Light the Night

This past Thursday, October 4 was the 9th annual Heinz Field Light the Night walk. It is a way to raise money for The Leukemia and Lymphoma Society. It is a symbol of taking steps to find a cure. It is a way to celebrate and support the lives of those who have survived a blood cancer, those who are living with a blood cancer, and those who have passed away from a blood cancer.

Many people know by now that I met some amazing girls online while planning Joe and my wedding. Some I met in person. Many I never met in person. All were so supportive while Joe was sick, and we would find ourselves suddenly bombarded with cards and love throughout his journey. Shortly after Joe passed away, the girls decided they wanted to form a team to participate in Light the Night in memory of Joe. I was invited to walk with them, and my Monroeville parents and 1st uncle were able to join in the fun as well. It was a really amazing and overwhelming night. The walk was very peaceful. It was so touching to see all the people on our team wearing tags that said, "Joe Lin." Most of them had never even met Joe before. It was overwhelming to see how many people were affected by blood cancer, and to just feel the emotions that filled the air that night. I'm so grateful to the girls (and their families) that participated (I swiped the group photo from one of them!).

My cousin Lillian was in town this weekend. We had a wonderful weekend of cousin bonding. We also got very little sleep. The two of us could get jobs as professional sleepers, so the fact that we were willing to sacrifice sleep to spend time together is a big deal! I miss her already.

Today marks one month since Joe passed away. This month has felt like a hundred years. I know Joe wants me to celebrate his life by living my life. This makes it a little bit easier to go through each day with a smile on my face and a smile on my heart. (And you know Joe is still pulling strings up there. Joe always knew the importance of remaining humble, which explains the Steelers last week. This week Joe let our boys show off a bit.) I know I don't have to smile all of the time (and I don't), but the times when there is a smile on my face are the times I know for sure that Joe is guarding my heart. He's my guardian angel.

Memories by Mike Chang

Because I know that many were not able to attend the service, and because many have expressed an interest in reading what was shared again, and simply because I want to - I am posting the eulogies from Joe's service here on my blog. I will also be sharing memories from others who have offered to share. (If you'd like to contribute, just email me - there is a link in the profile).

Michael Chang and Joe have been best friends since 5th grade (He's number 32). He was one of the speakers at Joe's service. Amongst Joe's childhood friends, Mike would be classified as one of the "good" ones. That is, he was either better behaved than the others, or better at pretending to be better behaved. Whenever Joe would get on the phone with Mike, I knew I would have several hours to myself. That is how close they were.

I've known Joe almost my entire life, and I just wanted to share a few of my memories of Joe and why he was so special to me. We met when we were in elementary school over 20 years ago, and throughout all of these years I have never known a more compassionate, generous and loving person. We've been through so much together since we were kids, and Joe has definitely been one of the greatest friends I could've ever asked for. I've always considered Joe to be like a brother to me, as he has been as close to me as my own family.

I've been taking a lot of time this week reflecting on the years I've known Joe and the time we've spent together. A lot of my memories are of Joe and I just talking for hours and hours on the phone during high school, and chatting and goofing off during class. I'm not even sure what we talked about most of the time, but I think we shared that special bond where we could just enjoy each other's company and talk about almost anything. And later in life when we didn't see each other as often and wouldn't talk for months, we could still pick up the phone and chat as if no time had passed at all.

I also remember other random things such as partnering up for school assignments, science fair projects and the science Olympiad. I always thought we made a great team, even though we did get slaughtered a few of those times. I remember one event we did called “write it-do-it” where basically Joe would have to look at a structure built of Legos and tinker toys, write instructions for me to follow, and then I'd have to come in and rebuild the structure from scratch without having seen it, based only on his instructions. It sounded simple enough and we thought we'd do great since we knew each other so well, but let me tell you, when I finished I ended up with some sorry looking thing that I knew wasn't even close to what it should've looked like. It was just a total disaster. I walked out of the room totally embarrassed, took one look at Joe, and the two of us just started laughing and laughing. It always seemed like we had the most fun those times when we screwed up the worst.

My other memories of Joe are of all those times we spent hanging out at his house. Pretty much whenever we had nothing to do, we'd just go ahead and invite ourselves over to Joe's house or show up randomly unannounced to play some video games or ping-pong or something. And we could convert that basement of his into just about anything. We'd play baseball with this little souvenir bat of his, or we'd play some nerf football. We even tried to play hockey down there for a while, although that one didn't work too well. And whenever we'd show up, Joe would always be a good sport about it too and at least pretend to be happy to see us . . . well, most of the time.

I'll also miss the great road trips and golf vacations we'd take every few years. Really when I think about it, almost all of my happy memories growing up and over the recent years have involved Joe. He has been such a large part of my life and he has touched my life so deeply. I will miss him tremendously but he will always continue to live on in my heart and in my memories.

Now I just want to say a few brief words to Joe's family.

To Joe's wife Karen – even though I have a ton of great memories with Joe, I have to say that I've never seen him as happy as he's been with you over the last few years – and I truly mean that. You two complemented each other perfectly and with you by his side, I think he was able to find an inner peace and happiness that may have been missing before he met you. It was really quite remarkable to see, but at the same time, I think it was also very obvious to those around you two. You truly were a special blessing in his life.

I want to say to Joe's mom and dad that you should be extremely proud to have raised such a genuine and caring son. Joe was such an amazing person, and a true testament to the both of you.

And to Joe's little brother Albert, I want to say that from talking to Joe I know that he was really proud of you in a big brother kind of way. Whenever we'd talk about you, you could just hear it in his voice. He loved you very much.

And I want to finish with a simple message to Joe – who I'm sure is listening to all of us right now. Thanks for all the memories, and for being such a great friend. I'll miss you.

Thank you.

I want to thank everyone, from the bottom of my heart, for the overwhelming amount of love and support extended to me and my families this past year - and especially this past month. It has been an extremely challenging year, to put it mildly. Yet despite all of the heartache, despite the hardships, despite the fact that I miss my husband more than I thought possible, I have experienced something beautiful. I wish that Joe and I could have learned what we learned without him enduring so much suffering, and without him being called home so soon. I wish we had the opportunity to take what we learned and grow old together, travel the world, experience parenthood. I wish and I wished for so much. But ultimately, the prayer of our hearts was that the desires of our hearts would match God's will for us. God has a greater plan in all of this that I have no right to question. I do feel that I have been privileged enough to catch just a glimpse of that greater plan, and what I have seen is stunningly beautiful. The Lord used Joe in a mighty way. One of Joe's attendings at West Penn told Joe at the beginning of his journey, "you have been called to active duty." Joe stepped up to that challenge with such grace, beauty, and faith.

Joe stated in his last week, "I feel that I still have a lot of living that I could do. But I also feel that I've lived a full life. If God feels it's my time to go home, then I'm ready. And if all that I have been through has helped other people to live better...that makes me happy."

Knowing this has given me incredible peace in my heart. Sure, I still hurt. But there is also a joy in knowing that Joe "pressed on toward the goal to win the prize for which God has called him heavenward in Christ Jesus." There is joy in knowing that God truly used Joe to touch so many lives. There is joy in knowing that Joe is finally in a place with no tears, no fears, no pain, and no worries. And let's be honest here, there is joy in knowing that Joe must be pulling some strings up in heaven, because HOW ABOUT THEM STEELERS??????

So many people attended the viewing. So many people attended the funeral. So many people have written comments, sent emails, cards, gifts, and called us. It has been amazing to hear how Joe's life impacted so many others. I must say that I wasn't surprised. Joe helped me to change so much. And he helped our brothers and parents to change so much. What humbled me was the number of people who were inspired by me. I risk sounding cliche, and even fake or conceited, but I believe that anyone in my shoes would have done the same - possibly even more. Joe was the best husband for me, and what I did for him pales in comparison to what he did for me. Even when he was so sick and needed help doing everyday things we all take for granted he was loving, patient, and apologetic towards me. I love him so very much. Throughout our journey, I know that many people questioned the fact that I stopped working. The thing is, while I believed Joe would survive that stupid leukemia, I also recognized that we were contending with something very ugly. Because I had the privilege of being able to stop working I had to do it. I never wanted to look back and regret not spending enough time with Joe. Turns out, even under the circumstances, the time I had with Joe this past year holds some of my most cherished memories. We had a rare opportunity granted to very few couples, to be in a situation in which all of the "stuff" that makes up a relationship was filtered down to what was most important. And so...just to up the sap factor here, I present to you our wedding vows...

In the presence of God, our family and friends, I offer you my solemn vow to be your faithful partner in sickness and in health, in good times and in bad, and in joy as well as in sorrow. I promise to love you unconditionally, to support you in your goals, to honor and respect you, to laugh with you and cry with you, and to cherish you for as long as we both shall live.

The neat thing is that while we shared our vows in the presence of God, our family and friends - through the wild and crazy world of blogging we were also given the opportunity to live out our vows in the presence of God, our family, and friends.

I have so much to be thankful for. I truly do. I am humbled by all of the love that has been extended towards us and I'm not quite sure how I will ever be able to justifiably express my gratitude. One thing that I aim to do is to do continue the journey that Joe started and stand up to the challenge of being called to active duty.
~~~~~
Translation by my Indiana Dad...

謝謝您 (Thank You ) Translation

一年來我和我家人得到的愛和支持是無限的﹐我衷心的感謝每一位朋友...特別是最後這一個月。這最具挑戰的一年我用語言無法表達出來。只是不管我多麼心痛﹐多麼艱困﹐多麼思念我的丈夫﹐我還是有一些美麗的經驗。我希望耕歆可以和我一樣學這麼多﹐而不必遭受那麼大的折磨﹐也不必那麼快就蒙召。我希望我們可以用學到的東西一起活到老﹐一起周遊世界﹐一起做父母。我以前希望過﹐現在還是這麼想。我們迫切的祈禱,希望心裡要求的和神的計劃可以一致。
可是到頭來神有更大的計劃,我無法違背。我覺得神已經給我有機會一窺那偉大的計劃了﹐那確實是非常美麗的。上主用耕歆完成更偉大的事工。耕歆初發病時﹐他的主治醫師跟他說﹕你被征召應戰了。耕歆用恩光﹐美麗和信心接受這個挑戰。
上週耕歆說﹕我覺得還可以繼續生活下去好做很多事。我也覺得我已經有過充實的生命了。如果神認定我該走了﹐我已無憾。如果我所經歷的會讓別人生活得更好-那我就快樂了。
這番話讓我心裡有意想不到的平安。雖然我仍傷痛﹐可是我也心覺喜樂知道耕歆衝向目標﹐在主耶穌裡進入天國﹐得神獎賞。我覺得喜樂因為神用耕歆來感動許多人。我覺得喜樂因為知道耕歆在那裡沒有眼淚﹐沒有懼怕﹐沒有痛苦﹐沒有憂慮。坦白一點說﹐我覺得喜樂因為耕歆在天國一定在拉什麼線﹐不然怎麼匹玆堡鋼人足球隊忽然贏得刮刮叫﹖
那麼多朋友來看耕歆最後一面﹐參加告別禮拜﹐寫感言﹐寫電子信﹐送卡片﹐禮物﹐打電話鼓勵。很驚喜耕歆的一生會影響那麼多人。但是我也不覺得奇怪。
耕歆大大地改變了我﹐也改變了我兩個弟弟﹐我兩邊的父母親。讓我更感謙虛的是我能啟發那麼多人的心靈。別笑我假惺惺﹐我認為任何人在我的情況下也會這麼做的﹐甚至做得更好。耕歆是我可能得到最好的丈夫﹐他為我做的遠勝過我為他做的﹐縱然他病得很厲害﹐我幫他做些平凡事﹐他也表現出對我的關心﹐忍耐和歉意。我愛他甚深。發病初期﹐有人關心我為何要辭職﹐事實上是﹐我相信耕歆可以贏過這討厭的白血病﹐我們也了解到後果可以很惡劣。既然有所選擇﹐我非辭不可。我要儘量和耕歆在一起﹐以免後悔。即使在這種情況下﹐這一年我還是擁有最珍貴的回憶。我們有別人難有的機會﹐把夫妻生活在一起的點點滴滴過濾到最重要的一點。那就是--我想為您重溫耕歆和我的結婚誓約--
在神﹐家人﹐朋友面前﹐我宣誓對您的忠誠﹐不管生病或健康﹐好時光或壞時光﹐快樂或悲傷﹐我會無條件的愛您﹐支持您達成目標。尊敬您﹐以您為榮。和您一起笑﹐和您一起哭。一輩子珍愛您。

難得的是我們對神﹐家人﹐朋友的這一宣誓﹐可以有機會經過這無遠弗屆的布落格向大家見證說我們做到了。
我真的有很多要感謝的。這麼多朋友對我們的愛讓我更感謙卑﹐我真不知道要怎麼樣做才能適當的表達我的感激。有一個目標我想做的是﹐我將追隨耕歆一年前堅強接受的征召和挑戰﹐繼續完成這個使命。

林(藍) 佳連 Karen Lin

Retreat

Hello! Just popping in to say that I still have plenty to share for those who are still willing to read. But this week I'm on a bit of a retreat with my Monroeville parents, "middle" brother, and 1st uncle. (We dropped the whole "in-law" bit last week. ) So far this retreat of ours has been quite refreshing and healing. Stay tuned...I promise to continue blabbing my heart out for awhile.

Please pray for the family of Amy Wilhoite. Amy went home to be with the Lord on Monday, September 10, 2007. We never met her in person, but oh what an encouragement she was in our journey. She was diagnosed only a week after Joe, and Joe always remarked about how much more difficult her journey seemed to be. In recent months, the two of them seemed to be traveling a more parallel path. Now Joe and Amy are hanging out in heaven...likely being given a grand tour by Baby Alivia and a host of other angels.

Announcement/Guest Book

Announcement

Guest Book

Viewing & Funeral

Joseph Lin (July 3, 1974-September 7, 2007)

Friends and relatives will be received at
JOBE FUNERAL HOME
Corner of Beatty Road and Route 48 North
Monroeville, PA 15146
Phone: (412) 856-4747
http://jobefuneralhome.com/

Friday, September 14, 2007 from
2-4pm and 7-9pm



Funeral Service will be held at
Pittsburgh Chinese Church - Perry Location
8711 Old Perry Hwy.
Pittsburgh, PA 15237
Phone: (412)366-9770
http://www.pghchinesechurch.org/en/pcc_locate.htm

Saturday, September 15, 2007 at
10:30am

Lunch will be provided immediately after the service in the church social hall.
~~~~~
Memorial contributions maybe made to the
Cammy Lee Leukemia Foundation
16 West 32 St., Suite 10D
New York, NY 10001-3808

or

Pittsburgh Chinese Church
8711 Old Perry Hwy.
Pittsburgh, PA 15237

or

any of the other charities listed in our links. Thank you.

A new journey.

Friday, September 7, 2007 at 8:10pm, dear beloved Joseph went home to be with the Lord. He probably just wanted to make sure that he had the best seats for the Steeler game on Sunday...and maybe he is having a discussion with God about changing the color of the clouds to black and gold.

I didn't know that it was possible to feel complete peace and completely broken hearted at the same time. I do still believe in miracles. The miracle was Joe. And complete healing happened the instant Joe went home.

Please continue to pray for our families.

The longest day.

Today was the longest day that we have ever experienced. This whole week has been so very hard. I'm not even sure what to say. Please pray for our families. Each day this week Joe's breathing has steadily declined. He went from nasal cannnula, to oxygen mask, to non-rebreather, to BiPap. Joe was also drowsy each day from pre-medication and pain medicine. However, Joe amazed everyone each day. As sick as he was, Joe would make the effort to sit up a bit each day. When talking to him, it was clear that he was lucid. He brought up fun memories, reminded certain people about certain important dates, and made goofy Joe jokes.

Albert and I have been staying with Joe around the clock. It was great to have some company and support. We had several mini-scares this week, but Joe kept pulling through.

This morning was different. In the wee hours of the morning, while Albert and I were helping Joe we noticed that he was a very different person from yesterday. He just couldn't seem to focus or make eye contact. With the family, we had to make the extremely difficult decision of having Joe moved to the ICU. There he can be monitored around the clock and given the attention and care he needs as he continues to be treated for his infection. The hardest part of all was that Joe had to be intubated. It was just the saddest day. Joe is heavily sedated, so we keep telling ourselves he is just resting. He has been putting up such a hard fight!

We are still holding on to hope though. It is amazing how many lives Joe has touched. He is SO loved. There wasn't a dry eye on on T-7 today. Joe has befriended all the nurses, housekeeping, and dietary staff. You know that is just a tiny fraction of the people who love Joe and are storming heaven with prayers.

I have to leave you with a story and my current source of hope. Last year, I volunteered to help with Vacation Bible School at our church. I was in charge of Bible Adventures. It is a station that the kids rotate through each day. We do interactve skits that share a bit about an event in the Bible. Well, I kept begging my dear sweet husband to help me out at least one of the days. He made some silly excuses, but ultimately agreed to help me one of the nights...because he loves me. Thursday, June 22, 2006 was the day before Joe was diagnosed. I went to the church first; Joe planned to meet me there. Unbeknownst to me, while Joe was getting ready at home, he was suddenly overcome with a feeling of darkness. This is when he decided to get his blood drawn the next day.

At church, Joe did a stellar job of entertaining the kids. Interestingly enough, he played the role of Lazarus. I played the role of Levi. In the skit, we played best friends. I was mourning the death of Lazarus and telling the kids about my buddy. Then suddenly, a knock at the door. It was Lazarus! He emerged with an armful of bandages and shared the story of Jesus raising him from the dead. Oh joy!

One day later, Joe was told he probably had leukemia. Let me tell you. I can not get that day of VBS out of my head. Right now, in my heart, I can't help but believe that maybe that was a sign. Maybe, God was preparing me. Because now, I feel my heart breaking because of what Joe is going through. I just feel so broken. And yet...I know that Jesus loves Joe, just as he loved Lazarus. So I continue to hope and pray for a similar miracle...Jesus said, "Did I not tell you that if you believed, you would see the glory of God?" Praying. Praying. Praying.

The Death of Lazarus
1Now a man named Lazarus was sick. He was from Bethany, the village of Mary and her sister Martha. 2This Mary, whose brother Lazarus now lay sick, was the same one who poured perfume on the Lord and wiped his feet with her hair. 3So the sisters sent word to Jesus, "Lord, the one you love is sick."

4When he heard this, Jesus said, "This sickness will not end in death. No, it is for God's glory so that God's Son may be glorified through it." 5Jesus loved Martha and her sister and Lazarus. 6Yet when he heard that Lazarus was sick, he stayed where he was two more days.

7Then he said to his disciples, "Let us go back to Judea."

8"But Rabbi," they said, "a short while ago the Jews tried to stone you, and yet you are going back there?"

9Jesus answered, "Are there not twelve hours of daylight? A man who walks by day will not stumble, for he sees by this world's light. 10It is when he walks by night that he stumbles, for he has no light."

11After he had said this, he went on to tell them, "Our friend Lazarus has fallen asleep; but I am going there to wake him up."

12His disciples replied, "Lord, if he sleeps, he will get better." 13Jesus had been speaking of his death, but his disciples thought he meant natural sleep.

14So then he told them plainly, "Lazarus is dead, 15and for your sake I am glad I was not there, so that you may believe. But let us go to him."
16Then Thomas (called Didymus) said to the rest of the disciples, "Let us also go, that we may die with him."

Jesus Comforts the Sisters
17On his arrival, Jesus found that Lazarus had already been in the tomb for four days. 18Bethany was less than two miles from Jerusalem, 19and many Jews had come to Martha and Mary to comfort them in the loss of their brother. 20When Martha heard that Jesus was coming, she went out to meet him, but Mary stayed at home.

21"Lord," Martha said to Jesus, "if you had been here, my brother would not have died. 22But I know that even now God will give you whatever you ask."

23Jesus said to her, "Your brother will rise again."

24Martha answered, "I know he will rise again in the resurrection at the last day."

25Jesus said to her, "I am the resurrection and the life. He who believes in me will live, even though he dies; 26and whoever lives and believes in me will never die. Do you believe this?"

27"Yes, Lord," she told him, "I believe that you are the Christ, the Son of God, who was to come into the world."

28And after she had said this, she went back and called her sister Mary aside. "The Teacher is here," she said, "and is asking for you." 29When Mary heard this, she got up quickly and went to him. 30Now Jesus had not yet entered the village, but was still at the place where Martha had met him. 31When the Jews who had been with Mary in the house, comforting her, noticed how quickly she got up and went out, they followed her, supposing she was going to the tomb to mourn there.

32When Mary reached the place where Jesus was and saw him, she fell at his feet and said, "Lord, if you had been here, my brother would not have died."

33When Jesus saw her weeping, and the Jews who had come along with her also weeping, he was deeply moved in spirit and troubled.

34"Where have you laid him?" he asked.
"Come and see, Lord," they replied.

35Jesus wept.

36Then the Jews said, "See how he loved him!"

37But some of them said, "Could not he who opened the eyes of the blind man have kept this man from dying?"

Jesus Raises Lazarus From the Dead
38Jesus, once more deeply moved, came to the tomb. It was a cave with a stone laid across the entrance. 39"Take away the stone," he said. "But, Lord," said Martha, the sister of the dead man, "by this time there is a bad odor, for he has been there four days."

40Then Jesus said, "Did I not tell you that if you believed, you would see the glory of God?"

41So they took away the stone. Then Jesus looked up and said, "Father, I thank you that you have heard me. 42I knew that you always hear me, but I said this for the benefit of the people standing here, that they may believe that you sent me."

43When he had said this, Jesus called in a loud voice, "Lazarus, come out!" 44The dead man came out, his hands and feet wrapped with strips of linen, and a cloth around his face.
Jesus said to them, "Take off the grave clothes and let him go."

~John 11:1-43

The Cliff note version of the Cliff note version of events.

The latest news is that between the blood cultures, skin biopsies, and Joe's clinical picture, he has a type of fungus called Fusarium. It is so confusing because with skin biopsies, Fusarium and Aspergillus look the same. However with blood cultures, they look different. Fusarium is pretty rare and there is not a lot of data out there as far as treating it. Much of what is available is really depressing. Because of this, a pretty dismal picture was painted for us. We were put in high-time panic mode and there was a lot of confusion, misunderstandings, and miscommunication. The holiday weekend and the non-availability of a lot of doctors did not help matters any. We are still fighting the hardest battle ever (and we've made sure that the doctors are fighting with us too!). We are dealing with so much scary stuff. Each day is an extreme roller coaster. But honestly, I have never known a person as determined and strong-willed as Joe is right now. We also have the most amazing support system ever. Three of Joe's best friends and Joe's New Jersey parents hightailed it to Pittsburgh as soon as Joe spoke with them. Albert is in town and has been an incredible blessing. My brother is home. And duh...our parents are the best ever. Joe's friends and New Jersey parents are back home now, but it was just the greatest thing to see the smile on Joe's face...even through his oxygen mask. (Yup, he's back on oxygen.) Thank you to everyone who has been writing, calling, commenting, praying. We are overwhelmed with all of the support. Ultimately, all of our trust is in God. We believe in miracles, and our faith is unwavering.

I wanted to share a prayer that our friend Jenny Lin wrote. It is beautiful and is truly the prayer of our hearts...(thank you Jenny!)

"Dear God,
Thank you for chasing after Joe, for chasing after his heart, and for claiming Joe as your precious son. Thank you for who you created Joe to be - a gentle soul, a courageous soul, a hopeful soul, and a faithful man of God. Life dealt him a really crappy leukemia card & uprooted all of his plans, but Joe & Karen have responded by holding onto faith, holding onto your promises for a full & abundant life, holding onto YOU Lord!!!! They have always declared that you are the sole author of Joe's life, and that God Is Good, All the Time! How difficult it is to declare your goodness when life is not good!

Lord, we collectively cry out to you on Joe's behalf and ask you to HEAL him of this dreadful disease, clear his bloodstream of this fungal infection, raise up an army of white blood cells, and help his body fight back Lord!!! Pour your protection upon him Lord!!! Pour your life-giving healing into Joe's bloodstream, Lord!!! Give him a fighting chance, Lord!!! Help him declare victory over this infection, Lord. Where medicine is limited, your healing powers are infinite. We fully believe that you have the power to make miracles happen. We fully believe that you have already saved Joe's spiritual life. We declare your sovereignty over Joe and over this disease Lord. Please save Joe's physical life!!! It is by your grace alone that Joe beats this and we're begging you to protect him Lord.

God you know the deepest prayers of our hearts even when we can't articulate them. I pray for comfort for Joe, Karen, the Lins, and the Lans.
Maranatha,
-jennylin"

We received some devastating news this morning. We are still fighting with all of our might, and ignoring any stupid statistics. But we could sure use a whole lot of prayers and a miracle or two. Please join us in storming heaven with prayers.

We've shed an ocean of tears, but we are still full of hope, faith, and strength.
Thanks for all of the love and support that has been coming our way.

Prayer

It has been an extremely challenging week. More and more, this whole journey feels like an extreme video game. Every time Joe overcomes the evils of one level, he discovers that there is another level with bigger and tougher evils. We just keep waiting for that day when we learn that Joe has beat every single level and won the whole game!

Initially we were happy, because Joe finished chemo this week, and the cultures for VRE were all coming up negative. (Still a praise.)

Unfortunately, Joe developed some curious red spots. He started with just two, and we didn't think much of it. Then a few more spots appeared, and Joe's legs and arms were feeling a bit sore. We thought that maybe it was from the chemotherapy. We kept the doctors informed. The spots continued to increase, and the soreness in Joe's legs and arms turned into pain. Joe felt as though he was feeling the after effects of an EXTREME workout...multiplied by a hundred. It got to the point that Joe was unable to stand on his own.

A skin biopsy was done. The doctors suspected a fungal infection and braced themselves for the results. Yesterday morning, the infectious disease doctor told us that Joe did in fact have a fungal infection. He also mentioned that it might possibly be Mucormycosis. Fortunately, at the time we were blissfully ignorant about what this diagnosis would mean. We later learned that that diagnosis would be just about the worst news possible. So bad in fact that the person who relayed the message to Joe's primary hem-onc doctor was in tears. Joe had already been on the drug (posaconazole) that is used to treat mucormycosis. It is a very new drug which gives a lot of hope to patients now. But since Joe was already on it, there wouldn't be much left to do since an infection would mean resistance was developed to the drug. Like I mentioned already, it is a good thing we were blissfully unaware.

Less than an hour later, Joe's primary hem-onc doctor informed us that Joe did not have a mocormycosis infection, he had aspergillus. This was not good news, or even better news. But it was less bad news. This is treatable. It won't be easy...but what part of leukemia is easy? The wonderful news is that Joe is a fighter. He has been through all kinds of challenges, including the evil lung challenge, and overcome every single one. So a plan was formed. Joe's treatment will have five parts.

1. Voriconazole - Joe was taken off the posaconzole, which isn't so effective against aspergillus and switched to voriconazole which is effective. We have since learned that this drug can cause some hallucinations, which explains why Joe was conversing with people in his sleep all night.

2. Abelcet (amphotericin) - This drug has been nicknamed amphoterrible. It causes chills, which Joe experienced yesterday. Today, Joe was premedicated before the getting the Abelcet and avoided the chills. Yay!

3. Granulocyte Infusion Therapy - This is basically an infusion of white cells. It is not a very common procedure and seems to be reserved for cases like Joe's current situation in which he has a serious fungal infection and virtually no white blood cells of his own to fight off the infection. Apparently there is a data base of donors, and Joe was matched with someone and received his first bag of cells today.

4. GM-CSF (Leukine) - This is kind of like Neupogen which Joe used to get to increase his neutrophil count. Instead of an injection, this runs as an IV over 4 hours.

5. Prayer - Yup, this prescription came straight from the doctor. Fortunately, all of our readers and even our non-readers have proved to be really good at praying.

Joe will be receiving all of the above every day. (We are convinced that it is all starting to work already.) Next week, Joe will be getting bone marrow biopsy #12. This biopsy is super duper important and will determine much of what follows. So please pray for this aspergillus to be taken care of and for perfect bone marrow results!!!!!

Joe is still in a lot of pain. He is receiving pain meds around the clock after a consult with a really sweet and amazing doctor. Joe is able to move a little bit more than before which is good. The drugs really making him woozy though. When you talk to Joe you immediately realize that his head is super clear, but he sounds like he's drunk! Joe also says that he feels that he knows what it is like to have narcolepsy. He keep falling asleep at random moments. Breakfast this morning was a bit messy as Joe would fall asleep while stirring his hot chocolate or eating his toast. It all gives us something to laugh about!

We had a bit of a good cry yesterday morning, and now we are once again full of hope, faith, and strength. Joe is absolutely amazing. All the doctors and nurses keep remarking about how well he has been handling everything. Stubbornly optimistic. That's us. God is good...all the time.

chemo

Well, Joe's cultures from Tuesday ended up becoming positive after 48 hours. However, Joe remained afebrile. Because Joe was feeling quite well and had no worrying symptoms, the doctors decided to just jump right in and start chemo on Thursday. On the one hand, it's not ideal to start chemo when there is some type of infection. On the other hand, Joe was already lacking any WBC that might help to fight off the infection. The doctors decided that it would be best to start chemo before Joe's disease decides to rear it's ugly head again rather than wait for the cultures to become negative - which could take weeks.

Joe is doing well so far. His appetite is still pretty good. We just keep praying for negative cultures and for the chemo to do its job! Chemo started on Thursday evening, so Joe will be done on Tuesday evening. There was a bit of a mix-up with the "+2" part of the chemo. Not a big deal. Because of the mix-up Joe didn't get his daunorubicin on the first two days of his regimen. He'll be getting it on the last two days now, and that's okay. Apparently that's how they do things in Europe, anyway. So Joe's treatments have a bit of European flair this time. Classy, eh?
~~~~~
A very Happy Birthday to Louis!!! Hope you're able to celebrate in style.

A big congratulations to April & Paul who got married last weekend. :)

hey there fever. stay away!

Joe had an eventful weekend. The fun part was the visitors. Albert was able to come back for a brief visit. A visit from Albert is always guaranteed to put a HUGE smile on Joe's face. The smile on Joe's face was even bigger and brighter this past weekend though because Joe's 1st uncle & aunt and 2nd uncle also came for a visit. It was Joe's 1st uncle & aunt's first trip to America. It was a lot of fun bonding and chatting. By the end of the weekend it was determined that when that wonderful day comes when Joe and I are able to plan a trip to Taiwan together - we'll have to set aside several months! Between my relatives and his relatives...oh boy, oh boy. It'll be fun, and we are having fun dreaming.

The drama side of the weekend is that the "negative" culture result we received on Saturday was a bit premature. Those cultures did end up being positive after all. As a precaution, and because fellows like to cover their butt and order everything under the sun, on Sunday Joe had a CT of the chest, abdomen and pelvis. Nothing remarkable was found, except some improvement in Joe's lungs compared to the previous chest CT. An ultrasound of the neck was also ordered and performed on Monday. We're still not quite sure why it was ordered, but it gave Joe another excuse to visit the radiology department. Within five minutes of being in the waiting area, Joe had about ten people go and greet him. I'm sure the other patients were wondering what kind of celebrity was sitting before them! Again, nothing remarkable was found.

On Monday, Joe was also taken off of Daptomycin and started on Linezolid. Because Joe's WBC is so low, Linezolid seemed a better choice. Each day since the discovery of the bacteria, Joe has woken up with a fever. The fever generally lasts a few hours and then Joe is afebrile until the next morning. This morning was the first time that Joe woke up without a fever. Woohooo! Also, 21 hours after yesterdays culture, it was still negative. This is a good sign, and the huge smile that Joe's dad was sportin' all day is proof of that. So now, chemo could start as soon as tomorrow. For real this time.

Just like Joe's first round of induction chemotherapy, Joe will be getting cytarabine (Ara-C) and daunorubicin. The last round was a "7+3" regimen. Joe received cytarabine continuously for seven days (7). For the first three days Joe also received daunorubicin, the fifteen minute infusion that looks like cherry kool-aid (+3). This round will be shorter, a "5+2" regimen. So five continuous days of Ara-C, and daunarubicin the first two days.

Other interesting news. Joe's fingers have been peeling for a couple weeks now. It was very similar to when Joe started getting GVHD. Interestingly enough, some final results from Joe's last bone marrow biopsy showed that Joe still now has 5% donor in his marrow. So the peeling is definitely from GVHD. Now since the donor has survived all the post-transplant chemo Joe has had so far...how neat would be if it survived this next round as well, and blossomed! Nothing's impossible right? Something to think about. What is even more interesting and strange is that Joe's marrow went on to show 25% male. So what was the other 70%? It was x0. That is, a single x chromosome. We have no idea what this means...except that it does NOT mean that Joe has Turner Syndrome. Very strange.

Joe has remained CMV negative for several weeks now. Yay! He has had 115 platelet transfusions and 32 units of blood since May 21. His appetite isn't too bad. And yes, he is thinking about new paint colors for his room, ordering new furniture, building an addition, and requesting that the room be named in his honor!

Jim and Jesse completed the Marrow Trek! Read their last Blog entry if you haven't already. They are truly amazing guys. THANK YOU Jim and Jesse for being such amazing friends!!!!!
~~~~~
Thank you 1st Uncle & Auntie, 2nd Uncle, and Albert for visiting!!!!! Joe was so happy to see each one of you.

Thank you to Uncle and Auntie Tzeng and LeeAnn for your visit. It was really nice to catch up with you.

Thank you Phyllis, Auntie & Uncle R.C. Lin, & Auntie Tzeng for the cards. They always brighten Joe's day.

Yoohoo, HANNAH (banana) HAPPY HAPPY 4th birthday!!!!!!
And congratulations to Sheena (Mareena) on being an Aunt!

And so the journey continues...

Yesterday, the bacteria found in Joe's blood stream was determined to be VRE (vancomycin-resistant enterococcus) and Staphylococcus epidermidis. Traditionally, VRE has been difficult to treat and can be really dangerous in patients who are immuno-compromised. Fortunately, times have changed and lots of advancements have been made. There are now a few drugs that can be used to effectively treat VRE. Joe was put on daptomycin a couple days ago with the thought that he probably had VRE. Dapto is also effective for treating the staph. So far Joe's fevers have been trending down, so it seems that he is responding well to the drug.

Also yesterday, Joe's Pittsburgh docs spoke with his assigned Minnesota doc. Looking at the 5% of "stuff" from the bone marrow biopsy, blasts were still present. Since Minnesota will be responsible for Joe's next transplant, Joe's doctors here wanted to consult with them about what to do next so that there would be no chance of compromising Joe's opportunity to go up there. The doctor in Minnesota was really encouraged by Joe's response to the first round of induction chemo. He also said he would be more comfortable if everything was wiped out. So Joe will be getting another round of chemo. The same drugs will be used, since Joe did so well the first time, but this time it will be a "5+2" regimen rather than a "7+3."

So, Joe will not be getting kicked out any time soon. Poor guy. The plan is to get rid of the bacterica in the blood stream first. Cultures from yesterday came back negative. So if another set of cultures returns negative, Joe could begin chemo as soon as tomorrow.

Yesterday was a really overwhelming day as we were getting bit and pieces of information here and there. Joe needed blood and platelet transfusions. He was a bit short of breath in the morning and needed to use some oxygen for a few hours. Joe had chills for about 20 minutes after his first bag of platelets. We got information about the bacteria in the bloodstream. All kinds of tests were ordered. It was just a crazy day. Fortunately, by afternoon we received a lot of answers and a plan for the next week. After some frustration, we're feeling more renewed and ready to continue fighting. But you know, I REALLY wish that Joe could just get out of the hospital and be free! He has been through so very much. Being a patient is so tough. Besides all of the obvious sacrifices, you sacrifice your privacy and your dignity. It is really a crazy life. I admire Joe and all the other people going through similar things so very much.

Here's some happy news. Joe's brother is visiting for the weekend. It is a short visit, but so good for both of them! Also, two of Joe's uncles and an aunt are visiting. That has been a real treat.

~~~~~~
Thank you Evonne, Thomas, & Leah for the card!
Thank you Dr. & Mrs. Borst for the postcard! It was so fun to hear about your travels.

6 weeks

Joe has now been in the hospital for 6 weeks. His previous stay, separated from this one by one blissful week, was 5 and a half weeks. We are so ready for Joe to be booted. Being on T-7 for so long is really rough. You see too much sadness when you are on a floor like this for an extended period.

Joe is hanging tough, but causing all kinds of trouble as usual. We were REALLY hoping this would be the week Joe got kicked out. Unfortunately, yesterday morning, Joe got a fever. It wasn't too high, but concerning since Joe had been afebrile for two weeks. By afternoon the fever was gone and Joe was feeling much better. Then evening came. Joe was so tired, he slept like a baby. A midnight check showed the he had another fever, 102.7. By this morning it was 103.3. So frustrating! Well, we discovered the cause is some type of infection. Cultures drawn yesterday were positive for two kinds of growth. In the next day or two the doctors will be able to determine what that growth is exactly and target it. Obviously the broad spectrum of drugs Joe is on now isn't working for what appeared. The other thing is that if Joe's line is shown to be infected, it'll be pulled.

Joe's bone marrow biospy results are still rolling in. So far we know that the chemo did what it was supposed to do by knocking everything down. Joe's marrow went from being 100% cellular to 5% cellular. The question yet to be answered is what all is in that 5%, and what will appear as Joe's marrow begins to recover.

Apologies if this entry doesn't make a lot of sense. My brain currently feels like it is on Mars. I've been joking with Joe that when he gets medications, I can feel it!

Thank you for continued support and prayers.

For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently.
~Romans 8:24-25

bmbx #11

Joe survived his 11th bone marrow biopsy. It was done by a senior fellow, and it seems he did quite a good job. At some point next week, we'll get the results. Obviously we're praying for REMISSION.

Joe continues to be doing well. He has been breathing on room air for almost three days now. Still no fevers. And the pain has been under control. Joe is antsy to go home. The doctors haven't been very open about when this might be a possibility. We're hoping for the beginning of next week. We shall see.

I went home a couple days ago. I have a story of course. I'm starting to believe that Joe causes trouble on purpose, just so that I have something interesting to blog. Joe was walking around with his IV pole (Khemo Von Oelhoffen. Remember?) Khemo gained a LOT of weight a couple months ago. He'd gotten rather top heavy. On Wednesday, while I was home, Joe was walking around the room with Khemo. Wouldn't you know, Khemo lost his balance and tumbled over. Fortunately, he tumbled onto a big chair in the corner, Joe did not go tumbling after, and Joe's line stayed intact. Joe just got a tiny blood spot on one of his fingers. Khemo...his heads is a bit crooked now. Khemo has also lost some weight since his incident. He looks pretty good. There's always a story, eh?

That's it for today. Thanks for the continued prayers!

~~~~~
Thank you Shelley for the card. :)
Thank you Louison & Ping for the fun video. Joe hasn't been able to see it yet, but he will!

1000 Cranes!

In a true act of love, patience, and dedication, my dear cousin Peichen folded 1000 paper cranes as a "good luck," "dreams come true," "get well soon" gift for Joe. How cool is that? The photo doesn't do the cranes justice. It is absolutely amazing! Thank you Peichen! It is beautiful, and the heart behind it is so very touching.

Today, Joe is doing really well. Everything felt better today, so that is a huge praise. We just keep praying for more days like this and a biopsy result that shows that Joe is in remission.

Happy Taiwanese Father's Day (Ba Ba) to all the daddies out there!

~~~~~

Congratulations to Kitty & Anthony on their new baby boy.

Thank you to:
Lauren & Eric,
Gretchen,
Jocelyn & Peter,
Min-Hsiung & Chu-Yuen Hu
Auntie & Uncle Teh

for the cards. You put smiles on our faces!

Thank you:
Joanna
Uncle & Auntie
Pei-chen

for your sweet and encouraging messages. You really touched us.

Thank you IR Linda for the very appropriate gift. You are so cool!
~~~~~
I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.
~Romans 8:18

Done with chemo.

Joe's finished up his induction chemo on Saturday afternoon. He hasn't experienced any fevers since chemo started, which has been wonderful.

On Friday evening, Joe got yelled at. I went to take a shower. As usual, I gave Joe my string of lovingly nagging instructions (i have my cell phone, call the nurse if you need anything, behave yourself, etc., etc., etc.) Despite all of this, Joe thought that it would be a good idea to go brush his teeth while I was gone. This would have been all fine and dandy...if Joe hadn't just received morphine for pain. He ended up getting a little woozy and fell. Fortunately, Joe only has a few bruises on his arm to show for it, but because he "kinda grazed his head" and had low platelet counts, the dumbhead (i say that with all the love in the world) was sent down for a head CT (just in case.) It made for quite an eventful evening. The CT came back negative, and Joe earned a blue bracelet (granted to patients who are a fall risk.) I think that everyone knew it was a one time deal though, because Joe didn't get the bright yellow magnet outside of his door, or a special colored dot by his name on the patient board. Joe has apologized profusely since the incident.

On Saturday morning, Joe had a chest CT done. None of us really thought about it much. All of the other scans were so unexpectedly ugly. Well, not this time. For the first time, Joe's chest scan showed significant improvement. WOOHOOOOOO!!!!! We were thrilled with this news. Joe's breathing has been significantly better as well. He still needs oxygen, but not around the clock.

Since the chemo ended, Joe has been experiencing bouts of nausea. It generally happens around mealtimes. Joe will feel hungry, but as soon as he starts eating he gets nauseated and loses his appetite. Could this have to do with the hospital food? Maybe. Joe is eating - just not a whole lot.

Joe is still experiencing pain. It is the one thing that isn't getting too much better. Joe has all kinds of pain meds that he can request. The doctors have told him not to worry about becoming an addict. They won't let that happen. And getting some relief from pain is far better than writhing in pain. Some parts of the day are ok...other parts of the day are super miserable. So pray for no pain!

On Friday, Joe will be getting bone marrow biopsy #11. We are so hopeful that the results will show that Joe is in remission. Clinically, Joe has shown such improvement we have all the more reason to be hopeful. Joe tentatively has an appointment in Minnesota at the end of August. The results of this next bone marrow will give us more answers as to what the next few months will look like.

Lots of stuff is happening! As always, we appreciate the continued love and prayers so very much.

I have some thank yous...but I forgot my list, so I'll post those another time.

Day 5 & 6

Joe seems to be doing a bit better each day. Since the chemo started, Joe has had no fevers. Starting yesterday, Joe felt that his breathing was much better. Before, Joe would get winded just standing up. Today, Joe felt comfortable enough to take off his oxygen when going to the restroom. Considering all that he is going through, Joe is doing quite well. We are hoping and praying that this continues and Joe is able to leave the hospital for a bit in the near future.

In other news, Joe and I have jumped on the Harry Potter bandwagon. We're reading through book seven together. Joe reads a few chapters, and then I read a few chapters when Joe is in Benadryl heaven. It's been fun.

~~~~~
A.M. & A.D, thank you so much for the card. You have been so faithful in your support. :)

Day 2 & 3 (and the start of Day 4!)

Often our blog entries are watered down versions of our day. Not everything needs to be on public display. But try to imagine all the different challenges that are generally associated with men who are 93. At 33, Joe is experiencing so many of those challenges, and it's not easy. It is already difficult to watch someone who has lived a full life suffer all of those indignities...to witness Joe experiencing those challenges at a time when he should be on top of the world is just so hard. There is comfort in knowing that all of this is temporary and Joe has the strength and will-power to get past all of this "stuff." Oh, but it is still so hard. Joe is an amazing guy though. On Day 2 of chemo he was feeling so drained. The chemo seemed to really hit him, and Joe had little energy, little appetite, and everything just felt so frustrating. Yet at the end of the day when we were winding down, I just casually asked, "Do you have any closing thoughts for the day?" Joe responded by telling me all of the things that he was grateful for and everything that made the day a blessing to him. I couldn't believe that after such a difficult day, Joe was still able to be so genuine in counting his blessings. Such an incredible man he is.

Yesterday was a much better day. Joe was able to eat a bit more. His breathing was better. His mood was better. And, he finished his final dose of daunorubicin (the cherry kool-aid!) Today begins day four of the Ara-C. Overall, Joe is tolerating the chemo very well. He is more tired, and has less of an appetite, but there has been no nausea. Most of the things that make each day difficult are the things that Joe was experiencing before the chemo started. The doctors are trying to address each of those issues the best they can. The fact of the matter is, Joe is really good at challenging everyone!

That's it for now. Thank you for your continued prayers!
~~~~~
Louis - thank you so much for the card!!!!! It was a really nice surprise. You are in our thoughts and prayers.

Day 1 of Induction Chemo.

So far so good. Joe did really well today. Yesterday, we were all a bit concerned because Joe's breathing was really labored for much of the day. This morning, the chemotherapy was started. The cytarabine comes in a huge bag and runs for 24 hours. The daunorubicin runs over 15 minutes and looks like cherry Kool-Aid! Joe's breathing was actually much better today. After turning up his oxygen to 4L yesterday, we were able to bring it back down to 2L today. Big praise. Another big praise is that Joe had relatively few interruptions in the afternoon, so he was able to catch up on a lot of much needed sleep.

On a sadder note, this afternoon a dear man who was on the floor passed away. We had befriended his family, and are heartbroken for them. The wife was such a sweetheart. With all that she was going through she took our family under her wing and would surprise us with chocolates or fresh grown zucchini. The children were all wonderful as well, and always took the time to ask about Joe. Please keep the family in your prayers. The couple was married for 53 years. Such a beautiful family.

Slight change of plans.

There has been a slight change of plans. This morning, we learned that two out of four cultures drawn from Joe's PICC line yesterday were positive for gram-positive cocci. Joe was getting that line pulled today anyway, so that part was okay. Joe was sent down to Interventional Radiology and got his fancy new triple lumen. The folks in IR took really good care of Joe. How could they not, right? As far as the chemo, that is being put on hold until Saturday so that everyone can be sure that there is no more bacteria.

That is the super quick summary. If you know anything about hospitals...particularly teaching hospitals, you know that the day didn't go that smoothly. But I figured I'd be nice and spare everyone the boring details! The important thing is that IR rocks. :)

To be honest, last night when we learned that Joe would be getting induction chemo today, it seemed sudden - and yet we felt a sense of relief. After all, these past few months we've been doing so much waiting and seeing. We knew that the induction chemo was coming sooner or later. It was almost like a burden was lifted to know that something was finally happening. I think we're all at least a little nervous - mostly because of Joe's lungs - but we do feel that the right decision has been made for right now.

Now it seems we have to do just a little bit more waiting. Just when we were all geared up and prepared. Just a little bit though.

p.s. miraculously, i've discovered that we can view all blogger blogs again. i don't know if this is temporary or permanent. but while we can, we'll play some catch up. :)

~~~~~
Thank you A.M. & A.D. and my Mommy for the cards!

And I totally forgot the other day. Thank you, thank you, thank you to Alice, Crystal, Jomei, Lei, & Sha for stopping by and bringing us all the yummy goodies. It was great to see your smiling faces, and great to enjoy the yummy goodies!

Update.

We talked to the doctors this afternoon. The preliminary results of the biopsy showed 8% blasts, which didn't end up being as good as it sounds. Joe's marrow appeared to have a lot of abnormalities, and so another special test was done that is more specific and accurate. The doctors were able to get these results by the end of the work day. The computer (?) showed that Joe's marrow had 10-20% blasts. A manual count gave a result of 27% blasts. Either way, the doctors thought that there were enough cells that were dysplastic/abnormal to warrant starting induction chemo right away. The other issue is that while Joe's neutrophils appeared to be climbing gradually, a closer inspection showed that the neutrophils aren't normal. Therefore, the neutrophils likely aren't doing what they are supposed to be doing, which is help fight infection.

Tomorrow morning, Joe will be trading in his PICC line (in his arm), and going back to the ever-so-lovely triple lumens (neck area.) Oh how we loved the PICC line. It was good to Joe.

At some point tomorrow, after getting his new line, Joe will be started on a "7+3" regimen. Joe will be receiving cytarabine (Ara-C) for seven days. Apparently, it is given continuously throughout the seven days. During the first three days, Joe will also be getting daunorubicin. Recovery takes a month. During this month, Joe's doctors will be working hard to pave the road to Minnesota. We are hoping and praying that this induction chemo brings Joe to remission. We are also praying that somehow, some way, Joe's lungs get better. With God all things are possible & nothing is impossible. So, that seems to be a reasonable request.

Tomorrow is a big day! Thank you for all of the continued love and support.
~~~~~
Congratulations to Pastor Jim & Kathy on being brand new grandparents!!!!!!
~~~~~
So I say to you: Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened.
~Luke 11:9-10

#10

On Monday, Joe had bone marrow biopsy #10. (Amy W., we hear that you're getting #10 pretty soon too. And so the competition continues!) Since Joe had the biopsy as an in-patient, he had the privileges of getting all morphined up. The plan is that if the marrow shows less than 20% blasts, Joe will likely get another round of Dacogen/Decitabine. If the marrow shows greater than 20% blasts then Joe will be started on induction chemo. The induction chemo is a 7-10 regimen that has the intent of bringing Joe back to remission. There are several chemo "cocktails" that can be given - some more aggressive than others. All of them are pretty powerful though, and the recovery period is generally one month.

By this morning at 8am the doctors were supposed to have some preliminary results. They were also planning on taking thoses results and having a meeting about what's next. We haven't heard anything yet.

Joe's breathing has been pretty stable for the past few days. He is still on 2L of oxygen, but episodes of being really short of breath seem to be decreasing in number and duration. Joe is still experiencing fevers as well. None of them are too high, and they are all manageable.

The toughie these past few days is that Joe has been experiencing a lot of pain from things that aren't necessarily directly related to his disease. When Joe isn't feeling physical pain it is not so hard to stay positive and look at the greater picture. But when Joe is feeling physical pain. That's really difficult to deal with. It just seems so unfair that with everything Joe is already experiencing that extra torture has to be thrown in there to make things even more difficult. Well, there is no denying that Joe is a tough guy. He will get past this hurdle, just as he's passed so may others.

~~~~~~
I wait for the Lord, my soul waits, and in his word I put my hope.
~Psalm 130:5

The adventures of J.L.

Tuesday evening, I went home for the night. I was confident that Joe was doing really well and happy to give him some alone time. I love spending time with Joe so that I can help him with various little things and so that we can encourage each other in this journey of ours. But I do make sure to disappear for at least a little bit each day so that Joe can have some time to himself - without someone breathing down his neck. :) Every few days I will either go home for the greater part of the day, or go home for the night. I always joke around with Joe that these are the days that he decides to cause trouble. Tuesday night, Joe did not disappoint. When I left, he was smiling and content. Turns out he had a miserable evening of fevers. The fevers were not quite as bad as in the past, but it was enough to ensure that Joe got very little sleep. Such a trouble maker.

By Wednesday morning, Joe's temps were much better. He was experiencing bone pain from getting Neupogen though. The doctors suspected that the fevers were probably from the Neupogen as well. After all, Joe hadn't spiked a fever for a week. Joe had been getting Neupogen approximately every three days, but this week he had two in a row. That seemed to be a good explanation for the fevers.

Another event on Wednesday was that Ms. Joanne decided to check up on Joe via the blog from a West Penn computer, only to discover that the hospital system had blocked it. More specifically, all blog sites were blocked because they are considered "personal & social." Ms. Joanne contacted Ms. Lilly about this woeful event. Ms. Lilly promptly contacted Mr. Mike the computer dude. By Friday, Mr. Mike the computer dude with a big heart made sure that the folks at West Penn could once again keep up with Joe's blog. (Thank you, thank you, and thank you!!!!!) Joe's blog is the single exception though, so we can no longer keep up with our other blog buddies from this hospital. But we do know that Ann and Christine both had super duper amazing praise God kinda weeks in their journey. Yay!

Early Thursday morning Joe had a Chest CT scan. The results showed that Joe's lungs looked pretty much the same. Perhaps there was *slight* improvement on one side and *slight* worsening on the other, but overall things looked the same.

All week, Joe continued to experience shortness of breath and intermittent fevers. Sometimes Joe could go hours without oxygen, sometimes not. Joe averaged about 1-2L with the nasal cannula.

This morning was pretty scary. Joe started feeling some pain on the right side of his chest. It was near the site of his CT guided biopsy, so Joe assumed it was some lingering pain. Unfortunately, as the morning progressed Joe began to feel pain on both sides of his chest. After being given some meds for the pain, Joe decided to try and "sleep it off." After a bit Joe seemed to feel better. He went to the bathroom and then decided to try sitting up, rather than returning to bed. Suddenly, Joe had a really difficult time catching his breath and the pain seemed to be unbearable. Joe's oxygen was turned up to 6L., he was given a breathing treatment, and a portable chest x-ray and chest CT were ordered. Soon after all the craziness, Joe started to feel much better. By afternoon, Joe's oxygen was gradually decreased back down to 2L. Right now, Joe is feeling pretty well. We're still not sure what happened? The doctors were worried about a pulmonary embolism which is actually possible even with low platelet counts. There was no sign of that. Praise the Lord. The odd thing is that the CT scan seemed to be much uglier that it was just two days ago. It is hard to figure out what could cause such a change in just two days. Everyone is hoping that it is just more fluid overload, because that is a relatively easy fix. In the meantime, everyone continues to keep a close watch on all things related to Joe's lungs.

And so we continue to pray for healing in Joe's lungs even as we continue to pray for complete healing for Joe.

If you haven't already, go read Jim & Jesse's most recent blog. It is their last on-trail entry. These guys are so incredible. We couldn't be more thankful for their energy, determination, heart...and even insanity. You can even watch videos from their trek. Follow the link or search for "marrowtrek" on youtube.com. Jim & Jesse's craziness in the name of charity is really mind-boggling. Keep them in your prayers!

Speaking of which...thank you everyone for being so faithful in your prayers, good vibes, and thoughts for Joe. Hugs for everyone!
~~~~~
Thank you Michael, December, & Ian for the card!!!!! It was a sweet surprise.
~~~~~
Those who sow in tears will reap with songs of joy. He who goes out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with him
~Psalm 126:5-6

hello!

It feels like it's been a long time since I've posted photos. So here are a few...

This was Joe, heading off for his CT guided biopsy this past Thursday.

Joe has been on and off of oxygen. Each new day, he's on it a little less and off of it a little more. Because of Joe's low WBC, he has been wary about walking out in the hallways too much - even with a mask. Joe's current room is quite big though. So for exercise, Joe paces the room, and maneuvers an extra long oxygen tube. Kinda like a puppy leashed to a tree!

Joe posin' with a bottle of Red Ribbon Cherry Supreme!

Things are going relatively smoothly. It seems that the Decitabine that Joe was given is working better than expected. Joe has had a couple low-grade fevers recently - but they have been low enough to be considered non-fevers. Another exciting thing is that the amount of blasts (immature white blood cells) in Joe's peripheral blood is decreasing. Something is definitely working! Joe will be getting yet another bone marrow biopsy soon (#10, if you're counting!). The results may influence the next step in Joe's treatment. If a large decrease in blasts is found in the marrow, then the doctors just might give Joe another round of Decitabine to give the lungs some extra time to get better. If the blast count remains unaffected, then induction chemo will likely begin soon.

As for Joe's lung biopsy, we were supposed to get the final FINAL results today. We didn't get the official final results yet though. What we were told is what we've been told...everything has come back negative. The only sign of anything has been some hemorrhaging (quite possibly from the biopsy itself) and some chronic inflammation. This doesn't explain why Joe still experiences episodes of shortness of breath or why he still experiences fluid buildup in his lungs. We'll just keep on praying.

Here's a fun story about Red Ribbon Cherry Supreme. On Friday, Pastor Jim stopped by to visit us in the hospital. You can always count on talking about everything under the sun when you're with Pastor Jim. Somehow, we started talking about stuff on TV, and how one of the local stations, WQED will often have these specials about Pittsburgh. During Joe's last admission, we watched one of these specials and learned about a local bottling company that makes this famous cherry soda (er...pop) the old-fashioned way. We found it weird that we had never heard of this drink that was supposed to be local. When we asked Pastor Jim about it, he had never heard of it either. Well, wouldn't you know...Monday morning we heard a knock on the door. In the mornings, between the doctors, nurses, dietary, and pharmacy, someone is coming in or out every five minutes. We were so shocked to see Pastor Jim appear! He looked like he was smuggling in bottles of beer. Turns out, Pastor Jim looked up Red Ribbon Cherry, and his lovely wife called the company (which is in Natrona) to find out where they sell their products. It seems they sell a lot of cases through beer distributers? But Pastor Jim & Kathy were able to find a local place that sold individual bottles. FUN!!!!!! Joe and I have had the privilege of trying the famous cherry soda and the root beer (We prefer the root beer!). Joe will also be trying the "Mint Julep." According to a lady at the bottling company, their mint julep has calmed the tummies of people on chemotherapy! Who knows?

~~~~~
Thank you Pastor Jim & Kathy for hunting down the Natrona bottling company!!!!! It was such a fun surprise. Pastor Jim - thank you for scaring my socks off. I had no idea the bottle opener would start spewing out Steelers stuff! I thought that the television was haunted. :) Joe thinks the opener is so cool.

Thank you to our parents for always taking such good care of us. We love you!!!!!!

Still smilin'!

Joe is still in the hospital and he's still smiling! His biopsy site caused him some pain at times last night (yay for pain killers!), but today it was much better. The preliminary results so far show some inflammatory cells (not surprising) and no sign of fungus. Not sure at this point if that is a good thing or a bad thing. (Do we want them to find something so they know how to treat it? Or do we want them to find nothing...and still be confused?) Before the biopsy, several doctors were pretty sure that what Joe had was some kind of weird fungal infection. We'll see what the rest of the results show when they come back. In any case, the doctors feel that several good samples were taken during the biopsy. It seems pretty certain right now that even if everything comes back negative, Joe will not be getting a VATS. The surgeons aren't fond of the idea because they feel the risks may outweight the benefits. None of the family is fond of the idea of a VATS, so we're definitely siding with the surgeons. Heal, lungs! Heal!

Joe's breathing varies. Parts of the day he'll feel fine, even without oxygen. At other times Joe definitely requires oxygen. The doctors definitely don't want to send him home while he's dependent on oxygen, so Joe will be sticking around here through the weekend. It's only been nine days so far...BUT, Joe was only supposed to be admitted for three days. Yeah right. At least he has the "VIP" room!

Joe still has a healthy appetite. He is still CMV negative. And he is still an A+ wonderful husband!
~~~~~
Thank you Pastor Jim for stopping by for a visit! We always love chatting with you.
Thank you LihJen for the yummy squash!!!!!
Thank you Brian & Talmage for stopping by!

Biopsy.

Joe is such an enigma. As you know, I recently wrote about Joe feeling better than ever. Wouldn't you know, a CT scan yesterday morning showed that Joe's lungs were looking a bit worse! So the doctors finally said, "no more waiting. We're getting a biopsy." There is a CT guided biopsy and a Video assisted thoracic surgery (VATS.) The CT guided is definitely the lesser of the two evils. The VATS is really invasive and recovery can be rough. It was decided to go for the CT guided.

Joe just came out from his biopsy about an hour and a half ago. He felt pretty well. Joe wasn't allowed to eat until the procedure. The procedure was pushed back from this morning to the afternoon. The doctors wanted to make sure Joe's platelet count was high enough before moving forward. Joe had two transfusions in the morning, and one during the procedure. After Joe got back he was STARVING. He ate a big sandwich (with meat!), a banana, and a cookie...and enjoyed it. This is huge because Joe's appetite hasn't been quite normal, and anything with meat or seafood has been very unappetizing. So yay for a returning appetite.

Pray that Joe continues to do well. And pray that the doctors are able to learn something from the results of the biopsy. The yield for the CT guided isn't always high...and so the possibility of a VATS still looms there in the shadows. Obviously, we'd like to avoid that.

Thanks for the continued prayers! And thank you to the lovely person who sent Joe a card.
~~~~~
WEST PENN BLOOD DRIVE
Typing for National Marrow Donor Registry also available.
(Open to all employees and hospital guests)
Allegheny and Liberty Rooms (off the cafeteria)

Friday, July 13, 2007, 7:00am-3:00pm

Update.

Joe looked and felt so much better today than yesterday. One big perk was that he hasn't experienced any fevers since yesterday afternoon. The funny thing is that since Joe had a normal temperature the whole day, he was much more attuned to the temperature of the room. The thermostat in the room is super sensitive...and I'm pretty sure it lies about the temperature. I generally just leave it alone and keep a jacket handy. But of course I wanted Joe to be as comfortable as possible. Unfortunately, the thermostat only does "tropical" and "arctic." Honestly. There is this little turny thing on the bottom. Half a millimeter in one direction made the room super toasty (better to imagine Fiji, perhaps?). Half a millimenter in the other direction made the room quite cold. Joe did acknowledge that he should probably be thankful for the cold considering it was in the 90s outside.

Just to bore you even more with the details of the thermostat...the "turny thing" claimed that the temperature of the room would be 70. (half a millimeter in either direction is pretty much all seventy.) The thingy on top (yes, I realize I'm very technical) that shows what the actual temperature is kept reading between 78 and 80. Lying thermostat. :P

Joe's breathing was significantly better today. There was less coughing, and Joe only required one liter of oxygen. (Yesterday, he needed four.) Late in the evening, Joe felt a little bit more shortness of breath. He'll be getting some Lasix since it worked so well yesterday.

So overall it was a great day. Joe was even CMV negative. THANK YOU for all the prayers. Keep them up, because they are working!

About Joe's hospital stay.

Joe's hospital stay has been a lot of ups and downs and rehashing the same old debate over his lungs. Our biggest prayer right now is that Joe's lungs miraculously clear up, because they continue to create mass confusion amongst the doctors. Nobody really knows what it going on in there. The debate continues. Is it a fungal infection? Is it a type of pneumonia? Is it disease related? Over the weekend, Joe's breathing started to get worse. Just standing would cause shortness of breath. Joe started getting oxygen again for sleeping. Then yesterday he started using it a bit more during the day. A dose of Lasix last night (for fluid overload) made Joe's breathing feel better...but his oxygen levels remained low.

This morning Joe felt completely miserable. He woke up with a fever, which ended up going up to 103.3. Breathing was difficult, so Joe's oxygen was bumped up a bit. And this nagging cough that Joe has had seemed to be even worse. Needless to say, we were all pretty anxious this morning. Each doctor that came in pretty much said, "yeah, you look & sound worse. We have no idea what it is. We're hesitant to biopsy...but it still might need to happen." Joe's meds have been shuffled a bit, and Joe was given another dose of Lasix.

As of right now, it seems that Joe's setback this weekend may just be from a fluid overload. Because this afternoon Joe looks and feels so much better. He looks like a different person from the dude I saw this morning! We just keep praying for healing in his lungs. A chest x-ray was taken this morning. So far we just know it showed some excess fluid.

Joe finished his last dose of decitabine this morning. Despite all that I've just mentioned, Joe was able to tolerate the chemo quite well. There were a couple instances of mild nausea, and that's about it. Now we sit and wait for at least a week to see how things are going. Joe's doctors would love to start Joe on heavy dose chemo to get him into remission (the decitabine is mostly to keep things under control) - but they keep hesitating because of the whole lung issue.

As far as the CMV. The past few results have been...postive...negative...postive...negative. That CMV is just teasing us now. I don't like it.

Let's pray for Joe's lungs!!!!!! :)
Thanks everybody for caring so much. We can be quite silly & dorky. But when you're facing something so serious, silly & dorky is the way to be.
~~~~~
Happy wedding day to Melanie & Scott. Yay for 777!
Happy birthday to Lauren. Glad I was able to talk to you. :)
~~~~~
Thank you Nancy for serenading me!
Hey there Lilly P.!!!!! Thanks for letting me bother you all the time, listening to me whine and grump and vent, and sharing juicy stories! :)

About Joe's birthday.

Thank you so much to everyone who helped to make Joe's birthday week so enjoyable. Joe was so appreciative and overwhelmed by all the love and encouragement he received. Simply being out of the hospital and not getting a "hideous" rash made this year better than last year. Beyond that, it was all love, love, love. The girls in short stay saw that it was Joe's birthday and had a cute little cake sent up for him. Joe's gift from the his doctors & the radiology department was a CT scan! Far better than a rash, don't you think? We had the lovely family dinner that Joe wrote about. And Joe received so many cards, fun photos, songs to listen to, creative videos...the works. Our church congregation even sent over a video of everyone singing happy birthday to Joe. How awesome is that? So thank you, thank you, thank you for making Joe feel so loved. I have a list of thank yous. I apologize in advance if I miss anyone. Feel free to send me an angry email. :)

HUGS & KISSES for everyone! We love you. :)
~~~~~
Thank you to.....
1st Auntie & Uncle
2nd Auntie & Uncle, Iju & David, Li-Ming, Ocean
3rd Auntie & Uncle
A.M. & A.D.
Albert
Alice
Allison - allie357
Anita Martin
Ariel, Kelly, & Walker
Auntie & Uncle R.C. Lin
Auntie & Uncle Yang
Bekah
Beth & Dave
Carole & Coco
Cathy Liang
Christine - princessbaby
Christine Pechera
Cousin Cathleen
Cousin Lilly
Cousin Pei-Chen
Cousin Sandy & Osamu
Dianna
Eckel77
Emma & Mike
Evonne, Thomas, & Leah
GLA (Praying for you every single day.)
Greg
Jennifer - beaksgirl
Kenny Ung & family (The photo was so funny. Joe thinks he makes a better looking doctor!)
Kevin & Melissa
Lauren & Eric (Points for cuteness & creativity. :) )
Lena
Lily Peng
Louis
Marcus
Melissa - sigkapbride
Nancy S.
Nss
Pastor Jim
Phyllis
Rachel Ung & gang
Rune, Van, Hannah, & Noah
Sara M.
Sara - Labbattsmom
Sha
Shanna
Sheena (thanks for lunching with me & sharing those CDs!!!)
Shelley (the comic was so perfect!)
Steve, Karen, Rachel, & Nathan
Victor J. (just say "no!")
Vince & Joanna (the video was so great!)
...for your cards, emails, encouragement, and/or participation in birthday project 070307!

Thank you Auntie Chuang for the delicious home-baked cake. It was SO delicious! We loved it.
Thank you Auntie Liang for the..."ba-tsang." So tasty.
Thank you Caryn, Eric W., Vivian, & Van for sending songs that touched your hearts. Joe enjoyed listening to each of them.

Thank you Myra for the books! Joe's reading kick continues. :)
Thank you Brian & Val for stopping by to visit.

Thank you Patrick for the visit and all of the photos. They were great.
Thank you Ray (And all of your helpers!) for the photos with a twist. They are so great, and will definitely make for good conversations!

Thank you PCC PE congregation, the 7th & 8th grade Sunday school class, Abbey, Rachel Ung & the rest of the Ung gang for the very awesome surprise!!!!!! The videos were just the sweetest things. So, so, cool. And Joe is loving the other added goodies too!

No more cryin' there.

Sweet Baby Livi went home to be with the Lord on July 6, 2007 at 2:45pm. In her short time here on earth, God used that little girl to touch so many hearts. The impact Baby Livi had will surely continue to reveal itself for a long time to come.
Please continue to lift her family up in prayer.

Back in the slammer.

Before you do anything, please, please take the time to lift sweet Baby Livi and her family up in prayer. They could really use it. Thank you.
~~~~~
As planned, Joe is back in the hospital in room T-713. It is a large spacious room, so everyone was joking that Joe has the VIP room and is being treated like a king. Meanwhile, Joe is doing an incredibly good job breaking in the new residents and fellows. Bless their hearts. They are sweet but such obvious newbies. Everything has taken so much longer than necessary. We arrived yesterday morning, and pretty much nothing was done for over 6 hours. It was really quite silly...and frustrating. But as they say, "never get admitted to a teaching hospital in July." My husband is so sweet that he got admitted two July's in a row.

Joe had a rough night with ongoing fevers. By late morning his fevers were better. Joe started his chemo around 2pm, so he is about halfway through his first dose. Each dose runs for three hours.

I'll try to keep everyone updated. I'm sure there is more to share, but I'm not feeling very wordy right now. Imagine that. Thank you to everyone for all of the encouragement and prayers. We appreciate it so much.

~~~~
Christine celebrated her 1 year BMT birthday yesterday. HAPPY BIRTHDAY!!!!!! Nancy, who was Christine's hospital neighbor is about a year and a month out and is at 100% engraftment. Yippeeeeee!

Happy belated birthday to Julie O. and Eric S.!!!!!

And a Happy 1 month birthday to Ocean!

Happy July 4th

Happy fourth of July everyone! I hope you are all out having fun with picnics and spending time with family and friends. Thank you all for helping to make my birthday a million times more enjoyable than my birthday last year. It's good to be reminded how old you are getting. Thank you so much for the well-wishes, cards, e-cards, personal song selections, homemade cakes, and gifts. Yesterday, I had to go to medical short stay to get bloodwork and I needed another platelet transfusion (no real news there). I also got yet another CT scan of my chest since my breathing has not really gotten much better or worse. Fortunately, the scan showed no significant changes. That evening, our families got to enjoy an evening together without talk about cancer (but of course, when our families get together, there's always some talk of cancer). To give Karen a reprieve from cooking, both moms cooked 2-3 Taiwanese dishes each and we had a blast with all the great home cooking. It was nice to just be in each other's company outside of the hospital setting. And to top everything, Karen baked a delicious double layer cake in my favorite Steelers colors.

So here's the lowdown on the 411 on Operation Opening a Can of Whup-Ass on Cancer (OOCW-AC). I was quite appalled to find out that the highly recommended militiamen that I hired to protect the princess donor cells and to decimate the cancer cells ended up just not being up to the task. Initially, these militiamen were vigilant and focused on their jobs. They thought it was a piece of cake. But as time passed, they started kicking up their feet, watching European football nonstop, and getting bloated on corn chips. Part of the reason why was that all the princess donor cells looked like Angelina Jolie (you'll like the reference dad: why again?) in those Tomb Raider costumes. So militia guys figure: "You don't want to mess with these girls! They can take care of themselves. Hey, move your head, I can't see the TV." Well, that was the beginning of the end folks. Cancer cells got wise to all this and employed a series of ambush guerrilla warfare tactics to take control of the entity called Joe. We don't know where Angelina Jolie is and it is assumed she is MIA or KIA. Her whereabouts are unknown.

Now, obviously, I don't really appreciate cancer cells being all up in my bidniz. They have free run of the joint right now, eating all my food, reprogramming my DVR, tipping over my rare Sumatran centerpieces... Hence, the Elite Special Forces have been employed and these guys are good. They're going to be led by a miniaturized Special Agent Jack Bauer who has signed on for the job. Jack tends to be a rogue, but he promises to lead this special task force to victory. As we speak, the ESF are infiltrating the entity call Joe and will be awaiting specific attack orders. These are shoot to kill orders. If necessary, heavy arterilly, fighter jets, and gunships are ready to be deployed, but we are not underestimating the ability of Jack Bauer and his men.

(Side note: ever notice how if Jack Bauer is teamed up with local police or FBI or something that all the police and FBI guys are dressed in full body armor and helmet with eye shield, but Jack not only does not put on a helmet, but often he'll pull off his flak jacket and leave it on the floor. He should at least where goggles or something.)

Okay, for those of you who thought the last 2 1/2 paragraphs were too technical or I am showing signs of mental illness, it is clearly obvious the first bone marrow transplant failed. All of the doctors at West Penn had a big discussion (also taking into consideration Cleveland's suggestions for treatment). Our doctors here are in consensus that treating me with a high dose chemotherapy right now would be too toxic. Since something has to be done to keep the disease in check, I will be receiving "lighter" inpatient chemotherapy with an agent called decitabine. It's given every 8 hours over 3 days (9 doses) and I'm told it's pretty well tolerated. I still will need to have the stronger induction chemotherapy at some point, but this will at least buy more time for my lungs to heal or for the lesions in the lungs to further declare themselves. I'm being admitted again to the hospital tomorrow (Thursday) for a "tune-up" day because I'll need both blood and platelet transfusions. I'll start the chemo on Friday. Please pray that we made the right decision!

God's love,
Joe

Happy Birthday, Joe!!!