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

We could really use some prayer right about now...

This past week, we really felt like we had rounded a corner in our journey. Joe was feeling better, the rash was fading to nothingness, the sun was shining. All we needed was for Joe's counts to start moving in the proper direction. Well, today we learned that if we did round a corner - it is a detour, and we've hit a major pothole. Fortunately, we are from the 'Burgh. And if there is anything that people from the 'Burgh can handle, it is detours and potholes (and a weird new mascot...). Nothing can stop us from reaching our intended destination.

Joe started off the day with a blood draw and a dose of Pentamidine. The results from the blood draw showed that his WBC is still low and his platelets are creeping down. His hemoglobin is still holding steady. Later in the morning we had an appointment with the doctor. We were just doing our thing, grumbling about the long wait, talkin' about the weather, remarking on Joe's peach fuzz five o'clock shadow, and doing some reading. Then we received some results from the bone marrow biopsy Joe had on Tuesday. It showed that 30% of Joe's cells display chromosome abnormalities - those abnormalities that put us in this predicament in the first place. The FISH for donor cells has not come back yet. But if we assume that the cells with abnormalities are Joe's, and the cells without are any combination of Joe and the donor, then Joe's marrow is now no more than 70% donor. This was not the news that we wanted to hear today. It just seems impossible that such a drastic change could occur in two weeks. The doctor is concerned, as one should be in this situation, but NOT worried. Remember, Pittsburghers know how to navigate detours and potholes. Joe was started on another round of Vidaza today. It worked really well the first time his graft dropped, so there are high hopes that it will do the trick again this time. To further discourage Joe's cells from getting out of control and to encourage the donor cells to fight harder since they are still in the majority, Joe's steroids have been tapered even more, and he has been completely taken off of one of his immunosuppresants. Please pray that the donor cells take over once and for all, and that Joe's GVHD doesn't flare uncontrollably.

Amazingly enough, even after receiving this news Joe and I seem to be handling it very well (if I do say so myself). We're a little more quiet today, but far from mopey and not quite discouraged. I can't speak for Joe (although from our conversations and our day, I can say that I continue to be amazed by his strength), but as for me I feel this strange peace about everything. My mind and my heart seem unable to waver from being completely positive that everything will be fine and that God will provide Joe with complete healing. Some might say that I'm in denial, or it hasn't hit me yet, or I'm being a bit naive. I don't think so. I can't think so. This whole MDS thing has been horrible. Yet, so many positive and wonderful things have blossomed from the muck and mire that is MDS. Joe and I have grown in so many ways. Joe in particular has developed unbelievable strength and grace in dealing with the ups and downs of his treatment. Then there is the support from family and friends, the stories of people inspired by Joe's story, and the people who have stepped up and registered to be donors, or donated cord blood. I think that there are a lot more wonderful things in store for us...not the least of which is complete healing for Joe. Currently, I refuse to believe anything else.

Here's my theme song for the day.

God will make a way
Where there seems to be no way
He works in ways we cannot see
He will make a way for me
He will be my guide
Hold me closely to His side
With love and strength for each new day
He will make a way
He will make a way

By a roadway in the wilderness
He'll lead me
And rivers in the desert will I see
Heaven and earth will fade
But His word will still remain
He will do something new today.

itchy, itchy, itch, itch...

Joe continues to itch from his rash. I keep threatening to cover his hands with socks to keep him from scratching. I suppose, I need to just do it! The problem would be figuring out a way to Joe proof them, so that he can't take them off! Joe is still taking steroids at the increased level, which is actually the same amount he took the very first time the GVHD began to appear. Joe was also prescribed a steroid cream. Both help some, but not enough. I think that the itchiness is counteracting the loopiness that Joe would normally be experiencing by now from the steroids. Oh, but the steroids have been providing Joe with some very vivid dreams. Last night was the best one yet. Joe had a dream that scratching fairies were giving him permission, in fact encouraging, him to scratch. Great. Go away fairies, go away!

Because Joe's rash is being so ugly and stubborn, we are now scheduled to go to the hospital every day this week. This way the doctors are able to keep an eye on the rash and act accordingly. The good news is that the daily visits no longer mean daily blood draws. As originally planned, Joe will only have a total of two blood draws this week. One down, one to go!

The photo doesn't even come close to doing it justice. But I had to share the beautiful card that our friend Patrick made for us. It is just too cool!

About Joe.

Last Tuesday, as I was ending a brief and tumultuous affair with Mr. Stomach Flu, Joe was having trouble escaping the grasp of the evil temptress Ms. CMV. Although Mr. Ganciclovir tried time and time again to intervene on our behalf, Ms. CMV refused to let go (who could blame her?) We ended up firing Mr. Ganciclovir and hiring Mr. Foscarnet. It still took some time, but being meaner and tougher , Mr. Foscarnet with his twice a day interventions seems to have scared Ms. CMV into submission. As of this past Monday, Ms. CMV has gone into hiding. Just to be sure that she won’t be bothering Joe anymore, Mr. Foscarnet will continue to intervene twice a day. If Ms. CMV behaves tomorrow and Monday, then Mr. Foscarnet has agreed to only visit once a day for a week or so. As for me, my relationship with Mr. Stomach Flu is completely over. Affairs are bad. Falling under the spell of an evil temptress is also bad.

Meanwhile, Joe started to develop cold/flu symptoms. Last week, it was mostly some coughing and sniffling in the mornings and evenings. The coughing and sniffling steadily increased until Saturday evening when Joe started to feel chills. On Sunday, he felt a bit better, but his WBC had fallen to only 0.7k/mcL. The doctor wanted to be sure that Joe wasn’t developing pneumonia. He also wanted to confirm that Joe ‘s counts were dropping due to the CMV, and not something else. So on Sunday, Joe was admitted to the hospital. Joe was given all kinds of antibiotics to ensure he was armed against all kinds of infections. A chest x-ray showed no signs of pneumonia.

By Monday, Joe was feeling a bit better. A bone marrow biopsy was scheduled for the afternoon. Joe was introduced to the wonders of morphine for the very first time. It is a amazing that it was never offered before. It made the biopsy so much more pleasant. It still wasn’t fun of course. But it was far better than the extreme torture Joe has endured in the past. Tuesday was better yet, although the cough was worse. What made Tuesday even better was that the CMV results came back negative. By evening, the doctors decided that there was no reason for Joe to be in the hospital anymore. We left the hospital sometime after 9pm last night. Of course we still have to return every single day.

That brings us to today. It was a long day. Joe’s rash from GVHD now covers about 90% of his body. Many areas are starting to peel. Joe’s eyes have become puffy and dry. This is either due to the GVHD, or water retention from the steroids. The coughing continues. And since Joe has had his line in for nine weeks now, the area under and around his dressing has become very sensitive. It peels and bleeds, and the dressings start to look ratty before his weekly dressing changes. Still, Joe remains strong and says he doesn’t feel too bad. The first thing today was that one of Joe’s lumens was clogged. This is an easy fix with Retavase. Today however, it took longer than usual. More of a nuisance than anything else. Then Joe’s magnesium results took an unusually long time to return. Of course that was the one thing that Joe ended up needing more of, which further extended our day. Finally, Joe received a call from one of the doctors. The results from his bone marrow biopsy showed that the graft went from 98% to 89%. Still, there is no room for worrying around here. The doctors said that it is not uncommon to see fluctuations this early. Also, they are encouraged that this was caught early. Joe is at day 64, and his next biopsy originally was not going to be until day 100. The plan is that Joe will be getting five days of Vidaza starting tomorrow. Hopefully, this will scare Joe’s cells into going away, and his donor's cells will be able to fight harder. This time, the dosage of Vidaza will be lower, and it will be administered IV rather than with injections. No worries. Only prayers, hugs, and positive thoughts are welcome.

That concludes this update on Joe.

Hallelujah! Generous contribution!

I have recently been informed that marrowtrek.org has received its first generous contribution from an Anonymous donor I will refer to only as W.H. Gates (HIPAA regulations prohibit me from revealing full names) in the amount of one hundred million dollars! This unexpected windfall dwarfs our measly goal. Since we at marrowtrek.org are now unbelievably rich beyond our wildest dreams, we are immediately closing the website. So everything I posted previously, disregard.

Haha! Of course, that whole preceding paragraph was completely fabricated (e.g. LIES). Just wanted to show you what we might achieve collectively with a little elbow grease / ga you / chutzpah. If only life were as easy as above. Do you think Pittsburgh's David L. Lawrence Convention Center was built in a day?! (Apparently the answer to that is "yes"). marrowtrek.org operators (i.e. internet trolls) are eagerly standing by for your generous donations. You say that you don't have one hundred million dollars to spare? Well, we'll gladly take one hundred million pennies.

Now, I went to Stanford and have a medical degree from another prestigious university, so math isn't exactly my strong suit. But let's just suppose that you decide to make a sorta generous donation of $3 per mile of trek. Assuming Jim and Jesse accomplish their trek, your total pledge is less than $10,000! If you think about it, that's mere pennies a day for the next 50 years or so: you can share this gift of giving with your grandchildren and probably your grandchildren's grandchildren. I know that it's quite difficult to part with hard earned moulah. Take me for instance. Do you think it's easy sitting around all day collecting disability checks?! Heck no! (I'll let you in on a little secret to being rich like me- I am easily a thousand-aire. All you have to do is contract a life-threatening bone marrow cancer and undergo intense chemo treatments followed by a bone marrow transplant and the inherent 6-12 months of follow up and lifetime check-ups. Piece of cake!) Getting back to the topic at hand, enter the beauty of second mortgages and home equity lines of credit! Free money! No really, I'm not saying you have to or even should bankrupt yourself to contribute to this cause but maybe the kids could go without that 10th Wii-Box-PS5 gaming console brought to you by the MicroSonyTendo conglomerate. I say, let's you and I bring back a wooden toys movement. Better yet, homemade wooden toys.

Incidentally, if W.H. Gates or perhaps M. Jordan or O. Winfrey happen upon this blog and are really bored cleaning the trophy case with $1000 bills or lining their rare Sumatran white-tailed endangered hamster cages with Benjamins, please pinch us off a little sump'n sump'n. I'm sure y'all have a couple mil stuck in the lint trap of your dryers.

Okay... as you can see steroids is good stuff! Seriously, please check out marrowtrek.org. There's not much to the website right now, but since it's early, we are trying to get the word out about this. My people are in contact with people who might know Katie Couric and Stone Phillips as of this writing. In my last blog entry, I so casually slipped in that Jim and Jesse are trekking 3,100 miles over four months. If you really stop to think about this, that's 3,100 freakin' miles over four months! They did this sorta thing once, which makes them manly men. But to do it again takes some degree of brain damage. So if my urgings don't make you feel compelled to contribute, do it for these two poor souls... Man, if I can just get every one of my friends and acquaintances to contribute a grand total of just a single dollar, our project wouldn't even get off the ground since I've counted about 5 friends, and that's including Karen. But you, you can really make a difference.

Alright, I promise not to bombard you too much about the Marrow Trek (at least, not until it gets closer to "go" time). A little update on me... the hemorrhagic cystitis issue is improving, meaning I run around the house pantsless only about once an hour instead of two or three. The skin rash I've had from graft-versus-host disease has gotten a little worse as they have been decreasing my immunosuppression in the name of more effectively treating the CMV. Bloodwork for CMV was drawn again today and I should know the results by tomorrow. We're all praying really hard that it's finally going to be negative. Otherwise, I'll have to switch to a different IV drug which has to be monitored even more carefully.

That's it.

Joe

Hemorrhagic cystitis?!

Hey everybody!

Tomorrow will be Day 50 post-transplant! Unfortunately, as you probably know by now, I got my first semi-serious complication last week with a CMV infection. The good news is I still feel good overall and I've been getting to come home in the afternoon/evenings the past few days. The bad news is that the CMV has not been completely eradicated and the virus was still detected in my bloodstream as of yesterday's blood draw. So for now, I have to continue with the twice a day IV ganciclovir and my next blood test for CMV will be Thursday. So please pray that this will be negative on Thursday. Ganciclovir is supposed to be very effective in treating CMV but has the bad side effect of decreasing my white blood cell counts, so ideally, I don't want to be on the medication for too long.

Now, we'll play scenario games again. Imagine this time that as a reward for a long, hard week at the office, you and your lovely wife enjoy Belgian chocolate dipped strawberries and mimosas on late Saturday morning after which you hop in your fire red Lamborghini and motor to the day spa. There you enjoy couples total body massage/facial/wax/manicure/pedicure/body wrap treatments given by Angelina Jolie and Brad Pitt (in my case, either one would suffice... you know, Brad and I would talk politics and sports). Then, you take your private jet to partake of a late lunch at, let's say, Spago, prepared by your personal chef, Iron Chef. You do some shopping on Rodeo Drive and buy a couple Rolexes or Pateks and consider buying a poodle to go with those fabulous Manolos. Now it's time to enjoy a romantic dinner at your favorite restaurant on Mars with an incredible view of Earth. You make it back just in time for courtside seats at the Super Bowl/World Series/Stanley Cup finals topped off with a private performance by the "All-Stars" of the world's greatest symphonies including a world premiere of a ballad written and performed in your honor by Luciano Pavarotti.

Now, let's change the scenario a little. Instead of chocolate and alcoholic beverages on a Saturday morning, imagine that you have to urinate; instead of a Lamborghini, you have to urinate; instead of total body treatments, you have to urinate; yep, instead of Angelina and Brad, urinate; instead of private jet, Spago, Iron chef: urinate. I think you're starting to get the picture. Welcome to the world of hemorrhagic cystitis!! Sounds fancy and complicated doesn't it?! It's really about urinating, and on top of that, there's some blood involved. Really I'll be sitting there minding my own business happily picking my nose or something as intellectual as that and suddenly, without appropriate warning, my urinary apparatus and brain will shout "You better find a toilet for me in the next three seconds or I'm going all over your pants buddy! One... two..." This happens every 20-30 minutes. In all seriousness, this hemorrhagic cystitis thing is supposed to be a fairly common complication after a bone marrow transplant. It involves inflammation of the bladder and can lead to urgency (feeling the need to pee all the time), frequency (going all the time), burning and pain (not fun), and hematuria (peeing blood... yikes!). It's rather disconcerting seeing blood come out, but fortunately, this whole thing is supposed to be self-limited. So for now, I'm told to drink lots of fluids and ride it out. Unfortunately, this thing can last up to six months (!) which would be a worse case scenario. Again, let's just hope and pray that my doctors don't have to end up putting instruments up my you know what and do "bladder irrigation."

So my advice to you: try to avoid getting hemorrhagic cystitis. And if you see me whizzing by you (pun intended), it's not because I'm being rude. Just get outta the way, okay?!

Joe

98%!

We were back at the doctor's office today. Joe had his blood drawn, and his dressing change. Such excitement! But the really fun part was the visit with the doctor. After some chatting, he went to check on Joe's biopsy results. When the doctor returned, he announced that Joe is officially 98% female!!!!!! This means that he is 98% engrafted. Wonderful praise God news! Since that announcement, Joe just keeps hearing that he will likely become more feminine now as well as sweeter and more compassionate. Teehee. Joe of course is taking all the jokes like a man...or a woman. I don't know anymore. In any case, Joe's smile is as big as ever, and he continues to exude extreme positivity! Joe's biopsy also noted no more bad stuff, and all good stuff. Joe's celluarity, which is at 20-30% is still lower than the norm, which is around 60%. However, this is normal since he is only 38 days out from transplant. So all continues to go very, very well.

This evening, we had the pleasure of receiving a visit from some guys from our fellowship. It was so nice for Joe to hang out with some people outside of the family, and not over the phone! Thank you Geoff, Mammen, and Ray for stopping by!

Happy Groundhog's Day!

We had a long day at the hospital. But as Joe says, having two blissful days off made it all worth it. Joe seems to be developing some early signs of GVHD. Some of it is natural and necessary. We just need to keep a close watch on everything to make sure it doesn't get too serious. Joe's symptoms started with a rash that looked like dry skin. He also had itchiness around his eyes. This morning the rash appeared more pronounced, mostly on his upper body, and the area around his eyes was very red. The itchiness became unbearable. At the hospital, we waited an eternity. Then Joe had his blood drawn. Then we waited another eternity. We saw the doctor. Joe was prescribed some steroids for the itchiness. The doctor also requested a skin biopsy to confirm the nature of the rash. Yup, we waited another eternity for the skin biopsy to be done. It went smoothly. Hopefully it heals more quickly than Joe's last skin biopsy. The last time, it was on a pressure spot, so the area took a very long time to heal.

The good news is that Joe's WBC is now at 4300! His Hemoglobin is 11.0. Lookin' good, lookin' good! Since we were already at the hospital and Joe's magnesium was bordering on low, we went up to Short Stay so Joe could get an IV. We were at the hospital for a good 7 hours today. But provided that Joe's rash behaves, we have the weekend off. :)

Besides being frustrated by the itchiness and more drugs, Joe is in good spirits. He is quick to say this is no fun at all. But he is also quick to mention that he knows he has been blessed - from finding a donor within 6 months to doing as well as can be expected pre and post-transplant. Joe is amazing!

Discovered an article on Erica's website, and I thought it was worth sharing.
Too Young for This: Facing Cancer Under 40
New York Times, January 30, 2007

Thank you Pei-chen for the sweet gift. You are always so considerate. Hope we can see you again soon!

Day -1

Wow, wow, wow! All of you did an amazing job making Joe's day today. The hospital delivered 28 cards to his room today! This makes a total of 30 cards that he has received from the WPAH site, not to mention the ones he's received by snail mail. The lady who delivered the cards said that if he received a dozen more, he may break a record! Joe was so thrilled to read all of the sweet and thoughtful messages. He received cards from three different countries. After every few cards, Joe would look down and exclaim, "Wow! There are still so many cards left!" Thank you so much for the outpouring of love. The smiles on Joe's face were priceless. If you haven't already, you can still join in the fun! Just click here. Follow the directions and choose "West Penn Hospital." The best part is that it is free. :)

Last night Joe finished all of his chemotherapy. He was SO happy! Joe took it like a man, and that part is finally over.

Joe started his second dose of Thymoglobulin today. The wonderful part is that so far he is tolerating it extremely well. He has had no major side effects from it. Let's pray this continues to hold true! Apparently two other patients on the floor are receiving Thymoglobulin, and unfortunately they are not tolerating it so well. We don't know who they are, but we can surely say a prayer for them as well. It isn't easy for them, and it surely isn't easy for their families either.

Today, Joe also started taking two different anti-rejection drugs in pill form: FK5O6 and Cellcept. He will have to continue taking them for a year. Among other things he is also taking acylclovir, which he'll be on for at least 180 days. Also, avelox and diflucan which Joe will take until his neutrophil count rises again.

Tomorrow is the day! Day 0 (Zero) - Joe's new birthday. There will be no fireworks or fanfare. Just a bag of stem cells that he'll receive the same way he has received blood transfusions. That means today is Joe's last day being 100% Joe, 100% of the xy species, and 100%O+ blood type (His donor has A-type blood). This also means we need to be praying for his donor right now!!!!! This is her crazy day. After getting filgrastim injections for several days, she likely started the harvesting process this morning. The place where she is having her stem cells harvested is having her do a double donation. So she was hooked up for four or five hours this morning. She had, or will have a short break. Then this afternoon she'll be hooked up for another four or five hours. We are so incredibly thankful to this stranger for giving so much of herself so that Joe has a chance to be cured. How amazing is it that a girl of only 21 has been chosen to do something so noble, and has accepted the challenge. I imagine she has gone through so many emotions herself. She doesn't even know Joe! She is a very brave young lady. Hopefully one day, we will have the opportunity to meet her and thank her in person.

Shortly after Joe's transplant, either Tuesday or Wednesday and assuming all goes well, Joe will be able to go home. However, he'll have to return to the hospital every day for at least thirty days. Each day he'll have his blood drawn to see if he'll need any transfusions and to monitor his progress. We'll probably stay with his family initially so that we can all be together.

That's it for today's update. Thank you again so very, very much for all of the love you have sent Joe's way. It has really lifted his spirits to know that so many people are rooting for him.

When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.
~Isaiah 43:2

Another Day.

Today's title is brought to you, courtesy of Joe. :)

We went to the hospital today for another blood draw. Joe's WBC dipped again. Still, his counts are better than when he was first diagnosed, he still feels well, and they are hovering in an acceptable range. Joe called the doctor's office and was told he wouldn't need a Neupogen injection. So that is how I define acceptable range. :)

We were able to see several of the residents and have lunch with them. That was nice. We got to see Lilly too, which is always wonderful.
After arriving home, we received two packages! One from My cousins Sandy and Osamu. It was beautiful and filled with fun "spa" stuff. Very luxurious. Thank you!!!!! We were supposed to see Sandy and Osamu for Christmas. Unfortunately, due to Joe's low counts they decided to postpone the trip until Spring. We missed seeing them, but look forward to seeing them in a few months!

The other was from my cousin Cathleen and 3rd Auntie (Sandy's mom and sister!). They made us the cutest things, as you can see from the picture (although they are even lovelier in person). And the best part is that they said that each bead symbolizes love and a blessing for us. How sweet! Thank you!

Another Happy Birthday to Lora and ChristinaMarie!

Merry Christmas!!!!!!

In those days Caesar Augustus issued a decree that a census should be taken of the entire Roman world. (This was the first census that took place while Quirnius was governor of Syria.) And everyone went to his own town to register. So Joseph also went up from the town of Nazareth in Galilee to Judea, to Bethlehem the town of David, because he belonged to the house and line of David. He went there to register with Mary, who was pledged to be married to him and was expecting a child. While they were there, the time came for the baby to be born, and she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no room for them in the inn.

And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them. "Do not be afraid, I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger."

Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,

"Glory to God in the highest, and on earth peace to men on whom his favor rests."

When the angels had left them and gone into heaven, the shepherds said to one another, "Let's go to Bethlehem and see this thing that has happened, which the Lord has told us about."

So they hurried off and found Mary and Joseph, and the baby, who was lying in the manger. When they had seen him, they spread the word concerning what had been told them about this child, and all who heard it were amazed at what the shepherds said to them. But Mary treasured up all these things and pondered them in her heart. The shepherds returned, glorifying and praising God for all the things they had heard and seen, which were just as they had been told.

~Luke 2:1-20

This has been a wonderful Christmas. God's love has been everywhere. Our mantle and fridge are filled with Christmas cards and photos, our tummies are filled with food, and we've been surrounded by wonderful friends and family.

On Saturday we were able to have lunch with "Physics" Auntie and Uncle Lin. They took us to the perfect place, with yummy food and no crowds. We had such a wonderful time chatting about everything, and getting some science lessons as well. (Auntie Lin has probably tutored every Taiwanese kid in the area, including me and Joe!)

Sunday, I went off to church and Joe stayed home because of the large service. In the afternoon, David came over to watch the Steelers game with Joe. David's company was very much appreciated. The game is not really worth mentioning. In the evening, David joined our families for Christmas dinner! We did the "Chinese restaurant thing" so we could focus on fun and family, rather than cooking and cleaning. It was great. At the restaurant we were able to see several friends and that was great too!

After dinner, we followed the annual tradition of going to Joe's parents house to open gifts. As usual it was fun and chaotic. Somehow though, it felt much more special and meaningful this year. We didn't really discuss it, but I'm sure everyone had in their mind all that we have been through this year and what is to come. Maybe I'm dreaming and imagining things, but the time we had together as a family last night just seemed so perfect. Then again, of course I didn't imagine it. It was perfect. I'm so thankful to our families. They are just wonderful.

This week is all about resting and relaxing and preparing for the hospital. Joe will get his blood drawn tomorrow. I'll update when we find out the results.

Thank you, thank you, thank you to our parents and brothers for being so generous with your love. Your gifts were generous too. But most appreciated is your love, patience, support, and time. We love you!!!!!!

Thank you David for joining us. You have been such a great friend to Joe, and our families think you're the best!

Thank you to "Physics" Auntie and Uncle Lin for treating us to a wonderful lunch. What a cherished memory.

Thank you Auntie S.B. Lin for the homemade food. It is SO yummy. Our families are so jealous! (Ooops, I guess we should have shared!)

Thank you so very much to Crystal; Pastor Jim & Kathy; Peggy, Kevin, Meagan, Lauren, & Vivian; Louison, Ping & Ethan; and Julie for all the yummy treats and goodies. I think everyone is trying to plump up Joe for transplant! Thank you, thank you!

Thank you to Gretchen and David for the gifts. You are such wonderful encouragement.

And thank you to my 2nd Auntie & Uncle and 3rd Auntie & Uncle and all of my dear cousins. You have shown us so much love in so many ways even though you are all so far away. I really have the best relatives!

A very HAPPY HAPPY BIRTHDAY to Tim (yesterday),
December (today),
Lora, and ChristinaMarie (tomorow)!!!!!!!!

A very Merry Christmas and a Happy New Year to everyone!!!!!!!!!!!!

Final Verdict.

I wanted to share a photo from a bone marrow drive at the end of November. Our friend Eddie, (who will always be a Pittsburgher even though he's now living in North Carolina) worked with Maria from CLLF and Pastor Elijah from Chinese Bible Church of N.C. to host a drive. We are so thankful to all three of them, as well as the church for their participation and prayers. If it weren't for all the people who are registering to be donors, Joe might still be searching for the right match.

Speaking of which...Joe's donor has officially been chosen, and the selection has been sealed! The winner is...the 21 year old female. Despite the initial doubts of the NMDP about her committment, she has been following through with all of her appointments. She was the ultimate winner because of her age, and because Joe's doctors prefer a PBSC donation to a bone marrow donation. (If you recall, the 37 year old male was only able to be a bone marrow donor.) Joe will be admitted to the hospital on January 3. That will be a tough day. Joe will be getting a bone marrow biopsy and a lumbar puncture. He'll also have a central line put in, and begin chemo. Joe will be given chemo for 5 days. On January 8th, Joe gets a "vacation day." At least from chemo. January 9th will be "Day 0" - transplant day. Meanwhile, Joe's donor will be getting five days of filgrastim injections. PBSC cells will be harvested on the 8th and the 9th. It won't be such a walk in the park for her either. We are SO grateful to her for doing this. Wow, everything is moving so fast.

Joe had his blood drawn today. Everything looks about the same. The good thing is that Joe still feels well, and there wasn't another drastic drop.

Thank you, thank you to everyone for being so loving and encouraging. As transplant day rolls near, and everything is actually being scheduled, we are realizing how real this is! Everyone has been amazing. Simply amazing.

Thank you to Mike & Amy, and Crystal for the fun gifts. You are each so sweet.
Thanks to mom and dad for the food! And thanks to Victor for playing with us and being such a great brother. (Awwwww...)

For to us a child is born,

to us a son is given,

and the government will be on his shoulders.

And he will be called

Wonderful Counselor, Mighty God,

Everlasting Father, Prince of Peace.

~Isaiah 9:6

Brother is home!

Victor is back in town. He's staying with us tonight. It's nice to have him back. On Saturday, Albert will be back, and my cousins Sandy and Osamu are coming too!

Tomorrow, Joe is getting his blood drawn again. We're praying that they go up so that he doesn't have to spend the holidays in seclusion. But if he does, so be it. We'll be together.

A very happy birthday to Sha! Thank you for being such a great friend.

I am the Lord's servant." Mary answered. "May it be to me as you have said." Then the angel left her.
~Luke 1:38

The Latest

All the test went smoothly yesterday, and that's according to Joe. The day started off with a pulmonary function test. Joe had the privilege of sitting in a phone booth like contraption with a nose-clip. I was kind and didn't post the nose-clip photo! All went smoothly, and I was greatly entertained by the gentleman running the test.

Next we had a bit of a break to catch up on some emails and news (The oldest person in the world is 115, and male.) We then headed off to the nuclear medicine department. Joe had an IV put in, and lots of blood drawn. Then an EKG and MUGA scan. This was the longest part of the day. Joe had to stay in certain positions for what felt like an eternity. He's really good at staying still though. Sometimes, I call him Mr. Tin Man. I suspect Joe took the opportunity to nap for a bit.

The final part of the day was a history and physical. Joe has gone over his history so many times, that this took very little time. Then we were done! We were able to enjoy lunch at around 3pm.

In the evening, we discovered that Joe's counts are not behaving very well. The Vidaza seems to be losing its powers. Joe's Hemoglobin is the only thing that seems to be staying in the normal range. Helps him keep a rosy glow!

Joe's Counts
WBC - 2.4 k/mcL
Hemoglobin - 15.6 g/dL
Platelet Count - 61 g/dL
Neutrophils - 28%
Neutrophils-absolute - 0.67 k/mcL

We'll have to be more cautious than ever. Our goal is to keep Joe out of the hospital until he is admitted for transplant. We're just going to take one day at a time though. That's all we can do.

Speaking of transplant, here is the latest news. The 21 year old female was CLEARED yesterday. This means that she is okay to be Joe's donor. Because of her size and Joe's size, she will probably have to give cells two days in a row. Joe will have the transplant on the second day when everything is shipped from wherever she is in the United States. The 37 year old male donor should be having his physical tomorrow. One thing that we learned about him, is that for whatever reason, he would only be able to do a bone marrow donation, as opposed to a PBSC donation. This changes the process for the donor, but shouldn't affect Joe too much. If the male is also cleared, then a final decision will be made as to who Joe's donor will be.

As far as dates are concerned, Joe will probably be admitted January 2nd or 3rd. The transplant will likely be on the 8th or 9th. This is only two weeks away!!!!! We are feeling so many different emotions. I'm not sure there are any words to perfectly describe what we are feeling. We are more than hopeful that all will go as smoothly as possible...or smoother than possible. We are glad that things are moving forward, but there is some anxiety mixed in there. Excited doesn't really fit the bill, since there are still risks and unknowns involved. I don't know. But I feel sure that everything will be okay. Thus far, everything has gone as well as can be, except for those silly counts suddenly deciding to go crazy. God is control, right? Yupyup. For sure.

A very happy happy belated birthday to dear Colm. Praying for you, your daddy, grandpa, and the whole family.

Happy belated birthday to Sabrina! I didn't realized you had the same birthday as Richard. How sweet!

Happy happy birthday to Alivia's mommy Emily. We are constantly praying for you.

"How will this be," Mary asked the angel, "since I am a virgin?"
The angel answered, "The Holy Spirit will come upon you, and the power of the Most High will overshadow you. SO the holy one to be born will be called the Son of God. Even Elizabeth your relative is going to have a child in her old age, and she who was said to be barren is in her sixth month. For nothing is impossible with God."
~Luke 1:34-37

Who will be the winner?????

The latest news regarding Joe's PBSC donor, is that both the 21 year old lady and the 37 year old gentleman are continuing with their appointments as scheduled. So we shall wait and see who will be awarded the prize of becoming Joe's donor!!!!!

Joe had his blood drawn on Monday. His counts haven't changed much since last week. Usually we'd see a nice rise in his counts by now. He still feels great. Joe will have his blood drawn again either on Thursday or Friday. We just continue to be thankful that his transplant is approaching. It is good...and it is a bit scary. But mostly we remain optimistic that everything will go smoothly.

Many thanks to Shelley and Ed, Akiko and Joe, and Sha for your very thoughtful gifts. We don't deserve to be so spoiled!

Mary was greatly troubled at his words and wondered what kind of greeting this might be. But the angel said to her, "Do not be afraid, Mary, you have found favor with God. You will be with child and give birth to a son, and you are to give him the name Jesus."
~Luke 1:29-31

No more Vidaza!!!!!!

God-willing, Joe will not be getting anymore Vidaza. Yippeeeeee!!!!!! He finished round 6 on Friday. This time around he is extra sore and extra itchy. Despite all that Joe is doing a remarkable job of not complaining much. His counts also do not seem to be responding as much as they used to. According to Friday's blood draw, Joe's WBC dipped down again. This makes us more grateful than ever that all the planning for Joe's transplant is well under way. Speaking of which, according to the NMDP, the 37 year old male donor mentioned in a previous post is very committed to the whole process. He has scheduled the pre-transplant informational meeting for tomorrow, and his physical for the 20th. Pray that all goes well!

We have so very much to be thankful for this weekend. Thank you to our CrossRoads brothers and sisters for entertaining us! All of you have been so amazing and so supportive in so many ways. Even long before Joe was diagnosed we have felt your love and we're grateful for it!!!!!

Thank you to Sheena for singing with me this morning. I love teaming up with you!

Thank you to Louis and Sha for feeding our egos and telling us we're cute all the time. And thanks for hanging out with us!

Thank you to Joe's mom and dad for a lovely lunch this weekend, and Thank you to Steve for joining us. How fun to swaps stories and memories!

Thank you to my cousin Pei-chen for the card. It makes us feel so special that you are always thinking about us no matter where you are in the world!

Thank you to Mrs. Ott, Patrick, and Susan for the gifts. Each of you had us jumping up and down and squealing with excitement. (Okay, okay...it was just me jumping up and down and squealing because that's what I do...but Joe had a big fat grin on his face which is the equivalent of jumping up and down and squealing!)

And as always, because we couldn't possibly say it enough (and because we mean it with our whole hearts each and every time...i promise it's not something we toss out lightly) thank you to every single person who has prayed for us, given us real hugs and virtual hugs, loved us and supported us. We are able to stay strong and be positive each day because God has surrounded us with the most amazing friends and family...and even people we do not know. How blessed are we?

In the sixth month, God sent the angel Gabriel to Nazareth, a town in Galilee, to a virgin pledged to be married to a man named Joseph, a descendant of David. The virgin's name was Mary. The angel went to her and said, "Greetings, you who are highly favored! The Lord is with you."
~Luke 1:26-28

Round 6!

All is well! Joe started Round 6 of his chemo on Monday. Today, the results of his blood draw showed that his counts are slowly sneaking back up. Very good sign. Speaking of counts and good signs, many know that Joe's dad went through a period of very low platelets. Well, he had his blood drawn on Friday, and everything is normal! Yay for that.

Either next week or the week after Joe will be spending a day at the hospital getting all kinds of fun tests to prep for his transplant. We should find out soon what day the test are scheduled.

We had a nice visit from Joe's med school friend Arun over the weekend. He just returned from 6 months in Iraq. It was so good to see Arun and hear all of his stories.

That's about it for today.

Oh yes, I received this message from Aplastic Anemia & MDS International Foundation yesterday...

"Who hasn't uttered the words, "I wish there was something I could do to help"? Now you can. Start shopping! At http://www.industrymailout.com/Industry/Redirect.aspx?u=39490&q=23712705&lm=5097448&r=37213&qz=c15215e62b0707092f1c81393ff61b46 you can buy the gifts you're planning to give this holiday season - like that DVD box set, cologne, or the wall-mounted flat-panel TV you've had your eye on - and help a great cause!
It's FREE -- no invisible costs or tricky obligations. Shop for everyday items from over 650 stores at the Mall at iGive.com, like Barnes & Noble, Lands' End, Best Buy, and Neiman Marcus. Up to 26% of each purchase is donated to the Aplastic Anemia & MDS International Foundation at no cost to you.
Start shopping today at http://www.industrymailout.com/Industry/Redirect.aspx?u=39490&q=23712705&lm=5097448&r=37213&qz=c15215e62b0707092f1c81393ff61b46 and help save lives this holiday season and every day at the Mall at iGive. "

Something to consider if you are doing online shopping, and you aren't already attached to another charity.

Happy day!

Praises!!!

We have a lot of praises to report today. :) Yesterday, Joe had his final blood draw of the week. Again his counts were low, but stable, so Joe weasled his way out of getting a biopsy! He was all smiles when he heard that.

We also had our appointment with the doctor. As stated before, Joe will be starting chemo round six on Monday. This will be his last round of Vidaza before transplant. Before transplant, Joe will be getting a lumbar puncture to ensure that there are no signs of MDS exhibited in his central nervous system. It is unlikely, but if there are signs, the doctors want to be able to treat it immediately. Joe will also be getting another bone marrow biopsy (can't weasle out of it every time!) so that there is base line data.

When we arrived home in the afternoon we had a message from Joe's transplant coordinator stating that his donor attended an information meeting yesterday, and set up an appointment for her physical for December 8. YAY! We're moving forward. Now we just continue to pray that all goes smoothly.

In other news, Joe beat his high score in Galaga! (I was just informed that the score above is now outdated...)
(If you are a Galaga pro and Joe's high score is in fact one of your low scores...please try to be kind.)
(Nope...no fancy schmancy PlayStation or XBox in our house. Just a "fancy schmancy" Super Joystick with a whole bunch of retro games that we purchased at a swap shop in Miami! *Have you used yours yet David?*)


A very happy birthday to both Uncle Antonio and Rowena. Happy celebrating. :)

Also, congratulations to Shalin! The next time we see him he will be a married man.

A little shout-out!

Keep up those prayers! Tomorrow afternoon Joe will get another blood draw, and we'll meet with the doctor. More details when we get them!!!!!

Also, I must wish Ray-Ray a very happy birthday, even though he is currently far far away. Hope you are having fun with your family!!!!

And speaking of family, tomorrow is my dear cousin Lilly's birthday (Dec. 1)!!!!!! She is as much a big sister as a cousin. She has spoiled me and teased me since I was a baby. I love you cousin Lilly/Lillian!!!!!!!!

No Biopsy!!!!!

Joe managed to avoid getting a biopsy today. YAY!!!! His counts weren't much better...but they weren't much worse either. Joe's doctor feels that even though the counts are lower than normal, they seem to be stable. Having a dip in the counts isn't unusual. Just the fact that they went so low was concerning. As planned, Joe will get another blood draw on Friday to confirm nothing weird is happening. If they still look about the same or higher, then chemo Round 6 begins on Monday. Friday is also our monthly appointment with the doctor, so we'll discuss more transplant details.

We did go to Pitt and speak with their chapter of APAMSA. Joe did a great job, and the students really seemed to be receptive to what he had to share. The hour went by much faster than we had anticipated. Thank you to David, Jamie, and May for all of your help coordinating everything!

Thank you to Sheena and Sheena's mom for the yummy food and for your friendship.

Thank you to Lauren and Eric for your sweet card. Hugs are the best, even when they are virtual. :)

Thank you to everyone who prayed extra hard, sent good vibes, crossed their fingers and toes, called, emailed, and otherwise expressed concern for Joe in the past two days. Wow! All of that love really worked. How blessed we are to have such a great network of support!!!!!!

...but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
~Isaiah 40:31