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.
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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

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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!)

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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. :)

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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.

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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!
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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
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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.

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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!
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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/.

~~~~
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!

~~~
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

Don't stop praying!

Yesterday, Joe had a PICC line put in. So far it seems to be far more comfortable than the ones in the past that jutted out from his neck! At times there is a little bit of pain or weirdness in his arm, but nothing too bad. Joe was started on Ganciclovir at the hospital yesterday morning. In the afternoon all the doses for the rest of the week were delivered to our front door. Just like the first time, the Ganciclovir comes in these cute little containers that look like baby bottles. Inside is what looks like a balloon filled with the medication. All we have to do is hook it to Joe's line and it runs for a little over an hour. The last time, Joe was getting his morning dose at the hospital and his evening dose at home. This time both doses can be done at home. This morning, Joe had an appointment so we brought the Ganciclovir so Joe could get his dose while we were waiting for our appointment. The nice thing is that Joe was given a kind of "Fanny Pack" so that he can just slip the bottle inside and continue on with his day.

Joe also received platelets yesterday. Today's results show that his platelet count didn't go up very much. Joe will go back to the hospital on Sunday for another blood draw to determine whether or not he needs another platelet transfusion.

Our next appointment with the doctor is on Tuesday the 15th. Joe's next bone marrow biopsy will probably be on May 22. Here is the part where we need EVERYONE to pray, and pray, and pray, and pray, and pray. We are all praying that the Vidaza is doing its job and Joe's abnormal cells are being suppressed and his donor cells are completely taking over. This is the ideal outcome. If this happens, then Joe will continue to receive Vidaza treatments monthly as maintenance. (Not sure how many months yet.) We don't really want to think of the alternative, but I must share so we can all pray more effectively! If the bone marrow biopsy shows that the donor cells are not increasing, then Joe will likely need to have a second transplant with a different donor. The second time (which of course we are praying never happens!) Joe would be getting low dose radiation in addition to all the other pre-transplant conditioning he had in January. Surely this second transplant business will never happen.

Joe and I are remaining hopeful and optimistic. All we can do is take one day at a time. We've found a kind of balance between expecting the best and being prepared for all things that are less-than-the-best.

We read a very inspiring article this week.
Teen cancer patient's blog celebrated life.

also, you must read this beautiful blog entry that was mentioned in the article... Whatever life we get is bonus. It is amazing that an 18 year old could be so wise.

Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my Savior.
~Habakkuk 3:19

Day +120

Joe's rash is definitely looking better. It still covers a large part of his body, but it is lighter now. It's also dry, but Joe does not have the intense flakiness that he had to deal with the last time. Today his steroids were tapered slightly. We are thankful for this, and just keep praying that the rash continues to get better. Steroids can be great, but they can be really awful as well.

Joe's counts are still very low of course. And his blood draw from Monday morning shows that he is still CMV positive. Not really surprising considering his level of steroids. (Oh, but we were hoping for a negative!) Tomorrow we go back to the hospital and Joe will be getting a PICC line. After that he will be getting a platelet transfusion (today's count was 11 g/dL.) Joe will also begin a one week treatment of Ganciclovir twice a day. This will not help his WBC at all, but hopefully in combination with Cidofovir every other week Joe's CMV will be negative again. Having a line put in will give Joe's arms a break from being poked all the time.

That's about it.

~~~
Thank you Sheena for hanging out with us yesterday! We'll miss you.

Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.
~ Hebrews 4:16

Day +118

Today we had a relatively quick hospital visit. We did have a little bit of entertainment in the waiting room in the form of a disgruntled patient loudly whispering to a couple near him about his long wait.

Joe's WBC and platelets are still low, although this time it was expected since he just had chemo last week...

Normal Ranges
WBC - [4.4-11.0] k/mcL
Platelet Count - [145-445] k/mcL

Joe's Counts
WBC - 0.5 k/mcL
Platelet Count - 18 g/dL

Joe was given a Neulasta (pegfilgrastim) injection today, which is esentially a longer-lasting form of Neupogen (filgrastim). Joe is not experiencing any bleeding or petechiae from his low platelet count. We figure each one of his platelets must be as strong as ten platelets from a "regular" person! We are going back to the hospital on Wednesday, so Joe was able to avoid a platelet transfusion today. It is very likely he'll need one on Wednesday, but who knows? We may experience a miracle. On Wednesday we'll also find out if Joe's blood draw from this morning is CMV negative or not. You can bet we are praying and praying and praying that it is negative. If it is positive then we'll be back in the hospital on Thursday for the six hour process of Cidofovir...and probably Ganciclovir as well.

Since Joe does not have a line anymore (and his platelet count is low) he is acquiring quite a number of lovely bruises from all the needles and IVs. The rash continues. It still has not reached the intensity that it did the last time, and we are praying that it won't. Today it does look a tiny bit lighter than yesterday. The doctor estimated that the rash is currently affecting about 54% of Joe's body.

That's about it. We are grateful that Joe's GVHD has stayed away from all of his internal organs. We are grateful that Joe still has a pretty healthy appetite. We are grateful that besides some (although sometimes a lot of) itchiness, symptomatically, Joe is feeling quite well. It is really a weird thing when you look at Joe, to realize that things are pretty chaotic on the inside.

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

Day +117

Thursday, Joe and I went back to the hospital for his third round of Cidofovir. If Joe is CMV negative on Monday, then we party! If he is still positive, then there is talk of giving him Ganciclovir and Cidofovir. There is a hope that the two together might effectively take care of the CMV.

Thursday, we knew would be a long day. The whole Cidofovir process takes 6 hours. (Joe also got platelets again, but that was relatively quick.)In the past, we usually went home around 2 or 3 in the afternoon. But last week was the Week of Waiting; we went home at 7pm. Still, we are blessed that Joe is able to go home. (Dear Baby Livi and her mom have been living at the hospital since her transplant two months ago.) Not only that, but we were blessed by a visit from our dear friend Sheena. You might remember that when Joe was admitted to the hospital shortly after being diagnosed, Sheena let me stay at her place many nights so that I wouldn't be as far from the hospital. Sheena started attending our church and fellowship the same time that Joe and I did. In the past four years she has become such a good friend. Unfortunately for us, she is finishing up dental school and leaving Pittsburgh this week. We're going to miss her so much!!!!!! Sheena has such a huge heart, and she is also just about as silly as I am. Actually, she may even be sillier. In any case, she made our long day at the hospital on Thursday feel much shorter. Thanks Sheena!!!!

Since Thursday, we have had a bit of a break from the hospital. Unfortunately, also since Thursday, Joe's rash has become increasingly worse. On Saturday, after a call to the doctor, Joe was put back on Cellcept - the immunosuppresant that was stopped when we first learned Joe's graft had dropped. This whole treatment process is so crazy. Lower the steroids and immunosuppresants and the GVHD starts to flare. Increase the meds and Joe's CMV becomes positive again. Then there is the chemo which initially lowers blood counts that are already low. Crazy.

When Joe starts to scratch he always gets a lecture from me...or a little slap on the wrist. This time around though, he is getting pretty smart. Joe will seemingly vanish into thin air, and the house will become very quiet. Then he will emerge again, looking a bit sheepish and with some patches of especially red skin. Very suspicious...

Our friend Sha invited me to go to the symphony with her on Saturday evening. I almost declined. I'm not with Joe all the time. But I am with him most of the time. Up until last night, all of my excursions were either during the day or they were only a very short distance from home. What can I say? I'm an overprotective wife. But Joe convinced me that he would be fine and that I should get out of the house - not only for my own sanity, but so that nice friends like Sha still love us once Joe is well enough to be out and about! Well, I had a wonderful time with Sha. It was a really fun night of music. Plus, I got to see my Uncle Kao. When I got home in the evening, I reenacted the whole experience for Joe. I'm not sure that the conductor or the musicians would appreciate my impressions, but Joe seemed to get a kick out of it. :)

We go back to the hospital in the morning. I'll keep everyone updated. Speaking of updates, check marrowtrek.org sometime this week. Jim & Jesse should be putting up an update on their progress soon!

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ANNOUNCEMENT

If you look at our links to the left, you will see that one of the girls in our prayers is named Kailee Wells. She is only ten years old and has already had two bone marrow transplants. Six years ago, her parents had an idea for a "Thanks Mom" bone marrow campaign. Since then they have been able to work with the NMDP to run a national bone marrow drive each year in honor of Mother's day. There are drives being held all over the country with a goal of 20,000 new registrants. You can also register online for free while funding lasts. The event runs from May 7-21. You can learn more here. Please, please, please SPREAD THE WORD!
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Thank you Sha for the lovely card that you sent!!!!

Thank you Indiana Mom & Dad and Monroeville Mom & Dad for visiting us this weekend and bringing food!

Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.
~Matthew 18:19-20

Keep up those prayers!!!!!!! (please)

Saturday...
Joe was started on Vidaza once again (a quarter dose like the last round). This was day two of round 2, post-transplant. On weekends the BMT office is closed, so Joe has to go to short stay. All of the nurses in short stay know us very well. It wasn't a very eventful day. For the last round of Vidaza, Joe had a line and thus he took advantage of the fact that Vidaza has been approved for IV administration. This time, since Joe doesn't have a line anymore, he has gone back to getting subcutaneous injections. With the quarter dose it is just one shot...not so bad, says the wife who isn't getting poked!

Sunday...
Joe had his blood drawn. Being a chemotherapy, Vidaza made Joe's counts even lower. Plans were made for a platelet transfusion to take place on Monday.

Monday...
The plan was to go to the BMT office. There we thought we might wait for 15, maybe 20 minutes for Joe to be called back to receive his Vidaza shot which would take a good 5 seconds. Then we would head up to short stay where we would wait about an hour for Joe's platelets. Platelets are fast, so the transfusion would take at most 15 minutes, and then we would be on our way home. We figured everything would take 2 hours...maybe 3 if things were really crazy. This is what we THOUGHT, because after months and months of going to the hospital and being given the opportunity to take full advantage of the WAITING rooms...we still haven't learned our lesson.

What really happened is that we went to the BMT office and waited for two hours before Joe was called back to receive his Vidaza shot which took all of 5 seconds. Then we headed up to short stay where we only had to wait about 15 minutes before Joe was taken to his room. At this point we were told that his platelets would arrive in an hour. Well, an hour came and went with no sign of platelets. Then a lovely nurse came and told us that they were informed that the platelets would arrive in 20 minutes. Apparently they were to arrive with the 2pm driver from the Central Blood Bank. Joe's platelets were not with the 2pm driver. We had to wait for the 3:10-3:15 driver. The 3:10-3:15 driver did not arrive until about 3:40, at which point the hospital people had to process it and such. Joe finally received his platelets at around 4pm. And yes, the transfusion took about 15 minutes. We waited over 5 hours for two procedures that took a total of 15 minutes and 5 seconds. The positive thing is that I was able to do plenty of reading and crocheting, and Joe was able to do plenty of reading and napping. The Benadryl that Joe was given before his transfusion did a great job of making him drowsy. The other positive thing is that Joe didn't have any reactions to his transfusion.

Today...
Today Joe had another blood draw. Everything was low again, which was expected. We also met with the doctor. Joe is going to be getting Vidaza each month again as a sort of maintenance. This sounds like a good idea right now. The not so great news is that after two negatives, Joe's Sunday blood draw showed that he is CMV is positive once again. That darn CMV loves to pop up and cause trouble all the time! Joe was already due for another dose of Cidofovir on Thursday. That will go as planned. Hopefully that will work to make that pesky CMV negative once again. If not then Joe might have to begin a combined therapy of Ganciclovir and Cidofovir.

The other thing is that Joe's rash started to flare up again. It is not too bad yet, but everyone would like it to stay "not too bad yet." So Joe's steroids were increased yet again. Not too high, but it already seems to be helping.

We are still smiling. In fact, on Monday one of the nurses said, "I think the two of you look happier every time I see you." Today, Joe's doctor said, "The two of you are always so positive." He thinks that all of this positivity has helped Joe to not look or feel as bad as many patients would during the "downs" of all the "ups and downs" Joe has been through. I think that it's true. One of the big things Joe and I have learned during this journey is that there is no point in worrying before you have to worry. And actually, with each "down" we experience, we are learning that there really is no sense in worrying then either. Worrying makes you feel miserable, it causes you to lose sleep, it gives you wrinkles, and in the end none of your problems are solved. Being positive makes you happy, allows for plenty of beauty rest, makes a better impact on others, and allows you to enjoy life despite all odds. :)

Thank you everyone for all of your prayers and all of the positive energy you've directed our way. Knowing we have so much love and support really helps us to continue to stay postiive.

Who of you by worrying can add a single hour to his life?
~Matthew 6:27