Wishing everyone a blessed Christmas.

I hope and pray that everyone has a peaceful and blessed Christmas this year. It has been a bittersweet Christmas for me and my family. Three family members were added to our band of guardian angels this year. We continue to feel a mix of joy and sadness, peace and unrest. It is difficult too at this joyous time of year to run into old friends and acquaintances and answer their giddy, cheerful, honest questions with the sobering truth. I tend to feel more sorry for them than myself, since I have been preparing myself for these encounters, and they are being caught unaware.

I think back to last year, and remember how perfect Christmas felt despite what we all knew loomed before us. I'm so thankful that we were able to share that special time together. It was beautiful, and I will cherish that memory always.

Thank you to everyone who has sent cards, gifts, and well wishes my way. For the first time in years, I didn't send any Christmas cards. I hope that everyone knows that despite this, you are all in my heart. Though it has been a tough year, I don't think I've lost sight of all that I have to be thankful for. I've seen churches, families, and friends draw together to express support towards me and my family. It has been beautiful, encouraging, and inspiring. I hope and pray that in the coming months I can better show my appreciation to everyone who has helped carry us through this difficult year. I really do love all of you. Even if you happened upon this blog by accident and haven't a clue who I am, I love you for caring enough to read.

The prayer of my heart is that no matter what you are going through or experiencing this year, be it overwhelming joy or heartbreaking sadness, you are able to have a peaceful and blessed Christmas. I pray that you are able to feel loved. I pray that you feel the capacity to love. I pray that you are able to feel thankfulness in your heart - even if it's for something silly like striped socks. I pray that the stories of amazing people like, Joe, Amy Wilhoite, and Baby Livi will continue to touch you and encourage you in the next year to cherish every minute and live for each moment. I pray that you will know that even having petty arguments with a family member, or cleaning up another spill, or waking up to a crying child is a blessing because it means that you are still able to have the privilege of spending time with a loved one. I pray that you are able to feel the desire to be more kind, more sensitive, and less judgemental to those around you. None of us ever truly knows another persons full story. I pray that you will know when to be selfless and when to be a little selfish. I pray that even if it seems impossible, that you know that God loves you. I pray that you are still able to be touched by the beauty of Jesus' birth. These things I also pray for myself.

And because I believe that Joe is still with us in spirit, and it's important to find reasons to smile. For a limited time only...something fun that everyone and their pet ferret has fiddled with. (It still makes me smile every time!)

Click here. Merry Christmas!

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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

99%

Three lovely photos have been posted for your entertainment. First, we have Joe smiling because his mind is far away from the Mepron he will soon be taking. The second is a photo of the Mepron. Didn't I tell you that it looks like bright yellow paint? The third photo needs little or no explanation - but it is Joe's reaction to taking Mepron. Apparently though, things could be worse. Poor Baby Livi has to take a medication that smells like skunk.

We went to see the doctor yesterday. Joe's rash is definitely looking better and better each day. He is not shedding as much skin, and his skin is not as red. Joe was given permission to taper his steroids slightly. Today was the first day of the taper; so far so good.

The results from the chimerism test earlier in the week show that Joe is 99% female. Yay! Those donor cells are doing just what they are supposed to be doing. The fact that they are doing what they are supposed to be doing largely contributes to why Joe's rash was so ugly. High price to pay, but in the end it should all prove to have been worth it.


Joe got another Neupogen shot on Friday because his WBC are still stubbornly low. The positive CMV result isn't helping either. Praise God though, because Joe is feeling well overall. Monday we return to the hospital. Mostly just a routine check. Thursday will be round two of the Cidofovir.
~~~
I keep forgetting...thank you Susan H. for the lovely card! It was really fun to read.

Great is the Lord, and most worthy of praise, in city of our God, his holy mountain. ~Psalm 48:1

New Day, New Week

The last few weeks have been rough. So many things seemed to happen at once. Just one unhappy event would have been managable. But it felt like we were being flooded with unhappy events. Add to that the fact that Joe was rightfully feeling sick of being sick. I was feeling helpless and useless. And even more, I was being haunted with the belief (which I'm sure was mostly imagined) that people just weren't understanding how tough things have been for Joe. I felt that his extreme positivity was masking the fact that it is not easy going through what he is going through. Not easy to feel less than 100% for months on end. Not easy to get a piece of hopeful news and then 3 pieces of not so hopeful news. Not easy to feel isolated from your friends and tell them that no...this week isn't a good week to visit, and neither is next week. I had these visions of people wondering why we are being so anti-social and overprotective, thinking that we're probably sitting at home day by day enjoying an extended vacation from life. Joe really does do a grand job of creating the illusion that getting diagnosed with high-grade MDS and going through a PBSC transplant is easy peasy. But while this has always made me so extremely proud of him, these past couple of weeks it made me sad. I felt this desire to shout and scream and say, "do you really, really, really, understand all that Joe is going through? Can you truly fathom the idea that he is only making it look easy?" I think it is natural to have emotional periods like this when experiencing tough times. Or maybe, I'm just crazy!

Well nevermind, because this is a new day, a new week, and we are both feeling renewed and ready to exude extreme positivity once again! Today was Joe's last dose of Vidaza. He received a quarter dose of what he was receiving pre-transplant. It was administered across five days through a 20 minute IV. Despite getting Zofran prior to the chemo, Joe has experienced bouts of nausea and decreased appetite these past few days. Hopefully the Vidaza will suppress Joe's cells, and the donor cells will be able to more effectively take over. Joe will be getting bone marrow biopsy #7 in about 25 days to see what is happening. We are also praying that Joe's appetite returns, and the nausea goes away now that his Vidaza treatment has ended.

So far Joe has gotten two negative CMV results. Hurray! Tomorrow we'll have the results from today's draw, and we just know it will be negative as well. Then Joe will receive Foscarnet once a day until he gets three more negative CMV results. We are hoping and praying and hoping and praying that after the next three negatives, his hospital visits will be tapered.

Joe's skin continues to peel. This just means that the rash from the GVHD is healing. It is a sight to behold. Combined with his swollen and also peeling eyes, Joe looks a little bit like a snake. Joe humors me by hissing. Joe also likes to remark that his skin is simply peeling from the sunburn he got while we were in Fiji (remember, the trip to Fiji was in Joe's head!) Then there is the nurse who said, "You're simply a-peeling (appealing)! I'm sure your wife tells you that all the time." You gotta laugh, you gotta groan.

Things are definitely looking up. :)

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Now for prayer requests.

* Please continue to pray for Baby Livi. She is 9 days out from her transplant, and she is just amazing. This week she turns two. Hospitals are not a fun place to celebrate a birthday. Fortunately, she has an extremely wonderful family.

*Continued prayers for Amy W. She just finished another round of chemo, more than 100 days post-transplant. At the end of the month, she'll be receiving a booster of stem cells from her brother.

* Also pray for Amy Katz. She has an army of people behind her raising money and holding bone marrow drives. They've added over 7000 people to the registry, and found donors for 13 people. Yet after 4 years, Amy is still searching for her perfect match.

Which brings us to the next announcement...(come on, stay with me here. i'm on a roll!)
Amy's Army is holding another bone marrow drive on

March 27th, 2007
7am - 7pm
Wintergarden in PPG Place
Downtown Pittsburgh
(You can download the forms necessary and fill them out in advance to make registration faster. Amy's Army)

All fees are covered by Amy's Army and the HLA registry. Please, please, please (yes, I realize I'm begging) if you are in the Pittsburgh area and you have not yet registered to be a donor, consider signing up on March 27. So many people approached us about signing up for the registry when Joe was diagnosed. I know many were discouraged when they discovered that the drives we held were minority-based. Well, NOW IS YOUR CHANCE TO REGISTER! It is an absolute miracle that Joe was able to find a donor within 6 months, especially since he is Asian. We are so blessed that a girl of 21 was brave enough to give Joe a chance at a longer life. Amy Katz has been waiting for years! Imagine that it is your child, parent, spouse, or sibling who needs a transplant. This is the opportunity to give the gift of life. Most people register and will never get called. If you do get called, don't think of the needles and other fears, think, "Wow! I've won the lottery! I've been given the privilege of being able to help another person - another family."

If you are in the area and have already registered, are not between 18-60, or are unable to register due to health reasons, consider helping another way. SPREAD THE WORD!!!! On the Amy's Army site you can download fliers or send emails with all of the information necessary. Amy's site also has information for those interested in volunteering for the day.

Finally, there is an Amy's Army Benefit Concert

Sunday, March 25, 2007
4pm-11pm
Hard Rock Cafe
Station Square, Pgh, PA

Cost: $10.00 donation.

Events like these are what make it possible for Amy's Army to hold bone marrow drives and defer costs. Many people aren't keen on spending $52+ to register, but $10.00 for a concert that will help defer costs for others sounds fair, right?

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Last but not least, thank you, thank you, thank you to
A.M. & A.D.
April & Paul
Auntie KT
Auntie SB & Uncle RC
Beth and Dave
Brian
Caryn
Cousin Van
GLA
Greg
Joanna
Lauren
Lih Jen
Lilly P.
Lou Ann
Neysa
Pastor Jim
PCC "head honchos"
PM
Sheena
Shelley
Sara and
Tina

for the encouragement you provided for us this past couple of weeks. It meant so much to us, and we really appreciate it! Thank you to everyone for continued prayers through all of our ups and downs. This would all be so much more difficult if we didn't have the support that we do. God bless!

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings because we know that suffering produces perserverance; perserverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.
~Romans 5:1-5

Home!

Joe was supposed to stay at the hospital until at least Monday or Tuesday. However, once again, his good behavior has paid off! Even though Joe is still CMV positive, there is evidence that he is definitely responding to the treatment. Add that to the fact that he is a doctor and an extremely compliant patient, and the outcome is home sweet home! Of course Joe has to go back to the hospital every single day again. But this is far better than spending restless nights at the hospital. The nurses mean well, but they were entering the room every hour or two, and flipping on the super bright lights without warning. Not so fun. So the plan is that Joe returns each morning for his first dose of Ganciclovir. Then a visiting nurse will come to our home in the evenings for the second dose. Hopefully by Monday, Joe will test negative, and then he'll just get one dose a day at the hospital. Thank you everyone for all of your prayers, love, and cards!

Now if you can please send a bunch of prayers to Amy and her family. They can use every prayer they can get right now. No, we do not know Amy or her family personally. Chances are, they don't have any idea who we are. But ever since her blog was shared with us, she has been in our prayers. She is a young lady of amazing strength and faith. We have learned a lot from her, and been inspired by her. Just pray, pray, pray!

Also pray for Baby Livi and family. She'll be starting her transplant procedure next week. That little girl is such a trooper. Not to mention she is too cute for words.

Thank you, thank you, thank you!

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.

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