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.