And so the journey continues...

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

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

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

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

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

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

6 weeks

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

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

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

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

Thank you for continued support and prayers.

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

bmbx #11

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

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

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

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

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

1000 Cranes!

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

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

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

~~~~~

Congratulations to Kitty & Anthony on their new baby boy.

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

for the cards. You put smiles on our faces!

Thank you:
Joanna
Uncle & Auntie
Pei-chen

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

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

Done with chemo.

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

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

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

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

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

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

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

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

Day 5 & 6

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

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

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

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

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

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

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

Day 1 of Induction Chemo.

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

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

Slight change of plans.

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

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

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

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

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

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

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

Update.

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

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

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

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

#10

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

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

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

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

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

The adventures of J.L.

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

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

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

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

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

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

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

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

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

hello!

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

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

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

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

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

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

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

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

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

Still smilin'!

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

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

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

Biopsy.

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

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

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

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

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

Update.

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

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

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

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

About Joe's hospital stay.

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

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

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

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

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

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

About Joe's birthday.

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

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

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

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

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

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

No more cryin' there.

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

Back in the slammer.

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

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

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

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

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

And a Happy 1 month birthday to Ocean!