Monday, July 30, 2007

Blood Drive

Thank you JP and everyone who came to donate blood. If you participated in the blood drive, you already saved a life! That really makes things clear doesn't it? We had over 25 donors this Saturday at CHLA. I saw excited faces as well as a few disappointed people who were not able to donate blood due to weight restrictions. You have to be over 110 pounds to donate. Remember, it's the heart that counts.

We will need a lot more blood and platelets once a donor is found for Elyse. The blood donation staff told me that she would like to line up 3 platelet donors a week and more blood donors once Elyse starts BMT. Collecting platelets takes more time, so please let me or JP know if you are committed to do this. But for now, thank you all.

We are still waiting for news. We will share with you once we get some answers form Cincinnati.

Monday, July 23, 2007

Blood Drive

Elyse has been having diarrhea for the past 6 days and vomited once. She is in good spirits though, so we're not sure what's going on. Pulsing her meds seems to be working and we are hopeful that a BMT match will be found soon. Yes, we are still waiting for Faith & Erin's results.

I wanted to remind everyone about the upcoming blood drive. Please contact our friend JP and let him know if you plan to attend. It seemed a little selfish to ask people for blood and to become a marrow donor only when my daughter needed both. I suppose that is how we all are. We don't stop to do anything beyond our comfort zone unless we are drawn into situations through personal contact. I hope that this experience with Elyse will change something in me and my family to be more compassionate to people around us. Donating marrow and giving blood is a small step, but it is a step in the right direction. I hope giving blood will become a habit for all of us.

Blood Drive Update:
Date Change: July 28th
Time: 12:00 Noon - 2:00 PM
Location: CHLA blood donation room (check in at the front desk).
Contact: JP (youth@nlifec.org)
ElyseYu.com

Wednesday, July 18, 2007

BMT- Counting the cost of Life vs Death

Hello again,

Thank you all for checking the site for news about Elyse. We've been silent for a few days since there was nothing significant to report. Elyse had her chemo yesterday. She loses her appetite when she gets to the hospital and refuses to eat. Dr. Hosftra told us that older patients get sick even before they get to the hospital due to their anticipation and anxiety about receiving chemo that day and thinks that Elyse is expressing the same behavior. It is a surprise to think that a 5 month old can be effected that way, but she definitely is happier on the way home than at the hospital despite all the kind nurses that take care of her.

Still no news from Cincinnati. We've heard some informal news, but we won't say anything till the official results are out. Susan and I had our blood samples sent to Cincinnati yesterday. We are hoping that our results will enlighten us on Elyse's condition. I guess waiting is an inevitable part of the process, so we will wait.

Susan and I had an initial meeting with the Bone Marrow Transplant (BMT) team today. It was both enlightening and discouraging as the BMT doctor laid out all the frightening risks and complications and side effect of the process and medications. Some were fatal, others short term, some that may not even be an issue, and yet others that will impact Elyse's future. If HLH was Mt. Everest that Elyse had to climb, then BMT is the Himalayas jutting up into view right behind it. We saw how resilient Elyse was during her initial treatment, but she will need a lot more to get through the BMT procedure. We will ask for your prayers now in preparation for what is to come.
HLH is a treatable disease and we are grateful to have a second chance at life through a BMT, but our meeting today forced us to count the cost (not monetary) of the transplant on behalf of our daughter. Life vs. Death. The treatment is not perfect and LIFE will come at a cost, leaving an indelible mark on Elyse and in our memories.

Blood Drive Update:
Date Change: July 28th
Time: 12:00 Noon - 2:00 PM
Location: CHLA blood donation room (check in at the front desk).
Contact: JP (youth@nlifec.org)
Please consider donating blood. L.A.'s blood bank is running extremely low and only has reserves to last only one day should a major disaster occur.

ElyseYu.com

Saturday, July 14, 2007

KoreAm Journal Article


The July issue of KoreAm Journal is out. They did a great job with Elyse's article. Thank you to everyone at KoreAm Journal, especially to Michelle & Eric.


ElyseYu.com

Wednesday, July 11, 2007

Continuation Phase

Elyse is now in the “Continuation Phase” of her treatment. Her medications are “pulsed” so that she is getting chemo therapy and decadron every other week, while all other medications stay the same. We pulse her decadron by giving her the original higher dose for only 3 consecutive days (Mon-Wed) and stop for 11 days, then back to the 3 day dose again. Monday, July 9th was her first day of her new treatment schedule of decadron and we definitely see the difference in her general condition and attitude. She is crying most of the time and wants to eat every chance she gets. It reminds us of the first time we started her treatment. She is crying now as I write this entry.

When her decadron dose was decreased, we actually saw the “real” Elyse for the first time since she got sick and possibly since she was born. For the past 3 weeks before we went back to the higher dose of decadron, Elyse’s personality has really been shining through. She’s been smiling more and interacting with Faith and Erin as you might have seen in some of the past photos. We are discovering that Elyse is playful and likes spending time with her sisters. She rubs their head and “eat’s their hand ” (not really, she only has squishy gums)when we lay them down next to each other. We do notice that she is more mature than her sisters. Susan and I think that her calm and “mature” demeanor might have been shaped by the suffering she’s had to endure at such a young age.

We are waiting for final word from the Cincinnati lab concerning Faith & Erin’s results. We are hopeful that they will test negative for HLH. We should get results at least by next week and we will definitely let everyone know as soon as we find out. In the meantime, please help us set up more marrow drives.

Special thanks to Aerin Mun for the Korean translation of our news entries & thanks to the Team Elyse web team.

Blood drive for Elyse on July 21st
Time: Starts 2:00 PM
Organized by: New Life Youth
ElyseYu.com

Tuesday, July 10, 2007

Hello Friends,

Thanks to your efforts, we have been able to set up drives all over the U.S. and there are 1600 new Marrow Donors on the registry just because you all care so much about Elyse. Susan and I thought that we were setting the bar really high when we announced that we will try to get 3,000 new registered marrow donors through Elyse’s Story. As you can see we have reached the half-way mark.

We found out that a file was created for Elyse ever since they started searching for a marrow match and every time a suitable donor is found, that person’s info jumps to the top of her possible donor list, with the best match (10/10) on the top and the next best match down the line in that order. For HLH patients, they will only go as low as a 9/10 match. This is the reason why we are having such a hard time finding a suitable donor. Even a 10/10 non-sibling match will have its challenges and complications. We will write and share the Bone Marrow Transplant (BMT) process information with everyone as soon as we meet with Elyse’s BMT team.

With this said, we still need your help to set up bone marrow drives for Elyse. If you haven’t responded for any reason, I would like to ask for your help now. Please contact anyone you know who is in leadership positions. They need to be willing to encourage the organization and set a time and date for our team to arrive. We also need volunteers at drives, especially outside of L.A. or California since we cannot be there to help. I know I am asking a lot and I wish I had family all over the U.S. and around the world to represent us, but since we don’t I have to ask you for help.

Asians for Miracle Marrow Matches has informed us that 400 forms and kits have been mailed out to date to people requesting mail-in forms. We’ve got back 55 so far. We would appreciate your help in completing the forms and mailing the swabs and forms back to A3M as quickly as possible since we are racing against time right now. Thank you for your cooperation and understanding.

We’ve met some incredible people along this journey to save Elyse. We consider these people our newly formed extended family members who have been holding our hands, calling to comfort us, raising awareness and setting up marrow drive opportunities. They are Elyse’s heroes and we will make sure she knows what they did for her as she lives a full life that they helped to give to her.

Blood drive for Elyse on July 21st
Time: Starts 2:00 PM
Organized by: New Life Youth
ElyseYu.com

Tuesday, July 3, 2007

Milestones

Hello, it's Susan,

After I posted a question on the histio.org website, a responder directed me to www.trevorkott.com. As I was thumbing through his website, my eyes began to well up with tears of sadness, uncertainty and pain. It was heartbreaking to see images of a baby on his deathbed. I wondered if/when we'll find a donor match for Elyse. Photos of Trevor in the hospital reminded me of all the suffering that Elyse has endured thus far. This pains me deep inside. Trevor Kott was diagnosed with AML, a rare form of leukemia, when he was born in October 14, 2006. He lost his battle with leukemia on April 25, 2007. He desperately needed a bone marrow transplant (BMT) but the International Bone Marrow Registry declared that there was no match available for Trevor because of his rare tissue type. I can't help but to wonder if his match could have been the college student who couldn't decide to register so he/she never did, or a co-worker who was fearful of the donating process, or YOU. If Trevor found a match, he will most likely be alive today. I want to see Elyse crawl, stand up on her own, walk, learn to talk, play with her sisters, go to school with her first backpack, go to college, get married, etc. Please help us make these milestones a reality for our family ! Please get tested and become a willing donor.

ElyseYu.com