Pleas for prayers please!

Hey,

It's me again. I guess I tend to blog in spurts but this one is mostly therapeutic for me. God works in mysterious ways, and He apparently thinks I need more challenge. And this may be the biggest challenge so far. My preliminary bone marrow biopsy results seem to show that my disease is one aggressive bastard mofo (30-40% blasts for those who this means anything) which transforms my disease from MDS to AML. This has me pissed. I am now sending out the Elite Special Forces Marines, you know, the ones that are psychotic and born that way! I am soon to be facing some high dose chemotherapy to get back into remission, but there is concern about the ever present CMV issue (which popped up positive again) and the state of my lungs. It would be great if the findings present on my chest CT scans would just go away because no one can guarantee that there isn't some brewing infection there. Everyone is curious to biopsy the lungs but any invasive procedure can be extremely dangerous for me at this point and may jeopardize my chance for a second transplant. I think I need the chemotherapy pretty soon, so please pray that all my doctors, me, and my family make the right decisions because timing is everything on this one.

On the bright side, the doctor I was hooked up with in Cleveland has turned out to be so wonderful and has been working above and beyond the call of duty, and I now have another experienced BMT doc on my team. Unfortunately for some, when the time comes, it looks like my second transplant will not be in Cleveland (Janet & Frank and Maria, I have to call you sometime. We were so excited to have you guys nearby.) I am being referred to the best of the best in umbilical cord blood transplants, which happens to be the U. of Minnesota, so that's where we plan to go.

Update on my bone marrow biopsy #9: I did receive sedation (Ativan and Demerol), and although it was the best biopsy experience I've had so far, it's been one of the sorest (is that a word?) after the biopsy. I guess there's a price for everything. I didn't grovel enough to take home that doggie bag... New environment... Threw me off my game... And Amy, if you are out there reading this, I am now neck and neck with you, but this is one race I'd gladly lose!

It is good to finally be an outpatient again, even if it's probably only for a couple of days. The plan is for me to go to medical short stay to get labwork and platelet transfusions until a decision is made on when to start chemo. I'll tell you... sleeping in your own bed with your wife next to you is like nothing else!

One final thing... I HAD to go to the driver's license center today to get my photo taken and get my license renewed. My license expires on Tuesday and I didn't want the hassle of dealing with an expired one. Fortunately, there is a center very close to our house, so Karen drove me there this afternoon. As we walk in there, a hundred other people apparently had the same idea, but we're thinking I had to get this done even though I'm taking a bit of a risk. Fortunately, the center is pretty spacious and it didn't end up taking too long. The funny thing is... the center looked like the UN. Seeing how Allison Park (where we live) is like 98.7% Caucasian (of course, I am exaggerating), we didn't know where all these people came from! There were all sorts of people in there, but I think I ended up being the most curious UN member. I was dressed normally, but having a surgical mask on gave me alien status. I was sitting in the back, and when they called my number, I walked confidently to the front desk with my mask on and I saw a hundred pair of inquisitive eyes! And this happened twice because I got my picture taken the first time and waited to pick up my card the second. A lot of people must have thought "TB!" because of that guy recently, or if they remembered far enough back, they might have thought "Asian guy! Bird flu!". So I tried to cough as much as possible throughout the whole process. Just kidding! That is no laughing matter kids. Under no circemstances should anyone accept those above mentioned serious diseases as payment for anything.

OK, I'm out. In all seriousness, please pray for Karen and me and our families about these upcoming days. I'd like to stick around to provide you with corny jokes and excruciating long self-deprecating blogs once every 3 months.

God's love,
Joe

What a day...

We are back from Cleveland. Joe was discharged from the hospital last night; a few days later than anticipated. Joe was still spiking fevers several times a day, and each day the spikes seemed to be a bit higher. However, there was no way that Joe was going to miss this trip to Cleveland. So last night, Joe made it back to home sweet home!

This morning, Joe's parents arrived on our doorstep at 6:45am. We were joking around that it felt like Joe just finished five and a half weeks of summer camp, and then we were heading off for a family vacation! Or maybe a field trip.

Traveling to Cleveland went smoothly. We arrived a bit early, and Joe was kept busy filling out pages and pages of forms. When we were called into the office, Joe had a little label slapped on his shoulder. It really made it seem like Joe was a kid on a field trip...except these days, name tags are usually slapped on the back of a kid, i think.

The meeting definitely did not go as planned. But we don't believe that this is a bad thing. After much discussion, it was decided that Cleveland may not be the best place for Joe to receive treatment after all. I'd rather not go into detail here, but by the end of the meeting everyone agreed that it would be in Joe's best interest to go to...Minnesota (anyone have any connections up there?). The University of Minnesota Cancer Center is internationally recognized for its work with umbilical cord transplants. The doctor we met with today and Joe's doctor in Pittsburgh will be working together to ensure Joe is able to get a transplant in Minnesota. It is true, going to Minnesota will take Joe and I way far out of our comfort zone. But hey, we've always wanted to see what Minnesota is like. Now's our big chance. Besides...I hear they have a pretty big mall up there. :) So that is the big news.

Now for some good news. First of all, Joe had lots of blood drawn and bone marrow biopsy #9 today to get the ball rolling on what's to come. Joe would like to appoint the doctor we met today his designated bone marrow biopsy person. Apparently this guy did an AMAZING job. Pretty impressive in light of Joe's recent Q and A! The other even better news is that Joe already has several good options for the cord blood transplant. So we don't need to worry about finding a match.

The not so good news is that Joe's bone marrow biopsy showed that his disease has progressed from MDS to AML M6. We're okay with this though. It isn't shocking news, and actually, it doesn't change Joe's treatment plan. If anything, the treatment plan is confirmed by this news.

As of now, Joe will be going into short stay for blood draws and possible transfusions through the weekend. Sometime very soon, as soon as this coming week, Joe will be started on chemotherapy - in Pittsburgh. Those lovely nurses T-7 will bee seeing us sooner than expected. The chemo will be an intense regimen that will hopefully bring Joe into some form of remission. I believe the regimen will be ten days. Recovery will be about a month. During this time, preparations will be made for Joe to get a transplant in Minnesota. The doctors are thinking that transplant will take place in 2-3 months.

Amazingly enough, after all he's been through, Joe seemed to have the most energy of all of us today. Not only that, but Joe made it through the day fever free! It seems he just needed to get out of the hospital for a bit. Being home has definitely been wonderful for Joe. You can bet he is taking full advantage of all the perks of home while he can.

We had a lot to absorb today, but a lot to be thankful for too. The doctor we met with in Cleveland was so kind and so helpful. We made it home before 5pm, and not long after that the doctor called and already had results for Joe. Yeah, Joe isn't being treated in Cleveland anymore, but we really felt that the doctor had Joe's best interest in mind. We are so grateful for that.

This evening, Joe and I were discussing this past year. Interestingly enough, the deeper we get into this craziness, the more apparent it is to us that God's hand is in all of this. It may not seem like it from the outside. But from where we are, it couldn't be more clear. That is pretty awesome.

~~~~~~~~~~~~
Thank you Auntie & Uncle Hwang for the card. It was so cute!
Thank you Baird family for the gift. Joe is really excited about it.
Thank you Eric W. for bringing us goodies, and for all of the photos! It was nice spending some time with you too.

BMBx, Part 2

From the desk of Dr. Joseph Lin
~~~~~~~~
Hey folks,

It’s me again! Can you believe that I’ve been in the hospital for 5 ½ weeks?! It’s also crazy that it’s been a little over a year since I was diagnosed. Time has both gone by so slow and yet so fast.

I’ve been trying to just keep busy, so I still do lots of reading and watching TV and a lot of conversation with Karen, family, and friends. Recently, I read a fun book called “Why Do Men Have Nipples”, which answers silly medical questions you’d be embarrassed to ask your doctor (thanks Vince!), Blink by Malcolm Gladwell, which was thought provoking but I’m not sure I fully buy into. And of course, I’ve been reading the Bible. I’m almost through the Book of Job. We finished watching the first season box set of 24, which was excellent.

Lately, I’ve been calling myself in Taiwanese what to you guys sounds kinda like “luong bey pie,” which translates into “unbreakable”. I’m telling you, I’m a tank, man. Knock me down and I get back up. It’s really comforting to know that I personally do not have to worry. I leave it to the doctors and ultimately lift all the burdens to God. Of course, I still get disappointed with bad news, but in a strange way, I’ve never been more calm about everything. I’m just watching God’s plan play out. Every day that I wake up in the morning and see Karen curled up in the semi-reclining hospital chair (which she claims is comfortable) and I see her in deep coma-like sleep with mouth wide open and eyes half open, I smile. Means I’m here another day.

Right now, I’m basically in a big holding pattern until my appointment in Cleveland this Friday at my alma mater. It’s quite interesting that two of the institutions where I trained and worked are the two I am now counting on to save my life. Not sure what it means… We are very excited about the prospect that an umbilical cord transplant may finally be the answer.

While I wait, my breathing has returned to almost normal and I take a lot of walks around the unit. I would not recommend getting pulmonary hemorrhage. If you’re that couple and one of you is convinced “But, honey, it really sounds like a good deal.” Politely decline. The same applies to retinal hemorrhage, which I also had. There’s still residual blurriness in my left eye but it is oh so gradually getting better. It’s mind blowing to know that I am more or less being kept alive right now by other people’s blood products, since my bone marrow doesn’t seem to be making much of anything right now. I require platelet transfusions just about every day and red blood cell transfusions about every 1 ½ weeks or so. I also get Neupogen injections about every 3 days to rev up my white blood cells. So anyway, the Cleveland appointment is of utmost importance because we are going to decide on a treatment path from there.

Now, you noticed the title of this blog is BMBx, Part 2. Since it’s been many moons since I’ve talked about this and I face the prospect of bone marrow biopsy #9 in Cleveland, I thought I’d take the opportunity to further educate you about this most useful and most primitive tool of Hematology-Oncology in question and answer format.

Q: What is a bone marrow biopsy?
A: It’s best not to know.

Q: How is it done?
A: Scientifically speaking, they jam a huge needle into your lower back side and extract a little bit of life out of you.

Q: Should I have a bone marrow biopsy?
A: The answer from the society of Hematology-Oncology doc’s is an emphatic yes. My advice: do not engage a Heme-Onc doc in casual conversation because the next response will always be “Hmm… sounds like a bone marrow (in their lingo it’s always “bone marrow” and not “bone marrow biopsy”) is in order here." So if I were you, I’d avoid the “bone marrow” like the plague.

Q: Does this procedure hurt?
A: The word “hurt” is not recognized in the medical community. The more appropriate term is excruciating pain. And in this case, yes. I would beg and plead with your doctor to give you a near overdose of morphine, which not only relieves your pain but also makes you think you are on Mars. If you’re really persistent (but in a nice yet semi-groveling way), he/she may even send you home with a doggie bag of morphine (good stuff…)

Q: Is this a sterile procedure?
A: Of course, but for some reason, the practitioner of the biopsy always dons this outfit that has a striking resemblance to Darth Vader. (Alternatively, this could be the morphine).

Q: Will I be scarred for life physically and/or mentally?
A: Yes and Yes

Q: Is it appropriate to scream or shriek prior to/during/after the procedure?
A: Feel free to do it as much as you want. But you will have to be willing to have a large stamp in your permanent medical record that says “TOTAL WUSS”… on the front of the chart next to your name.

Q: Is it true that movie directors, producers, etc are often seen in the BMT (bone marrow transplant) offices?
A: Yes, good way to get autographs. I now have Ron Howard’s and Martin Scorsese’s. They are venturing into the horror genre and want me to pass along upcoming working titles called Stick the Eye, BMBx, and Patch Adams 2.

Well, I hope that helps you out. I just took a little splash of morphine from my secret stash, so I think I’m going to take a little nap.

Joseph
~~~~~
Thank you Gretchen, Lauren, & Nancy B. for the cards. Joe cherishes each one he receives.

Thank you Vince for stopping by for a visit. It was so wonderful to see you after so long. Thank you also for being so sly and leaving behind the fun gift and super sweet and hearfelt letter.

Thank you to the PCC 5th & 6th graders for the super awesome card. It is at home right now, and will greet Joe once he gets out of the hospital. I know he'll love it.

HAPPY HAPPY BIRTHDAY to Lisa B. :)

1 year

Joe continues to amaze me each and every day. His strength is incredible...Today marks one year since we started this battle with MDS. One year. I still remember the tears, the fear, the shock. Just one day earlier we were enjoying a wonderful and "normal" life. We were so sure that Joe's blood tests would come back normal, we would heave a sigh of relief and move on with our lives. The following week we visited with the doctor, we sought a second opinion, we cried ourselves to sleep.

Now it has been a whole year. In some ways it seems impossible that it has only been a year. In other ways, it seems impossible that it has already been a year. Now we are at a new beginning. Not exactly the new beginning we were hoping for at this point. But it is still a new beginning. Joe and I know that we are stronger, more hopeful, and more optimistic than last year. Joe says his body is a tank (he was actually more specific, but I don't know anything about tanks...i do know that he upgraded himself from a hummer.) Indestructible. Yeah, he has a few dents. Yeah, he seems to keep losing his sense of direction. But those are all things that can be fixed. God is good. Really and truly. To witness how far Joe has come mentally, spiritually, & emotionally in the past year has been a truly beautiful thing. But to quote a saying my dad often says, "You ain't seen nothin' yet!"


We received some hopeful news yesterday. IF the doctors can figure out all of Joe's meds (taking some away, switching some to oral, reducing IVs...) Joe just might be discharged at the beginning of the week. We would still have to come back to Short Stay all the time...but Joe would be able to sleep in his own bed straight through the night. How wonderful would that be?


If you haven't already seen it, Jim and Jesse posted a new blog about their Marrow Trek. Those two are so amazing. Not only that, but they have officially more than doubled their goal of raising $5/mile. I also have to say that Jesse probably has the best fiancee ever. Really. She is an angel.
~~~~~~

Praise You in this Storm

It is Friday again. Joe has now been in the hospital for almost five weeks. Each day, Joe feels just a little bit better. But Joe is still pretty much transfusion dependent. The doctors lowered Joe's platelet trigger from 50 to 30 since he doesn't seem to be having any more problems with bleeding. Still, today Joe will be receiving his 36th platelet transfusion since the day he was admitted. Platelet transfusions always means lots of Benadryl, which means lots of drowsiness.

On Tuesday we learned that after FIVE CMV negative results, Joe was once again CMV positive. We were hopeful that the CMV would go back to being negative soon. Joe was getting Gancyclovir and a half dose of Foscarnet for much of the time he was negative. Then the Gancyclovir was taken away, and Joe was kept on the half dose of Foscarnet for maintenance. Now, The Gancyclovir has been started once again. That may have done the trick. Just in case Monday's draw was a fluke, another draw was taken on Tuesday. It came back negative. Staying Negative!!!!!!

Yesterday Joe had another CT scan of his chest. Joe or one of his many radiology pals should be explaining it, not me. But as I understand it, the scan looked a little bit better this time. It's still not very pretty though. The debate this week was whether or not to perform a VATS (video-assisted thorocoscopic surgery) procedure on Joe. We were all praying that this would not be necessary because it is invasive, and obviously not very fun at all! The concern was that the procedure might do more harm than good. The doctors who would be performing the surgery were mostly all leaning towards not doing it, since Joe is showing clinical improvement each day. After yesterday, the consensus remains to wait. Joe also spoke with one of the doctors in Cleveland. That doctor said that if possible, it would be best to wait so that Joe would be well enough to make his appointment on Friday and get the ball rolling over in Cleveland. An additional concern in regards to the VATS is that the area that would be biopsied seems to have shifted to an area that is not ideal. So if some type of biopsy is needed, VATS probably wouldn't be the procedure of choice anymore.

Joe is no longer requiring extra oxygen. So no more nasal cannula or pet oxygen tank, even while sleeping (for four nights now!). That is a praise.

This week, Joe and I have had the pleasure of meeting several families on our floor. It is a funny feeling. It has been so wonderful to meet others and to be able to encourage one another. Then we wish that the meetings weren't under such circumstances. And then we realize that if we all hadn't ended up on the 7th Floor of West Penn, we probably never would have met, or become friends. It has been really wonderful to see how going through something so difficult makes people and families so strong. It is additional encouragement for each new day. We meet people who have been battling longer than Joe and feel inspired by their determination to continue fighting. We meet people who are just beginning their battles, and we are amazed by how far we have come in the past year. Our prayer each day is that we can continue to encourage others as we have been encouraged.

I feel like I'm being so long-winded today. I just want to end with lyrics to a song. My friend Caryn passed them along to us. Joe and I were excited to discover that we actually own the song. It is our current theme song...

Casting Crowns: Praise You in this Storm

I was sure by now

That You would have reached down

And wiped our tears away

Stepped in and saved the day

But once again, I say "Amen"

and it's still raining

As the thunder rolls

I barely hear

You whisper through the rain

"I'm with you"

And as Your mercy falls

I raise my hands and praise the God

Who gives and takes away

Chorus: I'll praise You in this storm

And I will lift my hands

For you are who you are

No matter where I am

Every tear I've cried

You hold in Your hand

You never left my side

And though my heart is torn

I will praise you in this storm

I remember when

I stumbled in the wind

You heard my cry

You raised me up again

My strength is almost gone

How can I carry on

If I can't find You

Chorus

I lift my eyes unto the hills

Where does my help come from?

My help comes from the Lord

The Maker of Heaven and Earth

Repeat

Chorus

~~~~~~~

Thank you April & Paul for the card. We appreciate your continuous support!

Thank you Auntie & Uncle Liang for the really yummy cake. It is one of our favorite kinds!

Thank you Pastor Jim for your visit. I know that Joe really cherished that time with you.

Thank you Mike & Julia for the card and photo. Your support means so much to us.

Thank you Gordon & Julie for stopping by and bringing food. It is always great to see your smiling faces.

Cleveland Rocks!

A Happy Belated Father's Day to all the daddies out there. Joe and I have been blessed with two of the greatest dads ever. They are both amazingly smart. Smart enough even to be categorized as geniuses (our Indiana dad will at times even proclaim himself "a little bit of a genius!"). Also smart enough that the general public isn't quite sure what they are talking about half of the time. ;) More importantly, both of our dads are super lovable (did you know that you can spell that as 'lovable' or 'loveable?' I'm not sure, which is more official...). Growing up, everyone who met my dad would say, "Your dad is so funny, I just love him." Then I met Joe and everyone who meets my Monroeville dad says, "Your dad is so sweet, I just love him." Well, look at their smiles. What's not to love? :)

Joe continues to do as well as can be. He still requires oxygen when he sleeps. But Joe feels his breathing is getting better and better. At the end of last week, Joe had a CT scan that wasn't all that attractive. Once again, the doctors started throwing around possibilities like fungal infection and BOOP. That led to discussions about performing another bronchoscopy, or doing a CT guided biopsy or VATS. None of these procedures sounded very enticing at all. After Joe's meds were tweaked, it was agreed that all the doctors would continue to observe Joe over the weekend. If he showed clinical improvement, then any type of procedure could be postponed or canceled. Joe did in fact show improvement, so for now, no procedure.

Joe will still have a temperature here and there, but in the past couple days, Joe's temp. has not been much over 100. So there seems to be improvement there.

Now for the big picture. It is all very interesting. When Joe was first diagnosed, almost a year ago, a couple articles were published in some Chinese newspapers. After reading about Joe, a doctor in Cleveland contacted Joe asking if an umbilical cord transplant was considered. It had been considered briefly, but at the time it was decided that if Joe could get an adult donor who was a super close or perfect match, that would be better. A year later, Joe's first transplant doesn't seem to be cooperating, and no perfect adult donor has been found. Because of this, umbilical cord transplant seems to be a good idea. Several hospitals were mentioned, but interestingly enough, one of the pioneers of umbilical cord transplants in adults is right next door in Ohio. Not only that, but she works with the doctor who contacted us a year ago...AND, they both work at the University Hospitals of Cleveland. Why is this so interesting? Because Joe went to medical school at Case School of Medicine (I guess it is no longer cool to say 'Case Western Reserve University) and did his intern year at University Hospitals of Cleveland. (Yes, I've discussed with Joe that to be a great doctor doesn't mean he necessarily has to be a patient at each hospital he has worked.)

In any case, Joe has an appointment as an outpatient in Cleveland on June 29. Joe will get all kinds of tests and pokes and prods (yup, that means another bone marrow biopsy!) to see if he meets certain basic requirements, and then be sent home. Joe's case will be presented before a panel of doctors, and then they will decided whether or not to accept Joe as a patient.

Our prayer for this week is that Joe continues to get better each day (particularly his lungs) so that he is well enough to make this appointment in Cleveland. We are also praying that if Cleveland is where Joe is meant to be for treatment, those doors would be flung wide open so there is no question. If that is not where Joe is meant to be, then we pray that that is clear as well.

So dear friends in Cleveland, be prepared because we may be knocking on your door soon! (Lucky you!)

~~~~~~~

Thank you Lauren, Eric, and Mookie for more fun facts!!!!! We love them.

Thank you Jen, Joe, and Gabe for the sweet card. We loved all the updates.

Thank you Susan for the letter and all the photos with explanations. We are going through them slowly, because it is more fun that way. It is really neat to see so many familiar faces!!!!

Thank you Lilly P. for the card and for always greeting me with a big smile!!!!!!!!! You rock. :)

~~~~~~~

Lots of birthdays and anniversaries lately, and I remember some of them at least. :)

Happy happy birthday to

Ashlee, Patrick (pbc), and Gordon!

Happy happy 10th anniversary to Lilly and Vic. Woohooooo!!!!!

Happy happy anniversary to Sandy & Eric

And happy happy super belated anniversary to Myra & Sheru, and Brian & Monica.

It's important to be silly every now and then.

****Edited with 'Thank yous'*** *

Our exciting news for this week is that Joe received his fourth CMV negative result. He is on a roll!!!! And this blog is going to continue 'Staying negative' as long as necessary.

Joe feels pretty great today. He says that if it weren't for the fact that his insides are causing all kinds of trouble, he'd feel like a pretty normal guy. Joe now only requires oxygen when he is sleeping. During the day, and during our walks around the unit he no longer needs it, which is wonderful!

Joe still experiences fevers. Usually they occur in the morning. So far, no sources of infection have been found, and so the most likely cause seems to be the disease process itself. But because Joe keeps experiencing fevers, there are all kinds of doctors that float in and out of the room all day to give their expert opinion. And because it is a teaching hospital, there are that many more doctors - because residents and fellows have to take a turn too! There really is no such thing as privacy in a hospital.

As far as the 'big picture' goes. We're still in a bit of a holding pattern. Joe's doctors are consulting with other doctors, and everything is definite...and yet not really definite yet. But it is looking very likely that Joe and I will be relocating for a bit. When exactly this will happen, and for how long is still all up in the air. But if you're lucky, we could be moving to YOUR city. :) If by some miracle, Joe is able to find a PERFECT (not almost perfect, but PERFECT) match super soon, then we'll be staying put for transplant #2. If this perfect match does not happen, then Joe will be getting an umbilical cord transplant. If Joe gets an umbilical cord transplant, everyone agrees that it should be done at a hospital with a lot of experience. Once all the doctors have finished their discussion, I'll share more. For now, it's more fun to be mysterious!

This second transplant thing is pretty scary to say the least. But Joe and I have had long discussions and prayers. We're human, so I can't say that we are not scared at all, ever. I can say that we feel a lot of peace. We're also seeing quite clearly that God's Hand is in all of this. It's really quite amazing.

~~~~~
Thank you to
Lauren, Eric, and Mookie (we loved the entertaining facts!)
3rd Auntie & Uncle (Joe is looking forward to the day when he can finally meet you!)
for the sweet e-cards!!!!!!!

Thank you to Auntie & Uncle Tzeng for stopping by (Sorry I missed you!) and the dried cherries. Joe had a wonderful time chatting with you.

Thank you Caryn, because you sent that gift package that keeps on giving! It's fun when we realize we've hit one of the dates!

Thank you 99th Auntie for always being so entertaining. We are praying for your family all the time.

The moment you've all been waiting for...

Today, I have a real treat for all of our faithful readers. You're gonna love this. It's a post by none other, than Joe himself! Be prepared to laugh, cry, and be inspired. If you haven't already figured out that he is an amazing fellow...or if you forgot a little bit because it has been a while since his last amazing post, prepare yourself!
~~~~~
Yo.

I know it's been an extremely long time since I last blogged, so I know this must come much anticipated (at least by this guy in the Ukraine who keeps pestering me.) Well, work has been kinda busy lately. I think I bit off a little more than I can chew by trying to tackle the doctor stuff and cancer. I think I've been pulling something like a hundred straight all-nighters.

The truth is I don't have internet access in my jail cell, I mean, hospital room, so I'm transcribing this for Karen to enter into the blog. The past few weeks/months have been quite a roller coaster ride for us all. I have to admit that it was devastating to hear the news that this transplant has failed and I will be starting again from scratch. I don't think the news really hit home for me until I got admitted again into the hospital. But rest assured that all is well with my soul.

With all the books and movies that I've read and watched this past year, people have asked me why there seems to be a fair share of "depressing" material in there. I've recently read books like a long way gone: Memoirs of a Boy Soldier, and A Thousand Splendid Suns and watched movies like Blood Diamond, Babel, and Happy Feet. What I've realized is that there is so much suffering of every kind in this world that I actually feel blessed to be where I am today. All of these stories have provided me inspiration and impressed upon me human beings' indomitable will to survive. There are people out there who literally have nothing or close to nothing, and I have the freakin' Verizon network behind me (reference to a previous blog.) I was telling Karen that in some countries (Fiji?) I might be considered a king with my automatic reclining bed, TV with DVD, books, endless food supply... We live in a country which has become so bloated, rich, and incredibly spoiled that there is 24 hour CNN coverage of Paris Hilton (really, what's up with that?!) and we whine when service is not fast enough or the water "tastes funny." I think we should wake up every morning thanking God for all the blessings he has given us.

Enough of my rantings...I wanted to thank everyone again for all of your support and prayers. Keep them coming! It's also been so nice to be able to visit with and talk to people. That really lifts my spirits. I've also been inspired to hear the stories of Alivia, Ann, Christine, Nancy, Erica, and Amy (see sidebar links) who are undergoing their own battles with leukemia. You guys keep me going as well. Several of you have commented on our blog, and I thank you so much for your words of encouragement.

Did you know that there is actually such a thing as "Chemo brain?" I heard it mentioned on the nightly news so it must be true, right?! Anyways, I leave you with a funny story. With fevers and being so drugged up all the time, I often forget things that I've said or things that have happened. This is especially true of the first week I was hospitalized. Apparently, late one night, I told Karen I was employing "Kung Fu Move #2-1-3" and I asked her when she wanted me to bust out the other moves. Then, I apparently put my hand on her forehead and blessed her with "Tai Chi Serenity Four Blossom Shade." Hmm, let's see...interpreting chest x-rays and CT scans may not be my forte right now!

Anyway, just wanted you all to know that I continue to slowly improve every day. I've already been in the hospital for three weeks and I have no idea how long I'm still going to be here, but I'm made from pretty hardy stock. For now I bid you adieu. And what the heck...I'll also bless all of you with Tai Chi Serenity Four Blossom Shade, but only if you use it for purposes of good.

Joe
~~~~~
Thank you to Sharon Feng
Ming-Chen, Bill, & Evan for the e-cards!

Thank you to the Revival Life Group for the card you sent.

Thank you Auntie & Uncle Yang for coming to visit us. We always love seeing you. :)

Thank you Auntie Emily, Uncle Tom, Ruby, and Stephen for the really wonderful gift. It is really amazing that you read Joe's mind, because your gift was something that he was just talking about yesterday morning!

Thank you Uncle Joe Tan for your really wonderful gift. You probably don't know this, but Joe secretly would love to be a cowboy, so the gift was perfect.

New Post!

I realized that I haven't posted for much of the week. (I've also been gently reminded by a few people that I haven't posted in almost a week!) I guess we've just been having too much fun. Albert has been in town, which has been wonderful for all of us. He left for Boston today, and it was sad to see him leave. It was just really wonderful for Joe to spend some time with his brother.

The main excitement for this week is that this morning, Joe received his THIRD CMV negative result. Yup, that's right. Joe has been CMV negative three times in a row. This being negative stuff is really working right now!

Early in the week, a whole bunch of Joe's medications were discontinued. His IV pole looked so bare. However, each day more drugs have been added for this reason or that reason. A lot of it is precautionary. Joe continues to spike fevers and continues to be on oxygen. Because Joe's immune system isn't up to par it is this constant debate with the doctors. Overload Joe with drugs to prevent/treat all kinds of possible ailments, or take away the drugs at the risk of having some evil infection appear and cause trouble? Do certain tests that may possibly cause more damage than good, or play the guessing game? Each day you learn more and more what an inexact science medicine can be. It can be really frustrating. I know that Joe is in good hands, both in the medical sense and the spiritual sense. But until the day that Joe is MDS-free, our days will be filled with lots of back and forth "stuff" which is tiring.

Although Joe is still using oxygen, he is not as dependent on it. Joe is able to be off of it for an hour or two at a time. The only time now that Joe definitely has to stay on the oxygen is while he is sleeping. This is a good sign. Recently there has also been a great debate over Joe's lungs. All of the doctors in various fields have different thoughts. Some are convinced Joe had CMV pneumonia that was caught early. Some feel that is highly unlikely. Some feel that Joe is definitely getting better and healing, others feel that Joe needs to be treated for infections that might possibly be lurking. Okay, now I'm basically repeating what I just said in the previous paragraph!

More confusion. Joe has a rash that has been flaring and fading throughout each day. It is really strange, because initially it looked like the GVHD was returning. Now, it is starting to look different. Joe may get a skin biopsy to see if the cause can be pinpointed. Maybe it is a drug reaction? It is especially strange, because we learned yesterday that Joe's graft is even worse off than we initially thought. The 35% graft result was very preliminary. We had that information the day after Joe's bone marrow biopsy. Now we are hearing that Joe had practically no donor cells. More in the area of 1%? By now, this news is neither good nor bad. Although the main focus of Joe's treatment this past few weeks has been the CMV and Joe's lungs, it has been made more and more clear that a second transplant is pretty inevitable. Joe will likely be given induction chemo after his lungs get even better, and that would pretty much eliminate all of the donor cells anyway.

There we have it. Some good news. Some bad news. Some neutral news. We just continue doing what we have been doing. We're taking each day one at a time and giving everything up to God. Thank you everyone for continued prayers and love.

~~~~~~
A very, very HAPPY BIRTHDAY to Joe's mom. She has been such an angel. Moms are really great to have around. :)

Congratulations to my cousin I-ju & David - proud new parents of a baby boy! We can't wait to see pictures. (hint, hint.)

Congratulations to Ariel and David who are graduating from radiology residency!
~~~~~~
I only have part of my thank yous for today, because I don't have my handy-dandy notebook with me. :) I'll have to do the rest another time.

Thank you Albert for hanging out with us all week, watching movies, and sharing stories. You are a great little brother!

Thank you Pei-chen for the really cool Steelers keys. What a cool surprise!

Thank you Alex and Lauren for the cards you made for Joe. The two of you are real artists!!!! We have the cards hanging in Joe's room, and they really brighten his day.

Thank you Nancy for the wonderful serenade. :)

Thank you Alivia for the really cute card, and sharing your extensive vocabulary with us. It really made us smile.
Thank you 2nd Auntie for the card, and congratulations on being a grandma!!!!!!
Thank you Auntie Mary and Uncle Ming for the card. We really appreciate your love and encouragement.

Doing well.

Joe seems to be getting a bit better each day as far as his lungs and breathing are concerned. We've been able to take walks around the unit, pushing around Joe's pet oxygen tank. Joe's is requiring less and less oxygen each day. Yesterday, he turned it down himself, telling the respiratory therapist, "I put myself on 2 liters today..." The therapist couldn't stop laughing at Joe. Tomorrow Joe will get another test for CMV. This next week we will probably learn more details regarding chemotherapy to treat the MDS now that everything else seems to be getting better. Joe's IV pole now looks pretty bare! All the antibiotics have been taken away, and a final anti-fungal med will probably be discontinued today. Joe is pretty much only getting maintenace treatment for the CMV, which better stay negative! Yesterday was nice, because Joe avoided getting any transfusions. Today, he gets more platelets. Speaking of which, on Friday, Joe received two platelet transfusions. Joe gets pre-medicated with 75mg of Benadryl rather than the normal 25mg, because he had a reaction once in the past. Since the 75 mg makes Joe pretty woozy, and he hasn't had any reactions lately, Joe figured taking 50 mg would be good enough. Nope. Joe ended up spiking a fever, getting a bit of a rash, and having his blood pressure drop. Oooops. All is well now, but obviously Joe will be sticking with the 75 mg now!

Last night we had the best treat. Joe's brother is in town for a bit! Albert was able to get some time off to come home after explaining the situation with Joe to his attendings and peers. Yay! It'll be great for Joe to have his brother around.

That's it for now.

Thank you so much to 99th Auntie (gla) and Ed & Mei Hwang for the e-cards.
Thank you Phyllis Miller for the snail mail to the hospital! It was so nice to see a photo of the beautiful family who has been praying for us for so long. Thank you!

HAPPY HAPPY HAPPY BIRTHDAY to my 2nd Auntie and A-kim (Aunt) in Taiwan. Thank you also for so faithfully loving us and praying for us.

Happy wedding day to Jeannette and Anthony. I'm sure it was beautiful!

And YAY for the UNGcredibles! :)

Sometimes, staying negative is a good thing.

On Wednesday evening, we learned that Joe's CMV was still positive. But that result was from a blood draw taken early Monday morning. Today we got results from a blood draw done yesterday. It was a big fat NEGATIVE. Finally. Praise the Lord! I do think that maybe I've been too positive. Maybe all this extreme positivity made that silly CMV way too comfortable. So from now on...at least for awhile...as a bit of an experiment, my motto will be "staying negative." Yay for negativity!!!!!!!!

Joe is doing as well as can be. His oxygen has been decreased to 3 liters, from 6 liters. Joe's antibiotics are being discontinued one by one. All of Joe's cultures are coming back negative, which is a good thing. Yay for negativity, right? Also, CMV pneumonia has been ruled out, since Joe has been showing improvement each day. If it were pneumonia, he'd likely get worse before getting better. This morning, Joe felt well enough to walk a few laps around the block, which is the 7th floor. Today Joe received platelet transfusion #13 since being admitted. We've been able to avoid blood tansfusions for a couple days though. Yay for that! Joe's WBC and neutrophils aren't so hot, so I think that we're going to start getting strict and discourage visitors. We did have a few visitors this week, which really, really brightened up Joe's spirits. However, at this point, we're back to protecting Joe from any potential infections.

We had a little chat with Joe's doctor this week about "the big picture." Meaning, what's next? The first step was to take care of the CMV, which as of today is finally negative. The second step is to allow Joe's lungs to heal. That is already seen to be happening. After that is chemotherapy. Options are still being discussed. In the course of our discussion, we learned that this next year could potentially be even more challenging than we first expected. However, I've decided I'm not going to share all the details of the discussion here, unless it ends up becoming more of a reality. Each day Joe and I are learning that worrying doesn't tend to solve any problems. None of us knows what tomorrow holds. It could be a miracle. It could be another challenge. The best we can do is deal with each miracle and challenge as it happens. I think Joe and I are prepared for any challenges we may continue to face. But we are not going to expect the worst. That just seems to be a depressing and unhealthy way to approach things. Having hope is a much lovelier option.

I must say, that Joe amazes me every single day. He has been through so very much, and continues to go through so much. Yet each night, as we talk and pray I am blown away by the compassion Joe has for others facing all kinds of challenges. When we pray, I truly feel that "peace that transcends all understanding." I believe with my whole heart that whether it takes a week, a year, or even 10 years, that Joe will be completely cured of stupid old MDS. (okay, okay, this might sound like it contradicts what i just said about not knowing what tomorrow holds...but in my mind, it makes sense.) God is using Joe in a mighty way to touch hearts and lives right now, but I believe that even more is in store. For both of us.

Thank you to these wonderful people for sending cards!!!!!
99th Auntie (we received all three from yesterday! :) praying for you.)
Alyssa, Ryan, and Charlotte
A.M. & A.D
Anonymous
Anonymous, the riddler (I think I know who you are. If I'm right, Joe was off by a mile! [csw?]
The Baird Family
Ellen Tabor
Hsinn-Hung & Janet
Hung-Chi, Shiow-Jian & the Ho Family
Pastor Jim, Kathy, & Angela
Kendra & CF
The Lais
Lake, Mandy, Andrew & Christopher (We received the snail mail card too!)
Mike & Julia
Nancy Sakakura
Osamu & Yi-Shan
Sheena (from Belize!)
Sue-mei

Thank you Shelley, Janet, & Frank for your visit. Even though we have a rule of beating people up when they cause tears, we loved seeing you. Janet & Frank, thank you also for the gift card. Joe will surely put it to good use.

Thank you Pastor Jim & LihJen for stopping by. Joe really cherished that time. And thank you LihJen for all of the yummy and wonderful food!

Thank you Caryn, and Caryn's parents Mabel & Ron for the really awesome and amazing care package you put together for us. I've only opened the "undated" items with my name written on them so far. But wow, I'm really touched by your love and thoughtfulness. The shawl is just the most beautiful and soft hug ever.

a bit more of an update.

This morning, while Joe was catching up on some extra sleep, I left the room to brush my teeth. When I returned, Joe was awake with an extremely concerned look on his face. I looked up and Joe's father had a similar expression on his face. I braced myself, because I thought surely I was about to receive news about Joe's condition that I did not want to hear.

Let's go back in time a few minutes. Joe wakes up and discovers that I have disappeared (I didn't want to wake him.) Shortly after, his father stops by for a visit...and then a Pulmonary doctor (fellow) shows up to check on Joe. They go through what is now a normal daily routine check. However, before the doctor leaves the room, he suddenly says, "I have some bad news for you." So you can imagine, Joe and his father were bracing themselves because they thought surely they were about to receive some news about Joe's condition that they did not want to hear.

Instead, they were told (and then, when I returned, I was told) that hospital security had discovered that someone had broken into my car. Now, you can imagine how each of us, when given this bit of information, did a kind of simultaneous sigh of relief and "grrrrr...we don't need this right now!"

The blessings are of course that the bad news was about the car, and not about Joe. Also, nothing appeared to be stolen (although if someone had to go and smash in my window, I almost wish they had taken something. That would at least make a little sense.) And finally, my insurance will cover the damage and my window will be fixed on Thursday. Oh, and of course the final blessing is that it is summer, not winter...so I was able to avoid duct taping a garbage bag over my window. The drama never ends.

Now, about Joe. On Friday morning, Joe woke up feeling a little short of breath. Joe also noticed a blurred spot in his vision from his left eye. A CT scan from the previous day showed some faint nodules and ground glass opacities in Joe's lungs. The possibilities for this seemed endless...fungus, cmv, pneumonia, bleeding, etc. Joe was started on oxygen through a nasal cannula. Joe was also given a bronchoscopy. The last time Joe needed a bronchoscopy was a nightmare, because Joe ended up with a cough that lasted six weeks. Obviously, none of us were excited that he needed another one, but we also wanted to make sure that anything serious could be determined and treated. The actual bronchoscopy didn't end up being too bad. What was discovered was a lot of blood in the lungs. This sounded scary, but if the blood was "simply" from hemorrhaging and not from some type of evil infection, then it could be considered a "best case scenario." The treatment involved large doses of Solu-medrol and increased platelets. In the meantime, Joe was also (and still is) being treated for a possible (though seemingly unlikely) fungal infection, the possibility of CMV pneumonia, CMV itself, and some other nasty infections. I've never seen such a fancy and packed IV pole. The photo really doesn't capture that craziness. As for the eye, Joe showed signs of hemmorhaging in his eyes. This will resolve on its own, unless it is found to be CMV related. So far, it does not seem to be CMV related. Praise the Lord. If it is, Joe will get medicine injected into his eyes.

By Friday evening, Joe's breathing was really labored. He was breathing around 52 breaths per minute. Normal, is 12-20 breaths per minute. Joe was switched to an oxygen mask which would deliver more oxygen. Joe also started getting chills, which was treated with a mini-shot of Demerol. It was a really crazy time. Crazy enough that the ICU doctor was sent up and we were forced to discuss things like intubation, just in case.

Things calmed down for a bit. Then Joe started having trouble breathing again in the late evening. A chest x-ray showed that Joe was overloaded with fluid. His lungs were so wheezy. Joe was given two separate doses of Lasix. (Joe says the name is because it "lasts six hours.") The Lasix helped Joe get rid of the excess fluid, which helped his breathing. The drawback was NO SLEEP. Joe had to go to the bathroom every 15 minutes. This would be torture for anyone. But imagine being short of breath, and being attached to a crowded IV pole, oxygen, and a pulse oximeter. It was like an obstacle course.

Fortunately, by Saturday Joe was feeling better, although his sides were sore from breathing so hard. He was switched back to the nasal cannula. Joe is still using it now. Each day since Friday has been a slight improvement. Joe was feeling pretty dejected on Friday and Saturday. He was sick of the hospital, sick or being sick, sick of a lot of things. But his spirits have improved since Friday as well. Obviously, Joe still isn't having fun, but he'll crack some jokes here and there, and then I know that all will be okay.

Today is supposed to be the day that the CMV results come back. When I left the hospital this afternoon, the results weren't back yet. Hopefully, oh hopefully, the result is a big fat negative!

That is the main stuff we've been going through. Joe has had about 9 platelet transfusions and 8 units of blood since last Monday. The good news is that each transfusion seems to make a little bit more of a difference and bump up Joe's counts just a little bit more than the previous transfusion. Also, Joe's WBC was higher today that it has been in weeks. We are still praying each day for a a full recovery. It will happen. It is just a matter of timing.

Hopefully, my update wasn't too confusing. There is just too much jumbled in my brain. It is hard unjumble and make it digestible :)
~~~~~~~~

So we have a million people to thank...
Thank you to everyone who has been continuously praying for us and loving us. So many people told us that they were praying for us last night, and that was really wonderful. Thank you so much.

Thank you to our parents for being the most wonderful parents.

Thank you to James Miller and S & T Bank for the sweet letter and donation to Marrow Trek in memory of Bob Duggan. What a beautiful gesture and loving tribute.

Thank you to Jim & Jesse for continuing the Marrow Trek. (There's a new blog update everyone!) You are such an inspiration. We are so blessed by your friendship and willingness to do all that you can to make a difference!

Thank you Myra for all of your calls, and visits, and book recommendations! You rock.
Thank you Sha, Patrick, and Ray for visiting and cheering up the room with balloons & giggles! Thank you also, Sha for the CD!
Thank you Jay for driving so far to see Joe. It always means so much to him to see you and spend time with you. Thanks also for the book!
Thank you Auntie S.B. for stopping by with the fun balloon.
Thank you to Auntie S.B., Sue-mei, and Auntie LihJen for being such prayer warriors and encouraging those around you to keep praying for Joe!
Thank you to Kitty, Neeta, David, Ariel, & Lilly for visiting Joe and making him smile.
Thank you to 2nd Auntie & 3rd Auntie for sending us hugs from Taiwan!
Thank you Nancy Baird, Caryn, Marcus, Alan & Joyce, Shelley, Cousin Lilly, Yi-Ting, 1st Auntie, Michael Chang, Albert, Eric Wu, and Victor for your phone calls!

Oh, and the cards...wow. There are still some that haven't been opened yet. We are so thankful for every single one. Joe just lights up seeing that physical evidence of love and encouragement. Joe has received love from all over the states, Canada, Taiwan, Japan, Afghanistan, and Papua New Guinea. Pretty cool.
Thank you...
Akiko
Anonymous
Anonymous
David & I-Ju
HSB (I was pretty impressed that Joe knew who you were immediately. Good radiology resident, I guess!)
Joanna
Kun-Tse
Lauren & Eric (happy happy anniversary!!!!!!!)
LihJen, PCC, & PCC Dawning Sisters
Cathy Liang
Jocelyn & Peter
Cousin Lilly
Joanne Maier
Mom & Dad
Evonne, Thomas, and Leah
Alan, Joyce, Allison, & Jason (sorry we missed seeing you when you were in town!)
Emily, James, & Alivia (We are praying for you, so much!)
Gretchen and the rest of the Allen's
A.M.
Yohko Shinozawa
Rune, Van, Hannah, and Noah
Frank & Janet
Kelly Tonkin
Sheena
Osamu, Yi-Shan, Yi-Ting, 3rd Uncle & Auntie
Mookie! (arf, arf!)
Peggy
Pei-Chen
Phyllis Miller (We got the snail mail card too! You are so sweet.)
Rachel
Roger & the SPHS AP Chem Class
Sha
TC & Yuen Chan
The Interventional Radiology Gang – Gordon, Rick Foster, Shelley, Linda, Rick Woods, Vinnie, Sue, Zahra, Nancy, & Val
Tina & John Bonney
Uncle Timothy & Auntie Grace

Also, big thank you's to Erica, Ann & Chris, and Nancy for your love and encouragement. Each of you have also been through so very much. We've never met, but we share an undeniable connection. You're in our daily prayers.

one more thing...

This is from an email sent out to the Pittsburgh Taiwanese Bible Class (and quoted in the comment below), but I think that everyone can join the fun from wherever you may be this evening at 9:00pm. (Thank you Auntie Shiow-Bih!)

Dear brothers and sisters of Pittsburgh Taiwanese Bible Class:
Please join me in praying together for Joe at 9:00 PM Monday night May 28, 2007. He really needs our prayers and support when he is struggling with oxygen, fighting for pneumonia. We will also pray for Karen, Dr/Mrs. Luke Lin and Dr/Mrs. Victor Lan at this very difficult time.
Shiow-Bih
~~~
p.s. It hasn't been confirmed for sure that Joe has pneumonia. So far it is just a possibility that he is being treated for. So please pray that it is confirmed that Joe does NOT have pneumonia.

Mini update.

It has been a rough few days. To be honest, I don't have the energy to recount all of it right now. I just wanted to say that we most definitely appreciate all the continued prayers. And after a super rough Friday, Joe is showing little baby steps of improvement each day. We rejoice in any bit of improvement we can get. We are still staying strong - which is not the same as not crying and not going through bouts of frustration. But it does mean that we are most definitely not giving up any time soon, and we know that we will get over this ridiculously humongous boulder we've encountered. After all, God is good and he has helped us over other ridiculously humongous boulders. For Him, this is nothing.

Eventually, I will share a more proper update and of course we have loads of people to thank.

Much love (keep praying!),
Karen

MDS sucks.

One of our worst fears was confirmed this evening. Results from Joe's bone marrow biopsy were back already. Joe's donor cells decreased to a mere 35%. The rest is mostly bad stuff - evil, awful MDS stuff. We were prepared for the news. But you can bet that we were hoping and praying and hoping and praying that what we heard would be the opposite of what we were prepared for.

So here is the current revised plan as I understand it. Joe's CMV takes first priority, because it can cause huge problems if left untreated. Once the doctors get one CMV negative, they will start treating Joe's MDS. It is still unclear what that treatment will entail. So far, it sounds like Joe will either be treated with Decitabine or Induction chemotherapy. The "good" news is that a second transplant, although likely, isn't as 100% as we first thought. That means there is still a ray of hope that we can cling to. Some patients, after being put back in remission following a relapse are fortunate enough to find that the donor cells suddenly come back. Wouldn't that be wonderful! It is a possibility, so that's what we're praying for now.

Send Joe some love! He could use it now more than ever. It just seems like after everything he's been through already, he's back at square one. Love him! (I know, you all already do - so very much.) Thank you. :)
Patient e-card greetings. (West Penn, Rm. T-715. )

Thank you to the Breast Center for the super awesome card. All of you are always so creative and funny. We love it!

Many thanks also to:
Caryn
Sha
Karin & Bryan
Shelley
The Miller Family
Daddy
Sylvia
Katy
Lilly P.
Deb from CT
Cousin Ben, Kristin, Alex, & Lauren (pulling out all of Ben's old tricks really worked to make us laugh!)
Gretchen
2 more "Anonymous people

for the cards! They really put a smile on Joe's face.
Joe also got two of the cutest cards decorated with crayon. We don't know who they are from (a class project maybe?), but they are SO cute. One from "A special friend" and one from Luke.

Day +134

"This ain't no thang!"
This is Joe on Morphine, Ativan, and Benadryl.













Last night, I forgot to mention that we learned that Joe is CMV positive yet again. So far, no other sources of infection have been found. It is possible that the CMV may be responsible for the fever, and maybe even all of Joe's other crazy lab reports. Time will tell. Between the Infection Diseases doctors and the Hem-Onc doctors it was decided that the Ganciclovir and the Cidofovir just aren't working. An executive decision was made to put Joe back on Foscarnet, despite the fact that it worked at the expense of a very un-fun side effect. As soon as Joe feels any indication that the un-fun side effect (for Joe's sake I'd rather not go into detail here...) is returning, changes will be made. In the meantime the doctors have done what little they can to try and prevent that un-fun side effect.

This morning Joe finally had the BIG bone marrow biopsy. Joe was given Ativan and Morphine before the biopsy which made him very calm. I think the doctor doing the procedure was far more nervous than Joe was. (Although the doctor did a good job.) Joe's platelet transfusion ended up happening after the biopsy. He is always pre-medicated with Benadryl to decrease the chance of a reaction. With that morning cocktail of Ativan, Morphine, and Benadryl, you can just imagine how lovely Joe's afternoon was! Every single time Joe blinked he would end up snoring. When something would wake him up Joe would grin a bit, occasionally utter a word or two, then resume his snoring. When Joe actually had to physically get up to go to the bathroom he would say, "I'm happy..." It was really cute.

By late morning, we learned that the platelet transfusion brought Joe's platelets up from 17 k/mcL to 19 k/mcL . Generally, the cut-off for transfusions is 10 k/mcL (on Monday, Joe's count was 6 k/mcL ...normal range is [145-445] k/mcL), but with Joe experiencing fevers and being CMV positive, the cut-off became 20 k/mcL . So Joe had yet another platelet transfusion in the afternoon.

It usually takes a few days for the results to come back from a bone marrow biopsy. Please pray that no matter what the results show that we are prepared to proceed with grace and faith.

That is about it for today. Joe was happy to see that a contestant from Monroeville, PA was on Jeopardy this evening, and he won! Interestingly enough, last week we saw a contestant on Jeopardy who was from Indiana, PA - he also won, the night that we watched. Nice to know that there are such smart people from our old stomping grounds. :)

Thank you so very much to:
A.M. & A.D
Cousin Lilly
April & Paul
Phyllis Miller
Frank & Janet
Alice
2nd Auntie & Uncle, Li-Ming, I-Ju, & David
Indiana Mom
Shiu-Bi & Jsiang-Jung Kuo
TC & Yuen Chan
Evonne, Thomas, & Leah
The Baird Family
Vince
Sara M.
Shelley
Louis
Ariel, Kelly, & Walker
and 2 "Anonymous" people

for sending cards to Joe. It really brightens his day, when he is at the hospital, to receive a pile of cards. So thank you for showering Joe with love! (p.s. Even though you fill out sender info, if the card is not signed in the message area, we don't know who it is from. We still appreciate the love though!)

Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you maye be overjoyed when his glory is revealed.
~1 Peter 4:12-13

Still here.

Not that we expected to be discharged yet. That would have been exciting though! So last night, Joe had a platelet transfusion around 3:30am and he had to tell his whole post-transplant story to the intern on call at 4:10am. Such is the life of a patient who decided to get himself admitted to the hospital in the late evening!

This morning we waited, and waited, and waited to see the doctor and for Joe to get his bone marrow biopsy. Joe didn't end up seeing the doctor until around 4pm. By that time with the pathology lab about to close shop it was decided that Joe's biopsy will take place in the morning when everyone is bright eyed and bushy tailed, following a platelet transfusion. So the big bone marrow biopsy is now tomorrow...I don't think that is going to change again.

Today Joe received all kinds of antibiotics and two units of blood. His fever went away in the afternoon, presumably from the pre-blood transfusion Tylenol. This evening Joe has a mild fever compared to last night. He is doing well for the most part. His appetite decreased a bit starting Thursday. Now that he's on a bunch of IV meds his taste buds are affected, which doesn't help the appetite. Everything tastes bitter. Fortunately everything sweet still tastes pretty good! And obviously Joe is already missing the comfort of his own bed far away from the clicking and clacking of his IV machine. Otherwise, all is as well as can be.

Thank you for your continued prayers!

Back in the hospital

This really hasn't been our day. Today was to be the day of the big bone marrow biopsy that will determine what our next year will look like. It was postponed until tomorrow because Joe's blood draw showed that despite our bit of hopeful news on Friday, all of Joe's counts had dropped. Joe had a platelet transfusion and a shot of Neulasta.

We went home and planned to return in the morning for another platelet transfusion followed by the bone marrow biopsy, and possibly a blood transfusion. Unfortunately, sometime after dinner Joe spiked a fever. You know what that means. It means he was admitted to the hospital. We just arrived about an hour ago, and Joe has been giving samples of everything to be tested. I just got kicked out of the room for a bit so that they can give Joe a chest x-ray. Joe's most recent temperature was 101.6. Joe isn't feeling so great right now. He's still being calm and positive, but the fever understandably has him feeling uncomfortable and light-headed.

Obviously, we could use everyone's continued prayers and positive vibes. Also, please pray for Baby Livi, Ann, and Amy Wilhoite. (Links to the left.) They each are having their own kind of prayer-welcoming week.

If you want to send Joe another not-so-attractive card filled with lots of love and encouragement, here is the link again...Patient e-card greetings. Joe's at West Penn, Rm. T-715.

Thanks for looking out for my Joe!
~~~
Pssst. Happy birthday to Alice, Vince, Donna (bowlergirl!), and Baby Ethan. :)

Evolution of a PICC Arm Band

Today I share with you the evolution of a PICC Arm Band, and the innovative nature of my husband! When Joe had his PICC line placed last Thursday, they sent him home with this long folded up tube of "stuff." The idea was to snip off sections as needed and use those sections to cover his PICC. As you can see from the first photo, the material is cheap, kind of ugly, and it kept falling off. Plus, no matter how long we cut the material, once it was on Joe's arm it seemed to be too short.

Being the loving wife that I try to be and a joyful newbie knitter, I decided that it would be fun to knit Joe a PICC arm band. In fact, months ago, I remembered that I had come across a free pattern at KnitPicks.com. I even had the yarn that they recommended - one that they said "minimizes pilling and stretching." It really is a lovely yarn. And I knitted up the band in no time. It looked absolutely beautiful! (not that I'm bragging or anything) For the first five seconds that is, then it proceeded to prove that it in fact, maximizes pilling and stretching. At least when knitted up by a newbie like me. It looked perfectly snug when Joe put it on. Even a little bit tight. But once those first five seconds passed it proceeded to stretch enough it could have fit around his thigh. *sigh*

Being the innovative person that he is (and loving - Joe was really intent on making the arm band work!) Joe suggested using bicep bands to hold the arm band in place. PERFECT!

But then, my innovative husband came up with an even more perfect idea that will have PICC line wearers everywhere running to their nearest sports store. Joe was watching basketball, and noticed that a bunch of the players were wearing these sports sleeves (they are actually called shooting sleeves in case you are sports illiterate and curious.) They looked like they had just the right amount of stretch, and because they are made for athletes, we figured they had to be comfortable and breathable as well. Yes, yes, yes. Joe is a genius. Maybe Nike will hire him to create a line called "NikeChemo." (Are you listening Nike? huh, huh, huh? We LOVE YOU!) The sleeve works like a charm. It also has the added benefit of creating instant long sleeves, which is perfect for Joe since he has to cover up when going outside to protect his skin from the sun. The nurses at the BMT office were so impressed, they said that they were going to share the idea with all of their patients with PICC lines. Apparently, patients have come up with some pretty crazy excuses for arm bands. Joe's so smart. He's also a wannabe athlete. (shhh...don't tell him i said that!)

We received some hopeful news today! After a bit of a delay, we finally got Joe's CMV results from both this past Tuesday and this past Thursday. Both were NEGATIVE. We were so excited. Joe talked to one of the doctors on the phone today, and he could practically hear the doc jumping up and down with joy! This was a nice change from yesterday. Yesterday, Joe and I went to the hospital for his Cidofovir. Joe also ended up getting another platelet transfusion. When we met up with the doctor he sounded so serious and concerned about Joe's progress. We're still gunning for a miracle as far as Joe's next bone marrow biopsy. Another thing that gave us a little bit of hope today is that Joe's WBC has inched up a bit more. It is actually higher than it has been in weeks. Hopefully this is a good sign. Keep on praying!!!!!!! Second transplant - pshaw!

Don't forget. There are still a few more days to take advantage of the "Thanks Mom Marrow Donor Drive." You can register to be a donor for FREE if you sign up before May 21. Please, please, please, help us spread the word. It would mean so much to us. (Thanks Tina! We saw that you posted about it. :) )

Day +126

We had a pleasant weekend. On Saturday, my cousins stopped by to visit us. It had been a year and a half since we had seen Yi-Shan and Osamu. It had been close to three years since I had seen Yi-Ting...Joe was able to meet her for the first time. We had great fun hanging out. My mom came over too.

Sunday was Mother's Day. After calling our moms, Joe and I went to the hospital to have his blood drawn. We decided to wait for the results in case he needed anything. Joe's parents so kindly offered to meet us at home with lunch. Joe ended up needing another platelet transfusion which meant some waiting, so Joe's parents ended up bringing lunch to the hospital! It was nice to spend time with them even if it was in the hospital. After Joe's transfusion, he decided it would be fun to go visit my parents. We would see my cousins too, since they were staying there. It had been over a year since we went back to my parents house. So off we went! It was fun, and we stuffed ourselves silly!!!! As a rule, I like to have our moms over for a meal on Mother's Day. But we have the greatest moms ever and they were more than happy to each provide us with a good meal this year. Thank you!!!!!!

Today we went back to visit the doctor. After the platelet transfusion on Sunday, it seems that Joe's count only went up a little bit. We were excited on Sunday because Joe's WBC had gone up a bit; by today it had not gone up or down. And Joe's hemoglobin went down slightly. As of Sunday's blood draw, Joe is also still CMV positive. Joe's doctor said that it is pretty amazing that after so many weeks of being CMV positive Joe has shown no symptoms. At least 80% of patients who test CMV positive for a few weeks exhibit symptoms like pneumonia. We are so grateful Joe has not shown any symptoms, but it sure would be nice if Joe were negative again so we wouldn't even have to worry about it. For now, Joe is going to be continuing Ganciclovir twice a day for another week, and getting another Cidofovir treatment on Thursday. Pretty much, we heard two good things today: 1.) Joe doesn't have any symptoms from CMV. 2.) Joe's rash really and truly seems to be getting better.

Then the serious talk began. As noted before, Joe will be getting another bone marrow biopsy next week. Now it looks like it will be on Monday, May 21. This biopsy will determine much of what our next year will be like. If Joe's marrow shows improvement as far as a decrease in abnormal cells and an increase in donor cells, we will continue with monthly Vidaza. If Joe continues to show signs of relapse or no change at all then a second transplant is definite. Joe's treatment would follow that of patients with AML (acute myelogenous leukemia.) Joe would be admitted to the hospital for 7-10 days for induction chemotherapy and low-dose radiation. The intent would be to bring him into remission. Following induction, Joe would recover for four weeks and then go into transplant with a different donor. Joe's doctor is an extremely positive person, and for him to discuss all of this so seriously showed us that it is a very real possibility. In fact, one of the doctors on the team was already prepared to start Joe on induction chemo before finding out the results of Joe's next bone marrow biopsy.

It is feeling very surreal. Pretty much we would be starting everything all over again. We're just being ourselves right now. Who knows what kind of miracle God may have in store for us by next week. The thing is, although I'm the opposite of thrilled about the possibility of that "second option," Joe has proven to me that he has the strength, stamina, perserverance, and faith to handle anything that comes his way. He has said himself that physically, mentally, and spiritually he feels great. It is his insides that seem to be wreaking havoc. If I had any doubts before, I certainly do not have any doubts now that Joe will overcome any obstacles in his way. Everything just might take a bit longer than anticipated. That is okay. God has perfect timing, and who are we to interfere with that?

p.s. There is a sweet boy named Shane who has ALL and is collecting birthday cards! If you get a chance, send him one. Click on the links for more info, or visit http://www.shaneswish.com/.

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Thank you to both of our moms for never taking breaks from being moms - even on Mother's Day!

Thank you to Yi-Ting, Yi-Shan, & Osamu for coming to visit us!!!! We loved hanging out with you.

Thank you I-ju for calling us from Taiwan. Sorry, we missed your call, but we loved hearing your voice!

Thank you TK for your company!

Thank you Roger for the beautiful, beautiful card. We heard your had great talent and creativity, now we know it is so true!

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It is not for you to know the times or dates the Father has set by his own authority. But you will receive power when the Holy Spirit comes on you; and you will be my witnesses in Jerusalem, and in all Judea and Samaria, and to the ends of the earth.
~Acts 1:7-8