It's been a pretty hectic several days without our nanny here to help us. She went home on Wednesday with a cold and will return after the new year. I have a new appreciation for our nanny. These past few days, I felt like I was juggling ten different tasks at once every hour of every day. Bless my mom and my sister who came to help this week. After several stressful days, it was nice to round out the week spending time with close friends over dim sum in chinatown today. Thank you guys for the wonderful company.
Looking forward to nanny returning. :)
Saturday, December 29, 2007
Thursday, December 27, 2007
I hope everyone had a wonderful Christmas. Winter is here and this means colds season. Erin caught a cold bug and the first night was rough. She woke up every hour. She lost her appetite for milk so she's been eating mostly solids for the past couple of days. She's regained her appetite today and is feeding better. Tim took her to urgent care because of a slight fever. The doctor simply said that she had a cold and should be better in about 5 days. As I was waiting at home for Erin to return home, I couldn't help but to think back to that Saturday when Tim and I took Elyse to urgent care because her fever wouldn't subside after 5 days. As you can imagine, I was anxiously waiting and hoping to hear from Tim that Erin just has a common cold and nothing more. What a relief when Tim called me !
I hope everyone has a prosperous and healthy 2008.
Posted by Elyse Yu at 10:08 PM
Tuesday, December 25, 2007
We added new pictures today. Also, Rev. Kang sponsored marrow drive is being arranged with Cammy Lee Leukemia Foundation. Please check for information here and tell all of your Houston, Texas contacts about it. There are still more lives to save!
Merry Christmas everyone. Thank you for your prayers.
Posted by Elyse Yu at 12:11 AM
Sunday, December 16, 2007
I hope Inee and Rev. Kang won't mind us sharing this with everyone on Elyse's Blog. We have gained so much strength from reading these that we wanted to share it with all of Elyse's friends.
Dear Tim, Susan, Erin, Faith,
I was introduced to Elyse this past summer and was moved by your bravery and your unwaivering trust in our Lord. I was absolutely shocked to check in today and catch up on the past few months.
I won't pretend to know what it was like these past few months. And I hope you'll find my email encouraging, instead of painful.
Elyse is the bravest person I know. It must be from her family's love and prayer. She's an amazing human being, and I can honestly say I can't wait to meet her. I am so very sorry that she isn't with you physically. I am hurting with you and mourning with you, and I apologize that I am so late on my part. I wish I knew what to say to help with this recovery but everything is sounding a bit clumsy.
I really wanted to take this time to say that everyone in the Yu family are my heros. The strength of your faith has touched me greatly, and helped me to reconnect with our Lord. Your ability to love God, raise your beautiful girls, and not give in to the urge to stand still is amazing. As difficult as these times may be, I hope you find comfort in knowing that God is truly watching over you and you will all be reunited with a healthy, happy Elyse.
I know there are good days, but with those come some bad ones. I hope you continue to find strength in our Lord and feel comforted knowing that strangers have been touched by Elyse's life and we are still praying for your family.
Thank you for sharing your journey, your daughter, your struggles, your joys, your life- it is truly and inspiration and encouragement to me.
Through God's love,
P.S. Erin and Faith are growing up to be such beautiful girls! I hope you continue to keep us updated.
May God's peace continue to work in your lives... truly i was moved, inspired and motivated by the story of your precious Elyse.
would it be possible to have a marrow donor drive in Elyse's name (to add to the wonderful count of 3000?).
it is such an amazing testimony of faith and ultimate hope..
i am pastor of a church here in houston tx. God just led me through various friends on facebook to your story...
peace to you,
Link to Rev. Kang's Church site (http://pathwayshouston.org)
Posted by Elyse Yu at 11:26 PM
Friday, December 14, 2007
(Please Click on the Image to enlarge)
We wanted to share this encouraging card that we received from a 5 year old girl named Jaime and her mom a while back when Elyse was going through Chemo. I hope that it will encourage you all as it did for us. Thank you Jaime!
Posted by Elyse Yu at 10:10 PM
Thursday, December 13, 2007
Wednesday, December 12, 2007
It has been a while since I posted on Elyse's site. Susan has been diligently updating everyone on what we've been doing for the past 2 months while I laid low. Emotions are still up in the air and we are waiting for them to settle to the surface. For now we wonder if they will ever settle. My heart jumped and a rush of emotions surged through me as I visited Elyse's web albums today. I haven't had the strength to open Elyse's Memorial Slide show since her funeral and I don't know when I will be ready to sit and watch it again.
Life goes on whether we want to or not. It is strange yet nice to see people's posts on Facebook and Myspace. Life seems to be moving forward for all of our friends. News of travels, new encounters and relationships are posted on their sites. Our days are still crawling along at a snail's pace as we tip-toe around memories of our dear Elyse hoping to let our emotions settle enough to muster up the courage to revisit happy memories of her.
Difficult events lie ahead and yet looking back we have navigated through rough waters even in the past 2 months. Elyse's memorial plaque will be in place soon and Susan and I will be visiting Rose Hills soon. It will be the first time since the burial service. I am sure it will stir up memories and emotions when we are there. We may ask our friends to join us for support. Our friends have been such a blessing to us.
We have been compartmentalizing our emotions so that we could begin to live a "normal" life. It wouldn't be appropriate to cry in front of strangers while conducting business or while at the check-out line at the grocery store. We are trying to define normal and make sense of what we can each day. We are TRYING HARD to get through all of this by clinging to Jesus. We can't complain to God..that he does not understand what we are going through because he has experienced the same loss to save us all. That is comforting.
Elyse's life was only 8 months long and it brings tears to my eyes and pains me to the core every time I realize how short that time was. I hope that many would benefit through her marrow drives and the sharing of her story through her website.
Blessings and Peace to you all in the name of Our Lord Jesus!
Posted by Elyse Yu at 11:14 PM
Monday, December 10, 2007
Yesterday after church we took Faith and Erin to visit grandma and grandpa. They usually come to our house and stay for a few days to spend quality time with the girls. It was definitely a nice surprise for the grandparents. While Faith and Erin napped (I think Tim was napping also when I got back), I was able to get away to run some errands. Going to the bakery and Rite Aid certainly doesn't qualify as a self-pampering activity but nonetheless it was a nice moment by myself to breathe and relax. I think all moms can relate. Right ladies? When I got back, both girls were awake happy and playing with grandparents. Faith is constantly standing up every chance she gets. She stands for a few seconds and falls and gets right back up again. She's very persistent. I think she'll start walking soon. Erin is extremely limber. I mentioned this to some of my friends....She sleeps doing splits sometimes. I'll have to take pictures of this and upload it to the blog site.
Posted by Elyse Yu at 10:54 PM
Tuesday, December 4, 2007
I finally mustered up the courage to organize all the pictures I ordered from Shutterfly. I've made several attempts in the past month to do this but I always ended up in tears going through Elyse's pictures and had to set them aside until yesterday. I don't know if it will be that much easier if I do it a year from now. So I just took the plunge and organized them and placed them into an album as quickly as I can. Every picture of Elyse I hold in my hand makes me pause and think back to the moment captured in the photo. As I had all the photos spread out on my bedroom floor, Tim came in and looked through them. He mentioned how much he missed her. Every quiet moment that Tim and I have thinking about Elyse just stirs our emotions. At the end of every one of these moments reality bites and we realize again that we will have to go on without her for now until we see her again in heaven. I decided not to incorporate Elyse's BMT photos with the other photos. The images are still just too fresh in my mind and too painful to see. I will have to save these photos in a separate album for safekeeping with Elyse's other belongings. I need to find a box or a nice chest to store Elyse's belongings. If anyone can suggest a store where I can find a pretty box/chest, please let me know.
Posted by Elyse Yu at 4:34 PM
Tuesday, November 27, 2007
Jonah Chuang is almost 4-months-old and he is currently undergoing BMT. His family will be waiting to see how his brother's marrow settles into his body. However, during the bone marrow harvest, the needle was put into Ethan's, Jonah's brother, spinal canal instead of just his pelvic bone. They will have to see the extent of the damage when he wakes up from several days of sedation. Please keep this family in your prayers. To read more, go to www.savejonah.com.
Posted by Elyse Yu at 2:28 PM
Thursday, November 22, 2007
I hope everyone had a memorable Thanksgiving Day. Tim and I had both of our parents over for Thanksgiving along with my brother's family. As much as I wanted to, I didn't have the strength to cook the entire meal from scratch so we catered and spruced up the sides with some creativity. We got rave reviews for the turkey (from Albertsons)! The food was good but the unforgettable highlight of the day was my brother's 2-year-old son, Joseph's rendition of his dad giving sermon on the pulpit (My brother is a pastor). He placed a book on a music stand and with his arms lifted he shouted "Hallelujah!". Everyone stopped what they were doing and couldn't stop laughing. When he realized that all eyes were on him, I think he gained momentum at that point and repeated "hallelujah" dozens of times and chuckled in between each one. He shouted with such conviction. It's really amazing how children make us laugh. They also laugh so unexpectedly. We noticed that when Faith sneezes, Erin laughs and this starts a chain reaction and we find ourselves laughing. We momentarily forget about how much we miss Elyse.
As much as I'd like to simply enjoy the company of my family on days like this, it's hard to get through the day without thinking about Elyse. Sometimes I feel like I'm really in a catch-22. I want to keep her memories alive but as my thoughts turn toward Elyse, that slow searing pain is torturous. Thoughts just randomly crop up.....Elyse would have been home by today or very close to being discharged from the hospital...today would have been day+65 post-BMT...she would have 100% donor cells and full engrafment by now...we would have been so thankful today on Thanksgiving Day to see Elyse well on her way to full recovery.. As I sit here writing this, my heart is heavy. It's a daily struggle. I don't want my mind to wander and think back on what could've been ....would've been. All I can say for now is that I suppose this is all part of mourning for Elyse. It's a process. It's a very difficult process to go through. It's very tough. I ask for your prayers.
Posted by Elyse Yu at 9:17 PM
Wednesday, November 21, 2007
Saturday, November 17, 2007
During this difficult time, it's so easy to just look inward and become fixated on the memories of Elyse and our personal pain. I don't think we really took the time to acknowledge so many of you who offered your love and encouragement and sacrificed your time and energy during this journey.
Here is a very long list of people we owe our thank yous to:
Our parents for tirelessly looking after our girls.
Shannon for making countless trips to California from the east coast to pour out her love and support.
Jennie, Bryan, Christine and David for your constant prayers and support...giving up your Saturdays and Sundays to offer your support.
Sharon for giving up your Saturdays to look after Elyse at the hospital and our girls at home. Thank you also for maintaining Elyse's myspace.
Kyung Sun for spending many days and nights producing Elyse's story for us on such short notice.
Song and Jerry, thank you for the hearty meals. Song, thank you for spending the afternoon with me at the hospital when Elyse was first hospitalized. I really needed a friend to lean on that day.
J.P. for leading the strategy meeting and motivating our friends and contacts to have bone marrow drives wherever they can.
Tom and Laura for offering your support in so many ways. Laura, you offered your swedish masssages when I needed them most. For driving our nanny home for so many weeks. Thank you for always generously making yourselves available.
Susan and Jae for the useful cot. Thanks to you both Tim and I were able to sleep comfortably in Elyse's hospital room. And thank you to Susan for going to the BMT Unit to pick up Elyse's belongings on our behalf. I don't think I'd have the strength to go back there for a long time.
Teresa and Susy for visiting us at the hospital and satisfying our hunger with King Taco. Thank you for listening that day. I guess I had a lot to vent that day.
Thank you Sam and Carolyn for making the trip out to LA just to donate platelets for Elyse when she needed them desperately.
Thank you Daniel Ra for arduously spreading Elyse's story through Facebook and the very first bone marrow drive in Elyse's honor.
Aekyeong for generously offering her time to do the korean translations for the website. I am so fortunate to call you my friend.
Pastor Chris for helping us get through the funeral arragements. You have no idea how much more difficult it would have been if you hadn't stepped in.
Wei, Kathy, Pastor Chris, Ruth and Erick for deligently maintaining the website for us. Thank you so much for your dedication to Elyse's cause.
Peter Ha for helping to edit Elyse's story and putting togethering Elyse's memorial pictures.
Katie in Philadelphia for hosting a bone marrow drive with one of the largest turnout of donors. I'm so glad that you came to visit us and we had a chance to meet you. I hope that we can continue to keep in touch.
Thank you to Steve and Joanne for working so hard to make the bone marrow drive possible at Bethel Church.
Thank you Mary for being a genuine friend.
Thank you Eunice for sharing your big heart. I'm so glad you came to see Elyse. I would have liked Elyse to know you.
Debby and Jeannie for your love and compassion. We just can't thank you enough for even attending Elyse's funeral services.
A3M (Asians for Miracle Marrow Matches) and Cammy Lee Leukemia Foundation for getting Elyse's story out there and promoting bone marrow drives everywhere.
Michelle and Eric at Koream Journal for writing and documenting Elyse's story and also for the memorial article on Elyse.
Day Hospital nurses at CHLA for your constant compassion for Elyse. We thank you for patiently answering all of our questions and taking such good care of Elyse at every lab and chemo appointment.
Thank you Dr. Hofstra (Elyse's Hem/Onc doctor)for your dedication to Elyse. You gave us hope when we needed it.
Carrie and Xander. You are both courageous individuals. We treasure your friendship and we will continue to keep Ethan and Keane in our prayers.
Thank you Courttney (social worker with BMT). You held my hand when I was so broken seeing Elyse suffer. You prayed with me when I could not make sense of anything.
BMT team. They are the most dedicated team of medical professionals I have come across. The doctors' look of concern when Elyse wasn't doing well worried us but also gave us assurance that they really did care about their patients. I couldn't ask for a more professional, knowledgeable and compassionate team of nurses. They did everything they could to make her comfortable during the last few days.
Thank you to everyone who hosted bone marrow drives, registered as donors, donated blood and platelets. I believe your sacrifice will not go unnoticed.
Thank you to all who came to Elyse's memorial services to remember Elyse's short but full life. Thank you to those who could not attend and was with us in spirit.
Thank you to all who prayed earnestly and continue to pray for Elyse and our family.
We still receive a steady stream of condolences through email and by mail. We thank you from the bottom of our hearts. Every comment on the blogsite, every card, every email, every gesture of support....comforts us during this very difficult time. We feel so privileged to have been Elyse's parents.
Posted by Elyse Yu at 12:06 PM
Tuesday, November 13, 2007
I received a call from a nurse at the fertility center I frequented for countless ultrasounds, blood draws and ultimately for IVF procedures which led to the conception of our triplets. She was just making a routine call to ask about my pregnancy, delivery and health of our triplets. My heart sank as I was once again reminded of our painful reality. I had to reiterate that Elyse is no longer with us. I realized that it is very painful to accept this fact. I wished that I was able to tell the nurse that all three of our girls were in perfect health when they were born and still doing exceptionally well. When I told the nurse about Elyse, she paused for a moment and expressed her condolences. She politely wished us well. After I put the phone down, I was in tears once again. Sometimes I just let it flow. Nothing can stop it. It felt like my heart had broken into a thousand pieces to remember that I carried her for nine months and gave birth to her and had so little time with her...that our memories of Elyse had to stop here.
It has been a little over a month since Elyse went to heaven and I don't know when my fond memories of Elyse will bring a smile to my face. I suppose I just have to give it time.
Posted by Elyse Yu at 3:09 PM
Sunday, November 11, 2007
We truly are so blessed to have friends who pray for us. We recently received this letter from Frank Choi, a member of Hillsongs Australia. We believe that he was inspired to write these words that touched us and moved us to tears. We wanted to share it with you all.
October 12, 2007
Dear Tim & Susan
This is Frank from Sydney. I've waited a few days to write this letter after hearing the news of Elyse. I was in shock & lost for words to be totally honest. I prayed & even was upset at God that He allowed it to unfold this way. I really wanted an answer & a reason why it had to be this way.
I really am in mourning with you. I know nothing can really be said to bring comfort to you both. But I want you to know that together with all your family & loved ones you will make it through this difficult time. I know that no one really understands the pain & loss you feel right now. But know that Jesus feels your pain and understands.
I realise during this difficult time you may question God & even be angry, but know that its ok to feel this way & healthy to express it to God who knows & understands what you're going through right now.
I was driving today on the motorway & praying to God why it had to be this way. Asking God what can I say to Elyse's parents to comfort them. At the same time I was also wanting answers. I believe God answered me.
And His answer to me was this "I know its difficult for you to understand. I understand it came as a shock to you but it wasn't a shock to me."
I believe that God was trying to explain to me it's never pleasant to lose a loved one especially at a young age when it seems like they had so much to live for. But we all go to be with the Lord & its never easy for the people who loved then who remain. But I believe God wants us to know that his was Elyse's race as short as it was it was powerful & it wasn't a wasted life.
Through Elyse living the life she did we all know how many lives she will save into the future through the BM donors.
I know right now all we feel is the pain & loss. but I know in due time we will all come to understand why it had to be this way. I pray that you will take comfort in knowing that Elyse is in God's presence right now & one day you will meet her again in the near future. I know God uses all things for good & even what seems like a loss in our present moment will one day be turned into joy.
Tim & Susan I know this, that if Elyse could talk to you both right now she would say "Mummy Daddy I'm so happy right now, I know you miss me but don't worry I'm really really happy right now & I'm going to be our families No. 1 cheerleader in heaven. Your the best mummy & daddy a daughter could wish for. Don't cry mummy & daddy everthing will be okay. I'll be watching over you everyday & every moment. And take care of my beautiful sisters Erin & Faith! I love you all very much & I'm not gone I'm here in heaven with Jesus and I can't wait to see you in person soon. Love you muah muah!"
I really believe thats what Elyse would say. She's probably beaming from ear to ear in excitement to prepare to meet you all soon.
I'm having a lot of mixed emotions about this letter. I'm hoping it comforts you. I'll continue to pray that the peace of God surrounds your heart and minds in Christ Jesus.
Tim & Susan I have to say your strength & courage has really amazed me. God really knew what he was doing when He chose parents for Faith, Elyse & Erin. I praythat with that same strength love and courage you will both shine in this life as amazing parents & spiritual mentors for us. I'm honored to have met you even if its only online. I will come visit one day & I can give you both a big bear hug.
Love from your brother from another mother
Please forgive me for the paper quality I just had to write it now !
Posted by Elyse Yu at 6:41 PM
Saturday, November 3, 2007
We attended the Harvest Festival at Grace Baptist Church in Santa Clarita on October 31st. Though Faith and Erin are still too young to know where and why we were there, it was good to get out with friends for a little while. We took some pictures, which we are sharing with you all. As you can see in the picures, Faith and Erin were dressed in angel costumes. We would have liked to see Elyse in an angel costume along with Faith and Erin. Again, we remind ourselves that she is in heaven and safe in the arms of God. She must be wearing the most beautiful heavenly gown that is beyond description.
We keep running into the same dilemma when we take the girls out. People come up to us and ask, "Oh, are they twins?" We don't want to deal with talking about what happened, so we say that they are. Well, until I can't contain myself anymore and I end up explaining what happened with Elyse. The atmosphere and mood of the conversation changes immediately and the person we just met is lost for words. Though we would rather not disclose what we have been through with Elyse for the past 8 months, my conscience will not allow me to forget and dishonor our daughter by not speaking about her. I even thought about printing a T-shirt that says "No, they are not twins...they are triplets. Two are with us and one went to heaven before us." This may not be the best solution. Please give us some wise counsel.
The books are a good source of comfort for us. I would suggest you all to read at least one of the books mentioned, especially if you are in a leadership position. It will give you a good idea of what the grieving family is going through and some wise words of comfort for them when they are ready to hear them.
Posted by Elyse Yu at 9:11 PM
Wednesday, October 31, 2007
Though we would like to drop anchor and stay planted to the date that Elyse went to Heaven, we know that life moves on. I think that the Lord made the sun to set and rise each day without fail to help us move beyond our mistakes, accomplishments and grief.
There isn't a moment that we don't think of Elyse, but we are trying to work through it so that our lives are not paralyzed by it. The hope we have in Christ picks us up and gently pushes us forward. The truth we have in Christ that we have life after death in heaven with a loving creator is a great comfort.
I hope you all enjoy the new photos of Faith and Erin. They are growing up so fast that it seems that time might just pass us by if we don't make time to notice the wonderful people in our lives. Susan wrote about our beach trip in a previous post and so we included pictures of that day. We had many thoughts of Elyse as we stared out into the crashing waves. We hoped to go to the beach all together when Elyse got better, but we will have to wait a little while till we can fulfill that dream. This is a reminder to everyone reading this post that we don't know what tomorrow holds. So please live each day to the fullest, without regrets, loving each other instead of fighting over petty issues. I hope you can see your prayers bearing fruit to see us still smiling and enjoying life with Faith and Erin.
The new pictures are in the side bar. Your comments are always nice to see on Elyse's blog. Thank you all. We will leave you for now with the words of this Hymn by Karolina W. SandellBerg, 1865
Strength I find, to meet my trials here;
Trusting in my Father’s wise bestowment,
I’ve no cause for worry or for fear.
He Whose heart is kind beyond all measure
Gives unto each day what He deems best—
Lovingly, its part of pain and pleasure,
Mingling toil with peace and rest.
Every day, the Lord Himself is near me
With a special mercy for each hour;
All my cares He fain would bear, and cheer me,
He Whose Name is Counselor and Power;
The protection of His child and treasure
Is a charge that on Himself He laid;
“As thy days, thy strength shall be in measure,”
This the pledge to me He made.
Help me then in every tribulation
So to trust Thy promises, O Lord,
That I lose not faith’s sweet consolation
Offered me within Thy holy Word.
Help me, Lord, when toil and trouble meeting,
Ever to take, as from a father’s hand,
One by one, the days, the moments fleeting,
Till I reach the promised land.
Posted by Elyse Yu at 10:29 PM
Tuesday, October 30, 2007
Our friend Peter Ha made this slide show for us to show during Elyse's funeral. We wanted to share it with everyone who did not get a chance to see it. Thank you for being part of Elyse's life and I hope that everyone visiting this site will come to know the saving grace of our Lord Jesus Christ. All you need to do is to ask Him into your heart. Then, we can all see Elyse in heaven when we are called home.
We will have the slide show up on the right control bar also.
Posted by Elyse Yu at 8:20 PM
Monday, October 29, 2007
Susan organized the girls' dresser over the weekend. As I stepped in on her a few times, I saw that she was organizing more than clothes that day, she was organizing her memories of Elyse. To my surprise Susan remembered every occasion Elyse had worn a certain onesie, skirt, bib or shirt. I realized that the love of a mother for a child holds a special bond that fathers may never understand. I appreciate my wife so much for her bravery and character.
The reality of the loss of a loved one sinks in more with the passing of time. That's how it is for me and Susan. That loss is so apparent in the absence of care for that person in the daily routines. The number of bottles have been reduced, we don't buy baby clothes in 3's, there is one less car seat and only two high chairs at feeding time.
We started to read the books that we mentioned on the last post. Through our reading, we have realized that Elyse's time was set before she was born (Psalm 139:16), that the righteous are taken to be spared from evil (Isaiah 57:1-2)and that heaven truly is a wonderful place. It is our selfishness that desires her back with us. We are accepting these facts slowly and hope that our grieving will lead us to a higher understanding of God and his desire to save the lost souls of this world.
Faith and Erin are a delight. They are healthy and full of energy as they tackle each day. Faith has learned to sit up on her own and pulls her self up to her knees while holding the top rail of her crib. Erin is learning new ways of making sounds with her mouth and does not want to lose to her sister on any level. It is fun to watch them interacting with each other. We can really see there personalities emerging.
Posted by Elyse Yu at 11:53 PM
Thursday, October 25, 2007
We attended the 'Histio Walk' last Sunday and spoke with people that we read about in the forums and blogs. Elyse's name was printed on the T-shirt along with many other children who passed away from Histiosytosis disease. One word...it was sad. We made a donation on behalf of Elyse and we left with the desire to keep others from experiencing the loss that we feel.
The past few weeks have been more difficult as the initial shock of our loss is wearing down and the reality of our loss is starting to sink in. Susan and I've been trying to deal with our grief and find answers to the many questions that we have. We've found countless websites (Christian) about how we are to grieve...and they were all helpful to a certain degree. Though our mind understands, we need our heart to work out what we are going through. Susan and I try to find time to sit and talk about our anger, regrets and thoughts in between life's duties and end up praying for strength to move forward.
We wanted to learn more and find comfort in what we are going through, so we decided to order a few books online. Here are the titles of the books with links in case you wanted to read excerpts: Confessions of a Grieving Christian, Within Heaven's Gates, Safe in the Arms of God: Words from Heaven About the Death of a Child, and Gone but Not Lost: Grieving the Death of a Child. Susan and I decided to read all the books together to try to help us cope, accept and move forward.
The emptiness and pain of having Elyse go home ahead of us erupts violently at times. We are thankful to know that there are still so many friends (old and new) praying for our family.
Posted by Elyse Yu at 10:23 PM
Saturday, October 20, 2007
Susan and I will be attending the 7th Annual SoCal Histio Walk on October 21st (This Sunday) from 12 - 5 P.M in Burbank, CA. This walk is sponsored by the Histiocytosis Association of America and the parents and families of patients. If you would like to participate or make a donation to help raise funds for research of Histiocytosis diseases like LCH & HLH, please follow this link or email us (email@example.com).
HLH is called an orphan disease meaning it is generally considered to have a prevalence of fewer than 200,000 affected individuals in the United States and does not qualify for government funding for research.
It is too sad for us to think that other families are and will lose their loved ones to HLH. We didn't sit and wait while Elyse was looking for a bone marrow match and we cannot be still while other families lose their precious loved ones. We ask that you do what you can to get involved so that we can hear more survival stories in the future. I think Elyse would be proud of us all if we helped others to survive.
Posted by Elyse Yu at 11:18 AM
Friday, October 19, 2007
It was a very warm day today so we decided to take Faith and Erin to see the ocean for the very first time. There is a very clean and quiet beach called Mandalay Beach in Oxnard. We discovered this beach with some friends while we were at the annual Strawberry Festival in Oxnard. Californians, if you have never been there, it's definitely worth the drive. As soon as both Faith and Erin laid eyes on the ocean waves, they were beaming with fascination. We took lots of great pictures hoping to continue building memories with our two girls. I couldn't help but to wonder what Elyse's expression would have been like if she was here with us looking at the waves. I was so happy to spend time with Faith and Erin and yet my thoughts always turned towards Elyse. I miss her terribly. I miss holding her in my arms. I miss seeing her laugh and smile. Spending time with Faith and Erin gives me hope and strength to move forward but they are also constant reminders of their sister Elyse who is not with us anymore. Before my thoughts just simply spiral to complete sorrow, I try to remind myself that she is in heaven witnessing the most beautiful things of God. This gives me some measure of peace for now. Tim and I are taking one moment at a time as painful as it is sometimes. I do believe that experiencing pain is part of the healing process. We seek God's love and comfort during this very difficult time.
Posted by Elyse Yu at 7:40 PM
Thursday, October 18, 2007
I gathered up the energy and courage to remove one of the car seats from our mini-van today. I will not go into details about what that did to me. We get so attached to objects that symbolize our connection to those close to us. I stared at the car seat for a while as my mind raced with memories of Elyse before wrapping it up and putting it aside. Almost 2 weeks since Elyse's passing and it seems even more unbelievable now than it did on the day she passed.
There are reminders of our loss everywhere we go. Susan and I decided to print all of the pictures from Shutterfly and Picasa and have them in a photo album. We had them printed out at Target near our house and decided to get some diapers while we were there. The cashier saw the 3 mega-packs of diapers and asked us if we had twins. That hit us hard! Susan just said yes just so that we wouldn't have to discuss our story. The cashier added how twins were so common these days and how she sees 3 triplet families coming in once in a while. Bam! again right in our sour spot. If you are a parent of triplets you might understand what I'm trying to say about the whole "twin -triplet" comment. I just can't seem to put it into words....
Faith and Erin are such blessings to us. Susan and I wouldn't know how to handle everything without them. They are giving us more joy and love than what we can give to them at this time, and all they ask in return from us is recognition, hugs and kisses. They are developing incredibly well. Faith frustrated since she can only crawl backwards and Erin is, well just wanting to get as much attention from us by doing her cute "da-da-das." We will be sure to post some pictures over the weekend.
Sorry about jumping all over the place with this post. Till next time, we pray that you will all be well.
Posted by Elyse Yu at 11:02 PM
Sunday, October 14, 2007
It has been 8 days since Elyse's passing and 3 days since the funeral. I cannot even begin to tell you how hard it is to live without Elyse in our lives. Time might heal this wound, but for now we are trying to get by one hour at a time.
Susan and I took the girls to church today. We knew that it was time to try and move forward, though they may be baby steps. We also took some pictures of Faith and Erin today and while reviewing the pictures in the camera we came across some of Elyse taken just a week before she passed. Needless to say, the images got the better of our emotions.
We know that she is in a better place, but a parent's heart always wants their children with them. We miss her.
We thank you for your comments and prayers. Please continue to pray for us. We will need it.
Posted by Elyse Yu at 6:48 PM
Thursday, October 11, 2007
We had Elyse's Memorial Service today. Though Susan and I know that our precious daughter is in the Lord's arms, our tears would not stop. Our pastor said that tears are the words of our spirit today and I guess we had no words to speak with our mouth so we let our spirit speak for us.
I don't know how long it will take to recover from this loss, but we know that the world keeps turning and life will not slow down and wait for us. We find strength in our God, friends both old and new and in the hope that we will see Elyse again when we are called to be with God.
Thank you all for attending the service and sharing Elyse's life with us.Susan and I will keep the love we have for Elyse and raise Faith and Erin to be loving and purposeful human beings.
With much love and gratitude,
Tim, Susan, Elyse, Faith & Erin
Posted by Elyse Yu at 10:11 PM
Monday, October 8, 2007
To Our friends and those who shared in our love for Elyse,
Thank you all for your support and prayers. Words cannot express our gratitude for the strength you all have given to us. Our love for Elyse filled such a huge part of our hearts that the void that she left is difficult to bear at times. We grieve her passing at such a young age, but we know that she is smiling and playing in Jesus' presence at this time. We miss her dearly as I know all of you do.
Your presence at her memorial service will be greatly appreciated and welcomed.
The memorial service will be held at:
Han Kook Mortuary
2045 W. Washington Blvd
Los Angeles, CA 90018
Date: Thursday, October 11, 2007
Time: 10:00 AM
Burial Service will follow at Rose Hills Memorial Park (Click Here for Directions)
Approx. Time: 11:30 AM
If you are planning to attend the burial service only, please ask the front gate attendent for details.
Lunch will be provided after the burial service at Secret Garden. Please RSVP to firstname.lastname@example.org by Tuesday 10AM.
1925 W. Olympic Blvd.
Los Angeles, CA 90006
We hope to remember Elyse's short, but full life with you all on Thursday.
Posted by Elyse Yu at 8:38 AM
Saturday, October 6, 2007
Elyse went to be with the Lord this morning at 3 AM in the BMT ward at CHLA. Though our grief is great, we look forward to the hope that we will see her again in heaven.
Thank you for all your prayers and support through out our Journey. We will be posting funeral information for those of you who would like to attend.
It will be in the coming week.
In Loving memory,
Posted by Elyse Yu at 11:21 AM
Friday, October 5, 2007
It has been a long week for all of us. Elyse's bilirubin number has gone down by 0.1. It's not a drastic improvement, but at least it has not gone up. Praise God! She is extremely irritated right now and still flails her arms and tries to pull out all and any tubes she can reach...and she has a lot of tubes everywhere.
They are still draining her fluids through peritoneal dialysis and getting results. Her arms, face and chest area are almost back to normal. Legs, hands and stomach are still bloated. We are still hopeful that all of her organs will function well.
We are considering a Plan B at this time. Elyse's BMT doctor told us about a possibility of a liver transplant if things get worse. A liver transplant doctor came today and told us that though liver transplant survival rate is 100% in normal liver transplant patients, HLH BMT patients have a survival rate of 15%. Like I said, it's Plan B and we would not decide on anything until we talk more. There are a few conditions to getting the liver transplant...the engraftment has to be 100% where HLH is completely gone from the system and they would want to make sure that they could do something to bring up the 15% success rate. We will be talking more throughout the day with both BMT doctor and the transplant doctor. If we decide to do the transplant and she survives, Elyse will have to take medications for the rest of her life.
Thank you for your prayers and being here with us.
Posted by Elyse Yu at 1:36 PM
Thursday, October 4, 2007
It is 9:57 PM right now and Susan just calmed Elyse down a bit after about an hour of struggle. Elyse was uncomfortable throughout the day today and in pain. The pain came intermittently making Elyse flail her arms and cry out. We can only imagine what she is feeling. Susan is sitting on the mat praying while I type this update. All we know now is that she is still fighting.
Elyse's bilirubin number has gone up again today. Nurses are pulling out about 60 - 90 cc's additional liquid through the peritoneal dialysis every hour and we can see her belly softening and the swelling in her arms going down a bit. Susan and I hope to see her kidneys functioning on their own and platelet levels staying at good levels so that her fluid balance will go back to normal.
I forgot to mention on Day +15 post that Elyse opened her eyes 3 times and looked around. It was nice to see her open her eyes without struggling in pain for once. We are still hoping to hear that her numbers have gone down tomorrow. Elyse is crying again and we've asked for another bolus of pain med. We will post again tomorrow.
Posted by Elyse Yu at 9:42 PM
Wednesday, October 3, 2007
So far I have been reporting only the facts and numbers; the things that we can see with our eyes. What we see with our eyes can really get us down. But, I believe that God is here with us closely monitoring everything that is happening and in full control. I will not lie and say that I am not shaken or that circumstances have not phased me. But going beyond what we can see, we choose to believe that Elyse will get well. For the Lord says, "The things which are impossible with men are possible with God." (Luke 18:27).
I remind myself that God is good and desires to heal Elyse.
Praise the Lord, O my soul, and forget not all his benefits-- who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's. Psalms 103:2-5
Jesus' will is to heal us all.
"But when Jesus knew it, He withdrew from there; and great multitudes followed Him, and He healed them all." (Matthew 12:15)
God uses prayer to heal...and we have so many believers praying for Elyse.
"Is anyone among you sick? Let him call for the elders of the Church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven." (James 5:14)
We need to have faith that God will heal Elyse.
"For whatever is born of God overcomes the world. And this is the victory that has overcome the world - our faith." (1 John 5:4)
I wrote this to remind me and my family of God's perspective. Thank you for reading and sharing in our journey.
Posted by Elyse Yu at 6:28 PM
Elyse's bilirubin number went up again today, which is not a good sign for her liver. Her marrow is engrafted but we are praying and hoping that her liver will recover. There are some good signs too. Her platelet counts are holding steady and other labs numbers on her liver are better. However, her doctor told me that the bilirubin count is the main indicator of how her liver is doing.
Elyse's BMT doctor told me today that she could start to turn a corner any moment, but there is an equal chance for us to lose her at any moment. He wanted to make sure that we knew the reality of her situation and be prepared for any outcome. I was extremely calm hearing this news mainly because I still have great hope that she will recover. It may also be that I have refused to believe that she will stop fighting and that God is still in control.
Many people have emailed us about Defribrotide to treat VOD. Elyse's doctors ruled this out a long time ago due to Elyse's mucositis (bleeding) from chemo and the bleeding side effect that Defribrotide can cause. It is better to see how she does on her own for now.
We only have trust in God, your prayers and Elyse's fighting spirit to get us through this situation. I will keep posting daily.
Posted by Elyse Yu at 10:59 AM
Tuesday, October 2, 2007
Elyse started to get swollen overnight so they've started her Peritoneal Dialysis again this morning to relieve the kidneys every 2 hours. To learn more about Peritoneal Dialysis please go to this link; http://en.wikipedia.org/wiki/Peritoneal_dialysis
Elyse's counts are up (WBC = 5,000), which means that her graft is taking well, but her liver is still in bad shape. Elyse's BMT doctor told us that her liver is still very critical and she is at a point where the liver could go either way. They are doing their best to give her liver the best chance to recoverf by removing fluids and relieving her kidneys as much as possible to help the liver through the preitoneal dialysis.
We are checking bilirubin numbers to see how her liver is doing. We need her numbers to go down, but it has been steadily going up till now. She is still struggling to breath as I update this post. Her platelet levels have been steadily going down as well, so more platelets and blood are being given right now. Thank you all for donating your blood and platelets. We need more donors, so please contact George to make an appointment (323) 361-2370.
I cannot express how difficult it is to see her like this. We are staying strong for her and we are hoping and praying that her liver will get better soon.
Posted by Elyse Yu at 12:12 PM
Monday, October 1, 2007
A lot has happened since Day +9. Day +10 thru Day +12 have been scary. Elyse has been having difficulty breathing per our past posts, but she reached the pinnacle and almost stopped breathing on Day +10. I was donating platelets when Susan called the blood donor center to tell me that Elyse is not breathing normally. I ran up to find Elyse gasping for air with nurses and doctors huddled around her. The pressure in her stomach, liver, spleen and surrounding tissues built up so much that it was pressing up against her lungs. She was desperately struggling to take each breath. Two things were done to alleviate the pressure. A catheter was put in to relieve her bladder and a specialist was brought up to drain her stomach of fluids that leaked out into her tissues.
250cc was taken from her stomach. Elyse's BMT doctor told me that there is more in there, but we had to keep a balance of fluids in her body so only 250cc was taken. Her breathing eased just a bit and she has not really woken up since then. Her heart rate was racing at 200+ beats and her respiratory rate was at 75 from that point on till 4:00 AM on Day +11. This rate is equivalent to you and me running. Elyse was at this rate for about 24 hours just trying to breathe. She had her eyes closed, both hands clenched and raised to her cheeks. She was fighting to breathe with all of her strength and might. Each breath came with a gulp of air and a groan, it brought us to tears to see our daughter fight so hard. Doctors told us that we would have to see how long she could keep this up before she gets too tired to breathe.
The PICU resident came up a few times to check up on her in case we needed to put her on a respirator and suggested we take her down there if a room was available. They took her down to the PICU at 3:30 AM on Day 11 and started dialysis to remove fluids. She became stable over the weekend and Elyse was brought back to the BMT ward today (Day +13). Elyse's numbers came down from HR 200 to 150 and the Resp rate from 75 to 40. She is still struggling to breathe, but at least she is still breathing.
It was intense for all of us. Susan and I mentally made funeral arrangements for her over the weekend in case she didn't pull through. But prayer of friends and family really pulled us through. Thank you for fasting and praying. We are hoping for good results.
Posted by Elyse Yu at 4:31 PM
Thursday, September 27, 2007
Elyse's abdomen is still distended. There is no change in her condition. I could see that she is having a difficult time taking each breath. We will not be posting for a while. Elyse's doctors are telling us that she is in a dangerous stage of VOD. The next post will either be the very best news or the worst. Please be in prayer. Thank you for your support.
Posted by Elyse Yu at 9:35 AM
We were told by Elyse's BMT doctor today that this is the most critical portion of the post BMT process and we can see why. Elyse is in a lot of pain and discomfort from fluid retention do to a case of Veno-Occlusive Disease. It started out as a mild case, but now her belly is really distended and she is having difficulty breathing. It must be difficult for her to go through and very difficult to watch her in so much pain. There is a chance of death due to liver and multiple organ damage and if water gets into the lungs.
Please pray for her recovery and donate platelets if you are willing.
For I will restore health unto thee, and I will heal thee...saith the Lord.
Posted by Elyse Yu at 12:53 AM
Wednesday, September 26, 2007
We are seeing the worst of the BMT process to date. Elyse has lost 50% of her hair now and she is grunting in pain with every breath. We are moved to tears once more seeing her in so much pain. There are a few things going on right now. Her liver is eating up the platelets so her counts are low and causing the small blood vessels right below her skin to explode, which is causing small purple spots to appear all over her body.
She also has signs of Venoclusive disease (VOD) causes the veins in and going to the liver to become narrow. This usually occurs 15 to 25 days after a child receives the transplant. Noticeable signs of VOD are weight gain and enlarging of the abdomen. While there is no special treatment for VOD, all children will receive Heparin before and during the bone marrow transplant to help prevent VOD. That's why her belly is bloated and we had to go up on her diaper size.
We are in desperate need of platelets(AB) and blood, especially if you are CMV negative. If you don't know if you are CMV Negative, the only way to find out is to give first and let the labs tell you. We cannot give her platelets right away when she needs it right now because CHLA blood bank does not have platelets to give her and have to wait for Red Cross to deliver some to us. Please contact George at CHLA to schedule a donation. (323) 361-2370 email@example.com.
1) Her liver will not eat up the platelets (VOD)
2) Bloating will go down
3) Blood counts will go up
4) platelet donors will come in and donate
Thank you. I will update pictures tonight.
Posted by Elyse Yu at 9:42 AM
Tuesday, September 25, 2007
Thank you again to everyone who has donated blood and platelets. She got blood, platelets and plasma today. We are just so blessed to have blood and platelet donors. Elyse's nurse yesterday mentioned that sometimes platelets can be hard to come by. So sometimes there is a 24-hour wait while CHLA requests platelets from the Red Cross.
Elyse had a difficult day today. Her mucositis is worse and she is spitting up old and fresh blood along with thick saliva. She doesn't know how to spit out her saliva so she swallows it. The saliva and blood that she swallows makes her nauseous and she eventually vomits. When she sleeps she sounds very congested from her thick saliva. She is getting an increased dose of morphine to keep her comfortable but she's now very itchy from the increased morphine. She was given some benadryl to help with the itchiness. She's been very sleepy most of the day because of all the sedatives she's getting. Being sedated so much, her oxygen level wasn't where it should be. So the nurses set up the oxygen mask for Elyse. Seeing Elyse with an oxygen mask was difficult. I just could not get myself to leave. She seemed so helpless and there was nothing I can do to lessen her pain and suffering. So while I'm here I I'm updating her blog. It's now 9pm and I think I should leave now if I'm going to come back tomorrow rested. She'll be getting another infusion of blood and platelets tonight because her blood levels are low. She has a condition right now (doctors said it's to be expected at this point) in which her liver eats up a lot of her platelets. So one infusion of platelets was not enough today. She's also retaining fluid so she gets meds to flush out fluids from her body. Well, enough said for now. I ask for your prayers.
Posted by Elyse Yu at 7:20 PM
Saturday, September 22, 2007
Before I report on Elyse's condition, I would like to thank everyone for donating blood and platelets. Some donors were reported to be CMV positive so the hospital could not use blood and platelets donated by those people for Elyse. If you are CMV positive, don't worry, it's nothing serious. You can do research on the internet to find out what that is. I went down to the blood donor center this morning to meet with George and he told me that he's gotten good response for Elyse. We are so fortunate to have so much support from friends and family. We thank you and ask for your continued blood / platelet donations as well as your prayers.
There are a few things to be thankful for today. I heard Elyse giggle for the first time in many weeks. Isn't it funny how your child's giggles could bring so much joy and hope? Susan and I were comforted to know that she is not in pain all the time. Oh, the morphine drip also helps to keep pain at under control. The other thing is that she had 1.5 Oz of formula today after fasting for about 1 week. I knew she was hungry because she started sucking on her finger and the back of her hand, so I tried to feed her a bottle of formula. She put it in her mouth and would stop sucking after trying once. I pulled the bottle out and found blood on the nipple. I implimented 'Plan B' and gave her the formula through an oral syringe. Elyse would not take it at first thinking that it was medicine, but quickly took the formula willingly after realizing what it was. Thank God for small victories.
Her counts blood counts are down. White blood cells are less than 0.1, Platelets have dropped down to 23K. She was given blood, platelets and plasma donated by our friends. She finally fell asleep listening to her favorite Christian lullaby CD. I will be at the hospital all day tomorrow. I am looking forward to it.
Erin, our little hero is still pale from her marrow donation. She is eating well, but it will take another week to replenish her marrow supply. Faith is happy and doing well also. God Bless you all till our next post.
Posted by Elyse Yu at 8:20 PM
Friday, September 21, 2007
Hello everyone. Elyse is sleeping now so this gives me a chance to update her blog. I can hear her snoring more because her saliva is thicker due to her mucositis. Her mucositis is getting worse. She is starting to cough up blood because of the sores in her esophagus. This is to be expected at this point. She's on a continuous morphine drip to keep her comfortable. Before she's given medication, she gets a shot of morphine in her IV to help her swallow her meds. She still cries a lot when she's given her meds. I don't think the morphine numbs her pain all that much. The mouth sores should start to heal once her counts start to go up. Right now her platelet count is decreasing fast. This is to be expected as well. On Day 0 it was at 180,000...on Day +1 it was 118,000 and on Day +2 it plummeted to 44,000. Tomorrow her count will probably drop down to about 20,000. So she'll start to receive platelet infusions tomorrow. I want to thank everyone who will be donating your platelets.
I realize that I need to pace myself if I'm going to continue taking care of Elyse. Everyday before I step inside Elyse's isolation room, I scrub my hands and arms for 3 minutes, put on a gown, mask, gloves, cap and shoe covers. I have to make sure that I'm well hydrated and step out once in a while. I ask for your continued prayers for Elyse's recovery and our family's health.
Posted by Elyse Yu at 2:27 PM
Tuesday, September 18, 2007
Today was a day of mixed emotions. We starved Erin in preparation for her bone marrow aspiration with hopes that they would take her in as soon as we got there. That is exactly what happened to our surprise. Erin might not have known what she was there to do, but we were so proud of her none the less. We were with her through pre-Op, gave her a kiss and saw her vanish behind the double doors of the operating room. We were sad knowing that she might have some discomfort afterwards, but so glad that Erin was a match. The procedure was over in 40 minutes.
Erin was asleep and paler than usual after the marrow aspiratin. The doctor told us that this is to be expected since she gave 1/5 of her blood/marrow supply today. She slept most of the day and took in 5 ounces of formula at 8:30 pm. She is recovering nicely.
The marrow came up to Elyse's room at around 2:15 PM. Elyse was ready to receive the marrow by 3:00 PM. It would be a 4 hours process with a relentless 5 minute interval monitoring of her vitals and temperature for the first hour then every 30 minutes there after. Susan and I couldn't believe that it was finally time for the transplant. Outsiders would have thought that the bone marrow transplant itself was anticlimactic. They hung the marrow up and opened the tube and the marrow flowed in. But, to us it was an emotional accomplishment of the efforts of countless friends and family members for the past 4 months. Susan started to cry as the nurse opened the IV line and as Erin's marrow slowly traveled through the IV line towards Elyse's heart. She didn't have to tell me what she was thinking since the same thoughts raced through me. It was a time of refection of everything we had gone through from the discovery of HLH, the many visits to the hospital, the many marrow drives, the intense focus we tried to maintain throughout the 4 months, the fear that Elyse would not make it this far and especially the suffering our Elyse had to endure.
The Lord has been good to us. He has given us prayer partners who have made a huge difference in this situation. Thing could have been much worse, but your prayers have helped shape events to our favor. There are still many critical benchmarks that we have to overcome after the BMT. Elyse is showing signs of mucositis (mouth sores from chemo)and refused to eat since for 4 days now. She has been groaning quietly almost all day and is weak from lack of milk. There are other things to be mindful of like GVHD and organ failure. So, we will ask for your continued prayers and donation of blood and platelets.
I taped most of what happened today and hope to get a streaming video on Elyse's website soon. Thank you all for your support. We couldn't have come this far without you all.
Praise God for his goodness.
Posted by Elyse Yu at 10:29 PM
Monday, September 17, 2007
This day if finally here. We can't believe that she will be getting her transplant tomorrow. With your prayers and the grace of God we were able to get to this point without a tremendous amount of hardship. Nurses at CHLA consider day 0 as a second birthday...a new chance at life. We are both scared and excited to see this day.
We brought Erin to the hospital today for her final blood test and physical. Erin had a hard time during her blood draw. They could not find her vein so they poked her 7 times before finding her vein. Seeing Erin suffer almost brought Susan to tears. We hope that technology will improve enough in the future to a point where finding a vein will not be left to guess work.
Elyse has been in pain the whole day today. She's been groaning and lethargic. It breaks us to see our daughter in so much pain. She is on morphine drip now and they just increased the dose at our request. They take pain management seriously here and asked us not to withhold pain meds. Elyse is looking at me as I type this entry. She grunts and moans in Susan's arms as she stairs at the bright screen. It has been 3 days since she's eaten so they will start TPN (Nutrition supplement) tonight.
Erin is scheduled to give marrow tomorrow at noon (schedule might change). CHLA is doing us a huge favor by giving Erin a room in the BMT ward after they take her marrow tomorrow. They are also allowing Susan to sleep in the room with Erin. They will be almost right next door but Erin cannot see Elyse...not even through the bubble. We have pictures of Erin, Faith and the family in Elyse's room so I hope that will remind Elyse of her sisters.
Thank you for your prayers and your blood and platelet donations.
Posted by Elyse Yu at 7:38 PM
Saturday, September 15, 2007
Wow, it was a difficult day for Elyse today. I held her for most of the day and tried to give her some measure of comfort. She didn't smile once, which is rare. Instead, she cried, moaned and groaned the whole day. I think that her mouth is starting to hurt from the mucositis. She takes the nipple then hestiates a bit and spits it out and starts crying. I requested morphine for her twice today.
We are looking forward to Tuesday and hope that we can see a healthy Elyse soon. I spoke with some 3 of the BMT parents today in the hallway of the hospital. Gary's daughter Kiara (caring4kiara.com) is going home on Monday. I felt such joy for him and his family. Kiara has been at the BMT room for 2.5 months and I am sure that it would be nice to have Kiara at home and try to get back to "normal." But, it will take some time to get normal since they will have to maintain a dust free/germ free environment for Kiara once they get home. We were happy to see that Ethan and Keane are at the BMT ward with us...they are at day -7. They are always in good spirits and bring such life to the BMT ward. Please pray for us all.
Day -2, Susan will be with Elyse and I will get to spend some much awaited time with Faith and Erin at home.
Posted by Elyse Yu at 8:40 PM
Friday, September 14, 2007
Yesterday was a rough day for Elyse. Her rash spread all over her body. We don't know the cause of the rash. Labs were sent out to check for viruses and bacteria. We are hoping that neither is the cause of the rash. She may also be having a reaction to medication. When Tim and I came in this morning, her rash cleared up a lot. We were all relieved. She also started a chemo yesterday called rATG. As I mentioned in yesterday's post, she was given tylenol and benadryl to counteract possible reactions to the chemo. A few hours into the chemo, her heart rate jumped to 190 beats per minute and she woke up crying. She also spiked a fever and vomited. She didn't have much of an appetite but the nurses assured me that she won't get dehydrated because of all the fluids she's getting around the clock. Benadryl kept her sleeping most of the morning. She looked very groggy throughout the day. Today she'll be starting Cytoxan. This chemo can make her bladder bleed so she'll get extra hydration to flush out the chemo as quickly as possible. This afternoon she started to gag and cried inconsolably. The doctors said that she's probably really nauseated from all the chemo. So she's eating very little. She drank barely 4 ounces of formula all day. She may be having pain from the onset of mouth sores (mucositis). So she got two doses of morphine today. In a few days, if she stops eating all together (which is very common at this point in the process), she will receive IV nutrition until she can eat again. It's very painful to see my baby go through all this but I am looking forward to the finish line. I hope to see Elyse whole again soon. Today was an emotional day for the staff at the BMT Unit. A 21-month-old girl who stayed in the Unit for 14 months finally got to go home today. Her parents, doctors, and nurses cheered her on as she stepped outside her isolation room for the first time in 14 months. Many people were in tears. I can't imagine what their journey was like for 14 long months but she is well on her way to full recovery. Please pray for Elyse during this very grueling process.
Posted by Elyse Yu at 7:23 PM
Thursday, September 13, 2007
I finally got a moment to go online. It's 10am and Elyse is sleeping after a bath and got some benadryl for a rash that the doctors/nurses are monitoring. The rash may be a reaction to chemo. Elyse has not been sleeping well during the day. Yesterday she took one nap in the morning and she was up all day, just taking short 15-minute naps in my arms. When I try to put her down in her crib, she would cry inconsolably. She's not quite used to the new faces and new environment. It's very tough for her wake up alone at night and we're not there to pick her up. The nurses will hold her when she cries at night but I'm sure she misses the comfort of having a familiar face to soothe her. It's difficult to leave her at night but we need to go home and get rest so we can continue taking care of her.
I can't believe we're already on day -5. She finished 4 days of one type of chemo called Fludarabine yesterday. This chemo can cause seizures so she was getting anti-seizure medication along with the chemo. She'll get her last dose of Busulfan, another chemo, tonight. Today she'll start on a new chemo called rATG. This chemo has a high tendency to cause reactions so she'll be getting a dose of benadryl as a preventive measure. She'll also begin taking a steroid called MethylPrednisone. I hope that the side effects from all the medications are minimal. To give you an idea of all the medications that she's on ....they can be categorized into the following: 1) antibiotics 2) anti-viral 3) anti-fungal 4) anti-graft versus host disease
5) immunosuppresants (chemo) 6) temporary immunity 7) blood pressure 8) electrolyte replacement.
The transplant day (day 0) is Tuesday 9/18/07. We will be bringing in Erin on 9/17/07 for one last blood test and physical exam. Doctors will harvest her marrow on Day 0 and Elyse will get her transplant later that day.
Thank you for all your prayers.
Posted by Elyse Yu at 10:17 AM
Wednesday, September 12, 2007
I wanted to update you all on Elyse's condition. She's been getting 2 different Chemo meds daily since Monday and it looks like she is feeling the effects according to Susan and nurses at CHLA. It is difficult to see her struggle, but we are also looking forward to day 0.
Elyse's kidney test results came back with low marks, which means that her kidneys are not functioning at normal capacity. They are saying that her kidneys have been damaged and we will have to see if this is long term. We are praying that it isn't. Just, one more obstacle to overcome...right?
I would like to thank everyone for contacting George at CHLA to schedule a blood and platelet donation. Elyse may need another transfusion as early as tomorrow. Family members cannot give blood or platelets until after the BMT. We've had to rely heavily on our friends and Elyse's supporters till now and we thank you all for rising beyond our expectations. We are so blessed to have so many who care for Elyse.
Posted by Elyse Yu at 12:09 AM
Sunday, September 9, 2007
The coundown has started and we are at day -10. Elyse started her Chemo today and we were told that the effects of Chemo will not surface for a few days. We are always hoping for the best. I took some pictures of Elyse's BMT room and of her so please check them out.
I found out that Elyse can sit up by herself today (pictures). She might not be able to flip over like Faith and Elyse, but she is ahead of them in this area. I finally got to see Faith and Erin (awake) this morning. They have grown a bit in the past few days. They are so cute (no pictures...sorry).
CHLA is awesome! They have the best nurses and staff.
Posted by Elyse Yu at 1:46 PM
Saturday, September 8, 2007
Elyse was admitted to CHLA last week. She is currently in one of the Clean Rooms in the BMT ward. A central line was placed in her chest yesterday in preparation for Chemo and BMT and the PICC line in her leg was finally removed. It was strange to see the two tubes sticking out of her chest, but thankfully Elyse doesn't seem to mind that much.
Susan and I have been getting very little sleep for the past few days and need to get some rest soon if we are going to keep up with this schedule. I haven't seen Faith and Erin for 3 days now...I miss them. Susan finally went home today to take care of the Faith and Erin. I am here at the hospital posting this blog entry as Elyse sleeps.
The chemo treatment will start on Sunday. BMT should take place on Sep. 18th (day 0). We will have to take Erin early that morning. We are hoping that Erin will recovery quickly from the procedure.
Thank you all for volunteering to give blood and platelets. Please make an appointment to give with George at CHLA now that the date is set. Friends have told George that they will give blood and platelets as often as they would allow. Thank you all for that - we are moved by your love for Elyse. As we mentioned Elyse will need 2-3 Blood Donors and 2 platelet donors per week for now. We've gotten inquiries of whether people outside of California can donate. Unfortunately, you will have to come to CHLA to do this. Thank you for asking though.
I will post another update tomorrow after Elyse's first Chemo.
P.S. Dr. Hofstra, if you are reading this... Thank you. I hope you stop by and see how Elyse is doing.
Posted by Elyse Yu at 3:02 PM
Sunday, September 2, 2007
Elyse's schedule has been delayed due to scheduling issues for her pre-BMT examinations. We know that she will be admitted this month, but dates are still tentative. We will post dates when the hospital nails them down for us.
In the mean time we need your help. Elyse will require 2-3 blood & platelet infusions per week due to the symptoms caused by Chemo and pre-BMT drugs. The conditioning drugs causes sores and really drop blood counts, so we were told that it would be a good idea to get friends and family members to come in and donate blood and platelets at CHLA. Since she will need this for about 2 months from the time she is admitted, we need to spread out the blood donations. I will be scheduling the blood & platelet donation schedule so please email me.
If you are willing to help donate, here are the steps to follow:
- For blood and platelet donations, please read the information below first. Remember that Parking is free for blood and platelet donors, please ask for validation at the blood donation center's front desk.
- Contact George at CHLA Blood/Platelet Donation Center and tell him that you want to donate for Elyse Yu (Directed Donor). (323) 361-2370 or firstname.lastname@example.org
- CC me on all email or email me the confirmed dated for your donation.
- I will send you a reminder by email the day before your appointment date.
Blood Donation Information (from CHLA.org):
- Donor must be 17 years old.
- Donor must weight at least 110 pounds.
- Donors are required to bring a picture ID and one of the following: a driver's license number, passport number or SS number.
- Donors are encouraged to have a healthy meal before donating and to drink plenty of fluids.
- For Plateletpheresis donors only: Do not take any ibuprofen, aspirin or non steroidal anti-inflammatory medication 36 hours before your donation.
- Directed donors must present the following information at the time of donation: the patient's name (as registered in the hospital), date of birth and/or medical record number.
- A donor's blood type will not be determined before donation. If donor’s blood passes all tests, but is not of the appropriate blood type, it will automatically be released for use by other patients.There is no credit system for directed units donated at local hospitals, or any other collection agency.
Please do not donate if You:
- Are sick or not feeling well
- Have donated blood in the past 8 weeks
- Are pregnant
- Have a bleeding disorder or blood disease.
- Have had hepatitis after the age of 11 years
- Have had Babesiosis or Chagas disease
- Have ever received growth hormone made from human pituitary glands
- Have ever received a brain covering graft
- Or any of your blood relatives have Creutzfeldt-Jakob disease
- Have taken Tegison for psoriasis
- Have been injected with bovine (beef) insulin since 1980
- Have ever used a needle to inject nonprescription drugs (including steroids)
- Have taken clotting factor concentrates for a bleeding problem
- Have AIDS or have had a positive test for the AIDS virus
- Have taken money or drugs for sex since 1977
- Are a man and have had sex with another man since 1977
- Have been treated for syphilis or gonorrhea in the past 12 months
Thank you for your support. If we find that there are more than enough donors for Elyse, we encourage you to make a non directed donation so others may benefit. We also have the Denke's twins boys Ethan and Keane to support. We will make another request for donations on their behalf once we find out when they are ready for their BMT.
Posted by Elyse Yu at 11:23 AM
Monday, August 27, 2007
We finally got the necessary documents from Cincinnati. Erin will be Elyse's marrow donor. There have been lots of tests ordered in preparation for the BMT (Bone Marrow Transplant) and we have been busily taking Elyse and Erin to CHLA to finalize the required tests before Day Zero (Day of BMT). Susan and I are anxious to see Elyse whole again.
As we have explained briefly in previous posts, the BMT process will be an intense time of Pre-BMT Chemo to wipe out Elyse immune system, waiting to see if the graft has taken over successfully, hoping that none of the complications will occur, rearranging our schedules to give equal time to Elyse who will be in isolation at the hospital and to Faith and Erin who will be at home. I guess we will deal with it as we have been doing.
Friday will be the start of the whole process. Elyse will be hospitalized from this point on through BMT and recovery.
Friday - Central line in her chest / Remove the PICC in her leg
Tuesday (day -9) - Start Chemo to wipe out her immune system
Thursday - Sep 13 (Day 0) -BMT
After Thursday is dated (Day +1 and on...)
We need your help! After her immune system is completely destroyed with high-dose chemotherapy and after transplant, Elyse's blood counts will be very, very low. So, she will need blood and platelet infusions for 1-2 months on a regular basis. We are asking anyone who is willing to donate specifically to her to contact our friend JP at johnpark(at)mmyouth.org (replace "(at)" with @). We need a steady stream of people instead of a one time blood donation like we did in the past. Elyse will need 1-2 blood donors & 2-3 platelet donors spread out during the week. We've been told that men are better for platelets because they have better veins. Platelet donation takes approximately 2 hours, so please be advised.
Prayers...well there are so many prayer requests, but we will list the major ones only.
1) Elyse's health during this process. Pre-BMT Chemo has a lot of horrible side effects (short and long term). There are many complications that can arise after BMT.
2) Please pray for Susan and Me. We will not be staying overnight at the hospital since the Bone Marrow Transplant Unit does not allow caregivers to sleep overnight in the isolation room. The drive back and forth from L.A. to home everyday will have its challenges. We cannot get sick during this time or we will not be able to take care of any of our girls.
3) Erin as the donor will have to deal with anesthesia and recovery.
4) We hope that the stem cells will find its way to her bone marrow and grow quickly and successfully.
Thank you all for standing with us. Susan and I talked about how far we have come in 4 short months as we drove back home from the hospital today. We can still remember the situation go from bad to worse as we moved Elyse from Facey to Northridge and finally to CHLA. We also recall the concerned faces of friends and family members as they followed Elyse's progress. We could not have gone through this without your support. Getting through the last 4 months was truly a team effort. Thank you to our dear friends and family.
Posted by Elyse Yu at 10:02 PM
Friday, August 17, 2007
We have to make one correction to the last post. Results from Cincinnati are not in yet. We are still waiting for one last signature verifying the lab findings. I think we've been waiting for that one signature for 1 month now. Should we start a email campaign to Children's hospital in Cincinnati so that we can expedite the process? <----Half joking....half serious
We've been taking Elyse to the hospital many times for tests. We went in for her CT scan today, but couldn't go through with it because Elyse would not drink the contrast. We have to go back early on Monday. They will put a tube down her throat and drip the fluid in for one hour. I wish the nurse would have told us that we had to give her the contrast by a certain time so that we could have finished the CT scan by today. We will have to make Elyse fast again on Monday!
She may be admitted to the hospital by the end of the month. We need that letter to start.
Kayti, our drive organizer from Philly stopped by to see Elyse, Faith and Erin this week. It was great meeting for all of us. She brought an album filled with encouraging letters form the Philly marrow drive. I will scan and post them on Elyseyu.com - Encouragement section. You can see photos of Kayti and Elyse at Kayti's facebook site "kayti c."
Drives are continuing and we have some big results from the Bethel Marrow Drive thanks to our friends Steve and Joanne. 111 from Bethel. I heard from A3M that Steve was instrumental in getting the high recruitment numbers. Thanks Steve.
We have teamed up with the Denke Family , TCPOMC (Multiples Club) and DKMS Americas for a bone marrow drive in Chino Hills. More information to follow. Xander and Carrie have been busy promoting drives for Ethan and Keane. They have been mentioning Elyse everywhere they go as well. Thank you both. We hope to hear good news for Ethan and Keane in the near future.
More next time.
Posted by Elyse Yu at 8:43 PM
Wednesday, August 8, 2007
We have a lot of good news for you all. Please read on.
Good News #1:
Results are in from Cincinnati. Faith and Erin are fine.
Good News #2:
We've learned that Erin might be a possible match for Elyse. She is being further tested to see if she can be the donor. This is great since a sibling is the ideal match.
Good News #3:
Elyse might be admitted to CHLA to start prep work for BMT as early as next week with hopes that Erin will be the donor.
Outline of process:
1) Elyse's ankle PICC line will be removed in exchange for a more stable Hickman Line
2) Strong Chemo will be given for 1 week prior to BMT to wipe out her immune system (counted as negative days).
3) Other drugs and antibiotics will be administered
4) Many side effects from Chemo and drugs that I do not want to list at this time
5) Elyse will be in a sterile isolation room where only a designated number of people may enter.
6) Day of the BMT will count as day Zero
7) Recovery (1 month up to 1 year at the hospital depending on individual recovery results)
8) Discharged if everything goes well and the graft takes
9) Extremely cautious while at home
We hope that this news will not decrease the momentum for future bone marrow drives on Elyse's behalf. Please continue with the planned drives. Our intetion has always been to help as many people find a match through Elyse's Story and there is still a chance that Elyse might need to find an unrelated donor if Erin is unable to be the one.
Posted by Elyse Yu at 10:13 PM
Monday, July 30, 2007
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.
Posted by Elyse Yu at 10:18 PM
Monday, July 23, 2007
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 (email@example.com)
Posted by Elyse Yu at 4:40 PM
Wednesday, July 18, 2007
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.
Blood Drive Update:
Posted by Elyse Yu at 10:46 PM
Saturday, July 14, 2007
Wednesday, July 11, 2007
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.
Posted by Elyse Yu at 11:58 PM
Tuesday, July 10, 2007
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.
Posted by Elyse Yu at 3:44 PM