How sweet it is...

First, the not so fun stuff. Joe's rash became increasingly worse over the weekend. Yesterday, his body was covered with red patches and spots, and his skin was flaking more than ever. Joe actually looked like he had a white beard because the peeling was so bad. Several times a day Joe goes through the ritual of slathering himself with lotion. I get the privilege of getting his back. Over the weekend, we resorted to good old petroleum jelly. It is working better than any lotion, but the effect still wears off within a few hours. It is really amazing. If I used a quarter of the amount Joe uses on myself, I'd look like an oil slick and then completely break out. Or, I'd look like a wannabe body builder. Last night it became pretty unbearable. Joe contacted the doctor who further increased Joe's steroids. Again, the increase is hopefully very temporary. Please pray that as Joe's GVHD is treated that he continues to test negative for CMV! (Friday's draw did test negative. Yay!) The increase did seem to help. Joe's rash was bearable today.

Joe's WBC continues to be low. We're hoping to see it go up by the end of the week. Joe got a Neupogen (filgrastim) shot today. That usually boosts his WBC for a couple days. Joe's platelets are creeping up ever so slowly. I consider that a good sign. The hemorrhagic cystitis is much better now, and the edema in his feet and ankle area seems to be better too.

We were not scheduled to go back to the hospital until Thursday. But then the doctors decided Wednesday would be better...and then they changed their minds again, so we'll be back tomorrow. That is okay. We did have the whole weekend away from the hospital!

Now for the more fun part. Our weekend was lovely. We got to spend some time with Joe's parents on Friday evening. Then on Saturday my parents and my brother joined us for lunch. It is always nice to spend time with our families. Saturday night, Joe was glued to the TV, thanks to college basketball.

On Sunday, Joe slept the day away. He was not awake for more than 30 minutes at a time until 6:30pm. Poor babe was absolutely exhausted. He finally woke up and promised to stay awake for at least three hours. Later in the evening, the doorbell rang. I was absolutely shocked to discover six of our friends from fellowship grinning from ear to ear outside our door. They brought us a beautiful cake. They didn't even complain when we made them stay huddled by the door since Joe's counts are still low. It was a great surprise to see them, and Joe was thrilled to see some familiar faces outside of the family. By this time, Joe was a bit wired from his steroids, and the two of us ended up reminiscing about our wedding day and other fun things until close to 3am. Ooops. That's okay, when we got to the hospital, we discovered that the doctor forgot to write orders for Joe to go to short stay, so we had to wait extra long. Joe got a little cat nap in the waiting room!

Today we did sappy squishy anniversary things like look at all of our photos and videos, and eat cake! The shirt Joe wore was my gift to him. It makes me smile!

Congratulations to Michael and Judy who got married on Saturday!

Thank you to Nancy, Bill, Evan, and Elijah for the gift. You guys put a huge smile on our faces! (Happy belated anniversary to you!)

Thank you to my Taichung Aunts, Uncles, and cousins for the card. And special thanks to my 3rd auntie for the handmade bear charm (so cute!) and generous gift.

Thank you to Caryn and Roia for serenading us over the weekend. You two are too funny.

Thank you to Eric, Vivian, Louis, Sha, Crystal, and Patrick for the big surprise! You guys are wonderful!

Thank you to Sha for the thoughtful gift and always treating us like royalty!

Thank you Joy, Jerry, and Alex for the very sweet card. We miss you and can't wait to see how much Alex has changed!

Many waters cannot quench love; rivers cannot wash it away.
~Song of Songs 7:7a

Day +80

This morning, Joe woke up with a start and realized that we forgot to set the alarm. Joe called the office to tell them we would be a little late for our 9:00am appointment. Actually, we could have been right on time, but Joe needed to get his blood drawn from the outpatient office first. Now that Joe doesn't have his line, he needs to get his blood drawn from the outpatient office if he's not going to short stay.

When we finally arrived at the BMT office around 9:30am, we discovered that the doctor who set up our appointment had given us the wrong time! We weren't supposed to be there until 3:30pm! Fortunately, the office didn't make us wait until 3:30 to be seen.

Joe's counts are still not so high. But we refuse to allow numbers on a piece of paper to determine what kind of day we have. We just have to accept that Joe's counts will be a bit wild for awhile, and that's okay. The good news. There is always some type of good news! On Monday, Joe had a blood draw for a chimerism test. The test showed that Joe's peripheral blood is 98-99% donor. This means that the Vidaza did what it needed to do. Let's just keep praying that those donor cells stay in control.

Joe's rash didn't look much better after the slight increase in steroids from Wednesday. Today, Joe was given a more significant increase. The doctor is hoping to taper the dosage again by Monday. The plan is that the kick up in steroids will cool down the GVHD so it doesn't get out of control. It is another balancing game. The risk with increasing the steroids is that there is a greater chance that the CMV will become positive again. Still the dosage of steroids given to Joe is still considered a relatively low dose. So we'll just keep praying and trusting that all will work as it should.

And finally, Joe's Miss Piggy feet. The edema seems to have gotten worse. Today Joe had a bit of pain in his right calf. Joe was given an ultrasound to rule out the possibility of a blood clot. Surprisingly, even people with very low platelet counts have been found to have blood clots. Then they are given medication to treat the clot, and lots of platelet transfusions. Sounds crazy, doesn't it? Fortunately, just as suspected, Joe's ultrasound showed no sign of clots.

We have another weekend off, and then back to the hospital on Monday. Monday marks our two year wedding anniversary, so I anticipate we'll receive all kinds of wonderful news regarding Joe's condition. I don't think that is asking too much!

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
~Romans 15:13

Round 5 - Complete

Joe has completed his 5th round of chemo!!!! He is more sore than usual, but that didn't keep him from putting in a few half days of work. Joe's counts are looking good, so continued praise for that!

On Thursday evening, Joe had the opportunity to spend time with Mammen. It was a great time for them hang out with out the annoyance of nagging girls...ok, ok. Without the nuisance of annoying ME! :)

Friday night we went to fellowship. This morning, we got to spend time with Joe's parents. They even brought over some yummies!

That's about it. On to prayer requests and praises!

***
Please pray for Baby Livi and family. They have been stuck in the hospital, because poor Livi got the flu. She is doing
better now, but she won't be discharged until she is off of oxygen for 24 hours. That hasn't quite happened yet.

Pray for Amy and family. Amy was diagnosed with AML around the same time Joe was diagnosed. Her journey has been rough, but she has such strength, and so much faith. Monday is her "Day Zero." She'll be going through a PBSC transplant, with her brother as her perfect match.

***
PRAISES!!!!!

Christine received news (As of Nov. 6) that she will be able to go HOME! She is the girl who had the risky partial-match transplant. She was on hospital grounds for 134 days at the time of her last update. I hope she is home now!

Thank you to Mammen for treating Joe to dinner! It was fun for him to get out of the house.

Marcus celebrated a birthday on Friday. HAPPY belated birthday!!!!!!!

And...the 12th is another SUPER SPECIAL day!!!!!! It is my In-loves' (I've discovered that sounds much better than In-laws....) anniversary! Such a beautiful couple. Happy happy anniversary Mamma and Dad!

And, a very HAPPY HAPPY BIRTHDAY to my MOMMY!!!!!! She's turning...uhm...39. :)

My mouth is filled with your praise, declaring your splendor all day long. But as for me, I will always have hope; I will praise you more and more.
~Psalm 71:8,14

Over the hump of Round 5

My Joseph is well into round 5, and he is again doing as well as can be expected. He's expecting the usual soreness and nausea, but as usual he's being a trooper. Joe's counts are all up a little this week, which is a good sign that the chemo is still working as it should.

The two of us are both more emotional lately than usual. The reality of what is and what is to come will just hit us individually at random moments. Fortunately, we're able to discuss all of our feelings openly which helps so very much.

No word yet on the four people who have gone for further testing. It doesn't look like we'll be getting any other people to test though. It sounds like several other potentials contacted declined to move forward for whatever reason. So after these four, we'll be moving towards transplant no matter what the results. As I've mentioned before, this is both a relief and a source of anxiety! In any case, we are strong. Joe is strong. And with the overwhelming support we have from all over, we will fight, fight, fight.

A lot of fun praises for this week!

A very HAPPY, but belated BIRTHDAY to my Big Uncle! He celebrated his birthday on Monday. Happy Birthday!

Happy 1st birthday to Gabe! Congratulations on your television debut Mr. Dinosaur! You are too cute.

And the 9th, is a very very special day. It is my cousin Yi-Ting's birthday! (Why yes...as a matter of fact, she is single. If interested, simply send your application and photo to me, my mom, or any other member of Yi-Ting's family. :) ) Yi-Ting and I have had lots of fun ever since we were young. Even though we only get to see each other every few years, when we get together, it's as if no time has passed. HAPPY BIRTHDAY, my dear cousin!!!!!!

And, the 9th is also a very special day because it is my parents' WEDDING ANNIVERSARY!!!!! (Isn't their wedding photo great?) HAPPY ANNIVERSARY MOM and DAD!!!! Thank you for being so wonderful and loving. You have been a HUGE blessing to us. If you see my parents, make sure to wish them a happy anniversary. :) (I think it's been 32 years...but don't quote me on that. :P)

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.
~John 14-27