June 24, 2007 ~ Time: 11:00AM-3:30PM.
Los Angeles Christian Presbyterian Church (LACPC)
2241 N. Eastern Ave. LA., CA 90032
LACPC Website
Contact: David Lee (213) 500-5241.

Sunday, June 24, 2007 ~ Time: 9:00AM - 6:00PM
Church of the Living God
117 North West Street
Dover, DE 19901
Contact: Cammy Lee Leukemia Foundation
(212) 290-2757

Thank you.

Wednesday, June 20, 2007

4 Month Checkup

We took all of our girls to their 4 month checkup today. Elyse's doctor at CHLA recommended that we hold off on their second set of shots till after the lab results from Cincinnati for all 3 girls. We were surprised to see that Erin is only a 1/4" shy of Faith's height. She caught up a lot. Elyse is falling a bit behind due to chemo. That is a point of concern for us, but we hope that she will catch up.

Our pediatrician, Dr. Peter Kim told us to start the girls on cereal today and gave us lots of other good advice. Their first solid food was given today. We have new pictures posted so that we can share this experience with you all. They are growing up so fast.

The drives are going well, but we are still waiting for THE ONE. It takes time for the cheek DNA samples to reach the lab and some more time for the results to post on the national database (Approx. 3 Weeks). So,if you received the consent form and swab kit by mail, please complete them and mail them back as soon as possible we mailed out about 200 and got back 11 so far.

We are so blessed to have so many people coming forward to offer their help. There is a concrete certainty that all 741 registrants who signed up on behalf of Elsye are 100% WILLING donors. I've had many people writing to us stating that they hope to be THE ONE to match for Elyse and that they would do anything to help. We are truly thankful and blessed by your words and deeds. We will have the "Encouragements" section up soon. Our web team will meet this week to discuss how we will improve Elyse's site.

Elsye has chemotherapy tomorrow morning. We will keep you posted. We will also share with you about the whole BMT process in the near future. Bless you all till our next post.

Sunday, June 17, 2007

Father's Day



Do you remember the nursery rhyme that asks 'What little girls are made of?' Well, in case you've never heard it, here's how it goes:
What are little girls made of, made of?
What are little girls made of?
Sugar and spice, and all that's nice;
That's what little girls are made of.
This rhyme sums up how it feels to be a father to three lovely girls.




This might sound odd, but it truly didn't hit me that I am the father of triplets until Susan placed all three girls on my lap to take this picture today. For some reason it just felt real with the three of them moving around and making noise in my arms. It was an incredibly overwhelming experience to know that these three girls were born to Susan and me. I couldn't stop laughing as Susan snapped over 10 shots of me holding Elyse, Faith & Erin (you can see the other photos by clicking on the photo link).
This joyful feeling was a combination of thankfulness that I could finally be a father, hope that my daughters will all grow up healthy, excitement to see who they will become & wonder at how God must feel holding all of us in his embrace.

For a few moments, I felt nothing but joy. All of the concerns and worries melted away as my three girls were in my arms comforting me.

There were many drives that took place today. Thank you A3M, AADP and Cammy Lee Foundation for all the work you are doing on behalf of Elyse. And thank you to all of our friends and family members who volunteered at the drives today. We look forward to seeing how many new donors registered and the number of new drives that we will have in the coming month.

One willing donor is all it takes to bring hope and life to an individual and everyone connected to that individual. Could you all imagine the celebration we will have the day we find a donor for Elyse? I would like to ask you to have that same willingness to be a donor for anyone else if you get THE CALL. There will be a family that will be celebrating just like we will be just because you were willing to save a life.

Friday, June 15, 2007

DRIVE DRIVE DRIVE

Hello Family,

Waiting is the hardest part of all this. Waiting to see if Elyse has the familial form of HLH, waiting to see if Faith and Erin also have HLH, waiting for the donor, waiting for the drive numbers. I guess patience is one real requirement of being a parent of a child who has HLH.

We have a lot of drives coming up. There were 2 today and we have a lot on Sunday. I wanted to thank Elyse's support group and ask for your continued support at each drive. We also have another big one in Philadelphia (Kayti) and we are planning a lot more including Chicago (Joy) and in California. This has become a lot bigger than what Susan and I could have imagined. It seems like the whole Asian internet community is aware of Elyse. We are getting donor requests form all over the U.S. and my aunt told me that strangers are coming up to her and asking her if she's heard about a 4 month old baby named Elyse, trying to solicit her to donate marrow. We have our friends and family members to thank for this. We are slowly starting to get drives going in Korea.

I'm almost done compiling some of the encouraging emails we've received. I will ask Wei and Kathy to help me post them on our site (http://www.elyseyu.com/). I'm sure you all will be encouraged, moved and energized by them as Susan and I have been.

Special thanks to Susan Kim for helping us sort emails. Thank you to Jae and Susan for the In-N-Out runs, coming over to help us AT NIGHT form L.A., your general care even with 3 children of your own. We are blessed.

Tuesday, June 12, 2007

Next phase of testing

Hello Family,

Today, we took Faith and Erin to the hospital for a blood test. We are testing to see if they are caring the gene for HLH. Results will come back from Cincinnati in a few weeks. You can see how our day went by viewing the new photos. It was a stressful time for us all, but we are hopeful that the results will come out in our favor. Thank you for your prayers.

There are drives happening in different parts of the U.S. now thanks to the help of friends, family, and new found friends who have taken the baton on Elyse's behalf. Thank you all for taking Elyse into your hearts and making things happen. I will share some of the encouraging emails we have received.

We would like to especially thank Wei Dang and Kathy Yoon who have been tirelessly updating Elyse's website for the past few weeks now. Between the two of them, Wei (in England) and Kathy (in Los Angeles) have been updating Elyse's website around the clock. Thank you both. Your work is keeping all of us connected.

Saturday, June 9, 2007

Progress Report

Hello Family (if you are visiting this site, you are family),

Thank Yous:
I forgot to mention the tremendous support we have been getting from Bobby Oh and KCCC. Thank you for your participation and continued support, it means the world to our family. Pastor Bobby & his wife Amy are expecting their first child in the coming months. Please keep them in your prayers.

New Drives & New Friends:
There are lots of drives being set up as we speak. Pacific Crossroads Church possibly June 16th. Thank you PCC, Jeffrey Hamamoto and Ruth for pushing this drive. Our new found friends and partners, Kayti Chung in Philadelphia and Joy Park in Chicago/Houston are working hard to get drives going in their areas. Thank you both!!!

Spreading the News:
We were also contacted by KoreAm Journal to do a story on Elyse. Jaynry Mak, our favorite politician in San Francisco is helping us to get an article out to the local newspaper and contacting local Korean businesses for their support. Word about Elyse is also spreading fast through personal emails and blog groups listed on our "affiliates" page. Our website “hit” statistics show that 75% of its visitors are new. Thank you all for reaching into your contacts and spreading the word.

Personal Comments & Realizations:
We've had so many encouraging emails and support just in the past few days. I will compile some of them and post them on Elyse's site. I know that "Elyse's Team" will be blessed and energized by the encouraging words.

Those of you that know me and Susan know that we are not overly emotional people, but we have been moved to tears more in the past month than ever in our lives. We are learning that there are people who care and share in our struggles just because they want to see a child (Elyse) get a fighting chance at life. My phone call to Kayti assured me of this when she said "I want to be Elyse's match."

Elyse’s treatment:
Susan is reading up on the whole Bone Marrow Transplant (BMT) process. Cammy Lee of the Cammy Lee Leukemia Foundation is a surviving Leukemia patient and she called Susan and told her about the recovery process from the BMT. We are learning that the transplant is just the beginning of the curing process. We have to look at the recovery as a 2 year event, where we have to be extra careful that Elyse does not catch a cold or have an accident where she would bleed since her immune system will be down after the BMT. We know of 2 cases where the BMT recipient died of pneumonia after their BMT. Elyse's doctor told us that the survival rate after the BMT is 70%. This rate is in direct correlation to the recovery time before the immune system from the donor's bone marrow fully takes over within the recipient's body. I guess we are jumping way ahead here. We need to find a matching donor first.


The first half of the test from Cincinnati came back negative. They tested for the most common form of FHL (mutations in the gene-encoding perforin). They are now testing for the uncommon form (defective Munc13-4 gene). Regardless of the final results, Elyse’s doctor told us that he believed that this is a form of FHL because statistics show that the onset of FHL usually occurs within the first two years of life. Since Elyse falls under this static, there is a 25% risk that each young sibling will have FHL. Consequently, CHLA will schedule a blood test for Faith and Erin. Susan and I are not looking forward to this. Susan will request that an IV nurse do the procedure since it is difficult to find a vein in such small children. Please keep us in your prayers.

Thursday, June 7, 2007

Giving back to Childrens Hospital LA (CHLA)

Hello Friends,

Elyse received a great deal of support and top care form CHLA when she was hospitalized. She had many transfusions of blood and platelets before her chemo treatments. CHLA opened up their blood banks for Elyse when she was pale and didn't have enough blood or platelets to sustain her. It's time to give back!

JP spoke with the blood bank at CHLA and set up a blood drive on behalf of Elyse.
Date: July 21
Time: JP arranged for everyone to go after hours!

Please sign up with JP youth@nlifec.org

Let us flood the bank with blood! Giving blood also saves lives. I saw first hand how Elyse came more to life with each transfusion. I am asking all of Elyse's supporters to participate. I will definitely be there.

Wednesday, June 6, 2007

UCLA DRIVE A BIG SUCCESS!

Thanks to Eyvette, we had 91 new bone marrow donors register today! Eyvette, you've made a huge difference in Elyse's chances of finding a match. I am amazed. Thank you everyone who are now part of the Marrow Donor Community and welcome!

Sorry, no new photos lately. We've been really busy and tired. Susan has a cold and we've been staying up longer and waking up often since Elyse is showing signs of wear form the Chemo and medications. She wakes up more during the night then before. We are concerned about how much weight she's gained since she's been on decadron. We hope that the dose will come down soon.

We were contacted by two bone marrow organizations today. Cammy Lee Leukemia Foundation (CLLF) located in NY and serving the east coast and Asian American Donor Program (AADP) serving the Northern California area. They will feature Elyse for their Korean American Marrow Drives. We will mail out Elyse's DVD today. Our help pool has grown a little larger today. Thank you Cammy and Asia for contacting us. You can get more information at their websites. Please contact them if you are able to host a Bone Marrow Drive on Elyse's behalf as well as for the many patients who are waiting for a miracle match.

Elyse's DVDs are on YouTube. You can view them by going to www.elyseyu.com and clicking the "media gallery" link. We also have Korean subtitled versions so please email me at contact@elyseyu.com if you need a copy for your church.

Susan and I are so blessed by your support. I have been receiving a steady stream of email requests by individuals who are willing to register by mail. Please remember to fill them out and mail them back to Asians for Miracle Marrow Matches as soon as possible. It is amazing to see the reactions and actions taken by people to save Elyse. I will share some of the encouraging emails we have been receiving with you all as soon as I can make time to compile them. Email me at contact@elyseyu.com if you would like to be added to Elyse Team email list for updates with the subject line "Add to Elyse Team."

Please remember the upcoming drives and encourage your friends to participate. We are still waiting on a few churches and organizations so let's all hope for the best. We are slowly penetrating into Korea with the help of Eunice Hur's contact. I hope to hear from them soon with good news. CGNTV will also air Elyse's story in the U.S. and in Korea. I will give you more information as I hear from them. CGNTV has a national viewer base of 2 Million. Wouldn't it be wonderful to even get a response from 1% of the viewers?

Tuesday, June 5, 2007

ABC NEWS

Elyse's story will be airing on ABC NEWS today at 4 pm, 11pm and on the weekend. I hope this story will inspire organizations and individuals to host drives and become registered marrow donors.

Denise Dadore is a kind and wonderful person and I am glad that she is doing the story. Thanks to Asians for Miracle Marrow Match for setting this up and CHLA for allow us to get in at such short notice.

Read the story on ABC7.com

우리 지원이의 이야기가 ABC뉴스에 4시, 11시 그리고 주말에 나온다. 이 뉴스를 보고 각 개인과 여러 단체들이 등록 운동을 벌이고 또 기증자로 등록 할 수 있길 바란다.

디니스 다도레 기자는 너무 친절하고 자상했다. 우리 기사를 다루어 정말 다행이다. 아시안 골수 기증 협회 그리고 나성어린이병원한테 너무 감사하다.

ABC7.com에서 기사를 볼 수 있다.

Sunday, June 3, 2007

Sunday at Home with the Yu Family

Hello Again,

We received some great news about Elyse's first Bone Marrow Drive. 34 New sign-ups, a handful of already registered people updated their information, one church offered to host a bone marrow drive and one mission group also offered to have a drive. It's a great start. Thank you Daniel Ra for getting things together and thank you A3M team. Your dedication amazes me. We told Elyse the numbers, whether she knew what we were talking about or not.

Sundays are a challenge since the girls out number us 3 to 2. The day started like any other day with Susan flushing Elyse's PICC line with heparin (a blood thinner which keeps the line from clotting). It is critical that we keep this line flowing so that nurses can draw blood for labs and administer Chemo without poking Elyse with needles again. Then, Susan moved on to her other morning ritual of preparing Elyse's Decadron (crush the pill, add flavoring, add sweetener, load it in the syringe), Cyclosporine, Nystatin (Thrush), Enalapril(blood pressure med), Bactrim (antibiotic). We have pictures of Elyse taking each one. Guess which one's the Decadron (her doctor told us it tastes like battery acid).

Susan decided to play dress-up with the girls this morning. I guess it helps her to wind down and have some fun during these trying times. We laughed as we saw our girls in dresses (see pictures).

They cried, they ate, they slept and dirtied their diapers. To every action, there is an opposite and equal reaction on our part. So, we comforted, fed, put to sleep and cleaned up their diapers the whole day. Thank you Jerry and Song for the In-N-Out and taking care of the girls. Thanks to Tom and Laura, Susan and I sat down to have dinner together at the same time!!!! You don't know how rare this is when you have triplets. We do everything in shifts.

Elyse is more irritable. I don't know if the effects of the drugs are taking a toll on her body, but that is what Susan and I are thinking. Her blood test results are telling us that the chemo is working, but chemo is not a perfect drug. The side effects are as harsh as the disease itself.

There are times in the day when Elyse cries inconsolably. It might be anything from having diarrhea 4 times a day or nausea from the chemo or the constant feeling of hunger form the decadron. We strap her to her sling and take a walk in our back yard when she gets this way. It seems to do the trick. She calms down right away.

There are more drives planned and a lot more New Willing Donors that we are looking to get on the registry. The more people we have, the better the chances.

New Upcoming drives Added:

June 5
Glendale City College KCCC
4:00 PM to 6:00 PM
Contact: Amy Park (amypark.oh@gmail.com)

June 10
Light of Love Mission Church
2801 E. Colorado Blvd
Pasadena, CA 91107
Time: TBA
Contact: TBA

June 17
New Life Community
Light House Mission Church
846 S Union Ave
Los Angeles, CA 90017
9:00AM - 1:30 PM
Contact: Pastor Chris Lee (213) 389-6256

June 17
OMC
424 N Western Ave
Los Angeles, CA 90004
(323) 466-1234
Time: TBA

Friday, June 1, 2007

Bone Marrow Drives Underway

Elyse has been struggling a lot more today. It is 11:00 PM and she is still awake crying and Susan tries to comfort her while Faith and Erin are fast asleep. We have to give her one last medicine at 12:30 AM and she should be good for tonight.

There has been a tremendous hit count to this website today after both Korea Daily News and Korea Times printed our story. I have had many people asking how they can be a registered donor from Arizona to NY. We are overwhelmed with thankfulness to our close friends who are struggling right along side us and especially grateful to the strangers who are willing to become donors on Elyse's behalf.

Elyse's Bone Marrow Drives so far:

June 2
AKPC Concert Night
1408 S. Euclid St.
Anaheim, CA 92802
4:00 PM ~ 9:00 PM

June 3
KCM Chapel
Though this is for KCM, public can come to the booth and sign-up
Cerritos Mission Church (CMC)
12413 E. 195th St.
Cerritos, CA 90703
7:00 PM ~ 9:00 PM

June 6
UCLA
Ackerman - Room 2412
6:00 PM ~ 8:00 PM
Contact: Eyvette (eyvettemin@gmail.com)
80 committed registrants

June 10
KCCC
Though this is for KCCC, public can come to the booth and sign-up
975 S Berendo St
Los Angeles, CA 90006
6:00 PM ~ 9:00 PM

I just got confirmations from the following churches and waiting for Dates for the drive:
NLC - Thank you Pastor Chris
Light House Mission Church - Thank you Senior Pastor Lee
Hillside Ministry - Thank you pastor David
OMC - Thank you to my Cousin
Siloam Church in Downey - Thanks Bryan and Jennie
LAKMC - Thanks Ruth
Light of Love Church - Thank you Pastor Eddie Song

The list is growing everyday. Thank you.