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

Vacation!

On Friday afternoon, we received wonderful news! Joe got the whole weekend away from the hospital. YAY!!!!!! Overall, everything is getting better and better. Now the symptoms and side affects are more of a nuisance than anything else. Tomorrow we return to the hospital. Hopefully, Joe's counts will start to rise this week (they have been dropping - most likely due to the Vidaza.) and everything else will contine to be better.

Albert was in town for a few days. He came and hung out with us on Thursday evening. Then from Friday until today, we all vacationed at Hotel Mom & Dad. It was really nice. Plus, Victor came into town yesterday, so we were able to spend some time with him as well.

Yesterday, Joe took full advantage of not having to go to the hospital. He slept until close to 11am. Then after a late breakfast, he went back to sleep for a few more hours! I'm so glad that he was able to enjoy some true rest!

That's all for today. Thank you for all of your love and prayers!

Thank you A.M & A.D for the cards!!!!! You are too sweet.

A very Happy Birthday to my 2nd uncle who is now able to ride the speed train in Taiwan for half price!!!!!!

Also, a very Happy Birthday to Pastor Jim, Eric W., Bryan, and Bethie!!!!!!!!!!

Oh dear...

After thinking for a bit, I fear that I may be the reason that Joe is in the hospital. Just last week, I mentioned that I was craving a Pittsburgh Grilled Chicken Salad from the hospital Friendship Cafe. Of course, I didn't know when I'd get one, since Joe and I have been eating lunch at home - even on hospital days. Alas, yesterday, I was able to get my salad. But I didn't want it to be because Joe was admitted back to the hospital! So is this indirectly my fault? Nah.....

Joe continues to be doing well. Tests for CMV are drawn every Monday and Thursday. So tomorrow Joe will be tested again. The doctor said that he anticipates that the results will still be positive - although if it is negative, the doctor will celebrate with Joe! The doctor is also quite confident that by Monday, the test will be negative. Both CMV, and the Ganciclovir used to treat it cause neutropenia, so Joe's counts have been dipping. Treating Joe is really an art blended with science. Everything needs to be balanced. When the doctor was explaining things, it was like reading a "Choose Your Own Adventure" book. If "this" goes down to "this" than we'll need to do "this." But if "this" happens, we do "this." I'm just glad that the doctors are experienced and confident. Not to mention that ultimately, God is in control. *whew*

In other news, the shower in Joe's room was only spraying freezing cold water this afternoon, but it was quickly fixed. Yay! Joe's appetite has been great. So great that the hospital food actually seems appetizing. And, Mint Mojito is a pretty fun flavor of Orbit gum!

Since it has been requested, here is the link if you'd like to send cards to Joe while he is incarcerated...
WPAHS E-Card
He is back at West Penn Hospital, and for now he is in N-612.

Home Sweet Home.

We are HOME! Joe has been enjoying his tv, his couch, his bed, and his shower. There is no doubt that we were extremely well taken care of at Hotel Mom & Dad. Joe's parents were absolute angels and helped us more than we could ever hope or ask. But it sure does feel good to be back home. My family and Joe's parents all stopped by in the afternoon to make sure we were okay, and to make sure that our refrigerator was stocked to maximum capacity. We are very loved.

Our visit to the hospital this morning provided us with very good news, again! Joe's WBC is now 2700. Jumping, jumping, jumping. His platelets rose to 72, and his RBC went up to 10.6. We are quite pleased with those numbers. Twelve more days until Day 30 and the big bone marrow biopsy.

Joe and I wanted to share some photos from these past few weeks. Rest assured that every single one, good and bad (okay, not so bad!), has been pre-approved by Joe. It is really amazing how big his smile is in so many of the photos. He's a beautiful person with beautiful character. You can view the photos by clicking on the following link...

Joe's Transplant Process.










As for the photos of the cute little guy I've posted... Well, that's my little brother Victor. And on the 29th, he is turning TWENTY-ONE!!!!!! Yup, he's all grown up now. He also happens to be an extremely bright goody-two-shoes. So it is highly unlikely that he will be taking advantage of any of the things that are now legal for him. Maybe because in every card that he has ever received from us, Joe has written, "Just Say NO." :)

HAPPY BIRTHDAY VICTOR!!!!!!

Movin' on up!

Today marks two weeks since Joe's transplant. He has been feeling fatigued, but things are slowly getting better and better. Today was a good day for counts. Joe's platelets are now 66. His WBC jumped up from the 60s to 166. And his hemoglobin is 10.2. The doctor said that his platelets should continue to rise, his WBC should start jumping up, and it is pretty definite Joe will be able to avoid getting any blood transfusions! Yippeeeeee!!!!! It is amazing how well Joe has been doing through the whole transplant process. God continues to bless us beyond measure.

Joe's temperature started to creep up last night. It went up to 99.9. This morning it was 99.6. Also, the area around Joe's port has been a bit tender. There has been no swelling or pus. Just to be on the safe side and to avoid any surprise admissions due to fever, which is a sign of infection, which means several days and nights in the hospital - Joe was given Vancomycin today. If you recall, this is the stuff that causes red man syndrome. Joe didn't have as strong of a reaction today as he did back in August. But this time, with no hair he did look a bit like the red version of a Blue Man from the Blue Man Group. All is well now. Joe is just more tired than ever because he got some Benadryl to help with the itching from the Vanco.

Once I get back to my normal computer, I'll start sharing photos from these past couple weeks. :) As always thanks for all of the love.

New Man

My husband is a new man! Yesterday, he went from looking like this, to looking like this, to looking like this. Just as Gretchen says, "bald is beautiful." Joe looks as handsome as ever. My mother said, "so now you have a sexy, bald, husband?" Joe's mom likes to joke that I'm caring for a baby...with a 21 year old mom. Joe says he now knows what it is like to be an old old man. He has no hair. He shuffles from the bed, to the restroom, to the hospital, and back again. Reading is his main source of entertainment. His diet consists of Ensure, popsicles, Jell-o, and millions of pills. Although, Joe's mouth sores started getting better today. Yay! Joe's platelets continue to rise little by little. His WBC look like they are creeping up as well. So things are going as well as they could be. Tomorrow will make 2 weeks since the transplant.

I must share the story of Joe's hair. He started off the day with a full head of hair. During his visit to the hospital, Joe was really fascinated by how easy it was to pull out his hair. Joe jumps in the shower after every hospital visit. Yesterday afternoon when he started washing his hair, it all started falling out. When Joe stepped out he had big bald patches on the front of his head.

In the evening, Joe's dad had requested that I make some chili. Joe LOVES chili, but unfortunately he couldn't eat any with his mouth sores. So while I had chili with my in-loves, Joe found a way to entertain himself. He went to the bathroom and started yanking out all of his hair. He figured this was better than leaving trails of hair everywhere and waiting for it to all fall out on its own. After dinner, I went to help. It was actually really funny in a weird kind of way. So by the end of the evening, Joe was officially bald!

That is about it. We are really encouraged by his progress, and just keep praying that all continues to go smoothly. Praise the Lord!

Uh-oh...:)

It may be starting. Joe just might be losing his hair. Maybe. Yesterday, before and after his post-hospital-visit shower, I noticed all of these loose hairs on Joe. We then discovered that of all places, Joe was starting to lose hair from his armpits! It was just sliding right out. Joe then decided to test the hair on his head. That stuff is much more stubborn, and yet Joe was still able to pull out tiny little tufts of hair. We buzzed Joe's hair yesterday afternoon since it was getting really shaggy. Joe is really fascinated by the prospect of becoming completely bald. He seems to be encouraging it by randomly yanking at the little hairs on his head. Still, it looks pretty thick up there. Today, there were fewer loose hairs. We thought maybe he would wake up to a pillow covered with hair, but that hasn't happened yet. There was just one lonely hair, possibly two! We shall wait and see.

Joe's nausea and belly pain has pretty much vanished. To replace those ailments, Joe now has a very stubborn headache that appears throughout the day. Also, he is starting to develop sores in his mouth that are irritating. The one positive thing that has resulted from the mouth sores is that Joe has an excuse to eat popsicles. His nurse suggested it this afternoon, and Joe was very excited about it! Another praise worthy thing is that even though Joe's last platelet transfusion was a bit of a nightmare, his counts went up! Yesterday it was 40, today it was 45. Joe's hemoglobin level is steadil decreasing, and we're anticipating a blood transfusion within the next week.

Some happy news about one of the girls we've been praying for. Amy is more than sixty days out from her transplant, and her thirty day bone marrow biopsy showed that she is 100% engrafted. Woohoo, and Praise the Lord! Also, pray for Alivia and her family as she will be undergoing a splenectomy in a few days, and a transplant a few weeks after that.

A very Happy Birthday to John of John & Carole, TK, and Kelly from small group who celebrated birthdays recently. And a very Happy Birthday to SuAnn who should be celebrating today!

Thank you so much Janet & Frank, and Aunt Vivian, Zim, & Yim for your generous gifts. You are all so very thoughtful and sweet.

Thank you to all the wonderful people who have been flooding our mailbox with cards! We really appreciate your support.

And a super giant THANK YOU to Greg who is absolutely the best neighbor in the world. If there is such thing as a best neighbor award, he should get it. Greg, you have been so incredibly helpful, we appreciate it more than you'll ever know.