Wednesday, October 31, 2007

New Photos of Faith & Erin





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

Day By Day, And With Each Passing Moment


Day by day, and with each passing moment,
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.

Tuesday, October 30, 2007

Memorial Slide Show



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.

Monday, October 29, 2007

Organizing...

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.

Thursday, October 25, 2007

Moving On

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.

Saturday, October 20, 2007

7th Annual So Cal Histio Walk

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 (contact@elyseyu.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.

Yu Family

Friday, October 19, 2007

Mandalay Beach

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.

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.

Sunday, October 14, 2007

How we are doing

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.

Thursday, October 11, 2007

Elyse's Memorial Service

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

Monday, October 8, 2007

Elyse's Memorial Service


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 elysersvp@gmail.com by Tuesday 10AM.

Address:
Secret Garden
1925 W. Olympic Blvd.
Los Angeles, CA 90006
Tel: 213-380-9202

We hope to remember Elyse's short, but full life with you all on Thursday.

Love,

Yu Family

Saturday, October 6, 2007

Day +18 Good Bye For Now

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,

Yu Family

Friday, October 5, 2007

Day +17

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.

Thursday, October 4, 2007

Day +16

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.

Wednesday, October 3, 2007

Day +15 Beyond what we can see

Hello everyone,

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.

Day +15

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.

Tuesday, October 2, 2007

Day +14








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.

Monday, October 1, 2007

Day +13








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.