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.

Day + 106

Today, I present to you a photo of Joe and his college roommate Jim. It was taken on our wedding day. Jim is really tall. And not that it matters, but that isn't what he wore to the wedding. Jim was just making sure he was in the right place. Speaking of Jim, Joe got a call from him four days into the Marrow Trek. Jim and Jesse are doing well, although they are starting to get some blisters on their feet. When Joe heard from them, they still had a good 3,000 miles to go...but they are still super excited. Now the dogs...they are excited too, but they are also falling asleep every time Jim and Jesse pause for more than half a second. The trail and the heat may be a bit much for them, so the dogs are going home for now. Meanwhile, Jim and Jesse seem to be collecting some crazy stories...already. Like having a small town librarian call the cops on them. You would be nervous too if two big guys with four days of chin stubble, who smelled like they had been hiking and sweating for a hundred miles in warm weather were sitting in your library. Fortunately, the cops were very kind...

Joe is doing very well. Monday's blood draw showed that he is now CMV negative. YAY!!!!!!! This means just one more dose of Cidofovir, which will take place next week. The down side is that Joe's WBC is still very low (yup, he had another filgrastim injection). Yesterday, Joe had bone marrow biopsy #7 to ensure that everything is as it should be in his marrow. We are praying hard that the results are good. Joe has been feeling a bit better each day now so it only makes sense that everything else follows. Amazingly enough, Joe had his biopsy without any morphine. Is he brave? Is he crazy? Is he stupid? Maybe a bit of all three? I don't know. But the fortunate thing is that the nurse practitioner who did the biopsy did a wonderful job. Out of the six different people who have had the privilege of doing a bone marrow biopsy on Joe, she ranked in the top two...oh, but one of the six was eliminated from the ranking since morphine was involved. :)

Another thing is that the Mepron (the yellow paint stuff) and Joe's stomach just were not agreeing. Joe has lost a lot of sleep in the last couple weeks because the Mepron has caused a lot of discomfort and rumbling and such. So...Joe is going back to the monthly Pentamidine. We are trusting that the techs who administer it are fully aware of the proper methods now. Please pray that this is true!

~~~
Thank you Sheena for bringing us food. It was all so yummy. You better be eating well too!!!!!

Praise the Lord, O my soul, and forget not all his benefits - who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's.
~Psalm 103:2-4

One Hundred Days!

Joe has officially hit Day +100. It has been 100 days since his PBSC transplant. It seems like just yesterday that our families were seated around a long table talking to Joe's doctor about the upcoming transplant. It was mentioned that Day +30 and Day +100 were big milestones. At the time, Day 100 seemed so very far away. And now we are here. Some days, when Joe was admitted to the hospital again, or while Joe was enduring the seemingly-never-ending-rash, each day seemed to pass SO VERY SLOWLY. Other days, we would look at each other and say, "wow! it's Friday already...again." The wonderful part about today is that the seemingly-never-ending-rash is barely visible now. Yes, there is a bit of redness here and there, but nothing even close to what it was. In fact, during the days of the seemingly-never-ending-rash, Joe would wake up in the morning and his face would look all hairy from the skin peeling on his head, eyelids, cheeks, chin...basically everywhere. Now, when Joe wakes up, he actually has some oil on his face. Remarkable. The doctors were really excited when they saw how much Joe's rash has faded. It feels as though we are rounding a corner and finally heading in the right direction. Hopefully we'll be encountering far fewer bumps along the way.

Joe had another dose of Cidofovir today. As of this past Monday he is still CMV positive, but that was expected. We're hoping next week, and each following one will be a CMV negative week! While Joe was hooked up to his IV pole, I decided to trek downstairs where there was a blood drive and get punctured with a giant needle. It was the least I could do after all Joe has been through. I felt really good afterwards, and then a couple hours later I felt like I had been run over by a truck. I gained even more respect than ever for Joe and all the other people we pray for each day. One pint of blood had me all woozy, and here Joe's counts have been low for months and months, and he has been poked with so many needles, big and small. Overall, I had a really positive experience and am really anxious to donate more regularly. Speaking of Joe's low counts, he did need another shot of filgrastim today. Fortunately, those needles are really tiny. Let's go counts, think UP!

Today is a monumental day for another reason. Jim and Jesse made their way down to the Mexican border today and will officially begin the Marrow Trek tomorrow. We are really excited about what they are doing, and so blessed by their energy and spirit. You can track their progress by clicking here. They will also be keeping a blog which they will update each time they encounter a computer! Please keep Jim and Jesse, and their beautiful dogs Whistler and Scooter in your prayers. Also a gigantic thank you to the people who have made pledges or donations to Marrow Trek so far. The support that has poured in for CLLF and Dana-Farber has been overwhelming. We are so amazed and encouraged by the generosity of both friends and strangers. Thank you.

Now for those curious minds who don't read Chinese, and saw my dad's comment the other day...Essentially, he was teasing me for writing such a lengthy blog and using a well known Chinese saying to equate my post to the cloths that were once used to bind the feet of women in China - long and smelly. Thanks dad, I love you too! :P

~~~
Thank you Cousin Lilly, Ben, Kristin, Alex, Lauren, and 1st Auntie & Uncle for the postcard!!!!! (Bet you didn't know that I just started teaching myself how to play ukulele and learning a song that mentions the humuhumu-nukunuku-a-pua‘a. I laugh every time I get to that word. So the postcard was perfect!)

Thank you Gordon & Julie for the food. It was so sweet of you. We appreciate it so much!

Thank you Nancy for sending such great photos. I can't stop looking at them. They are great.

Wait for the Lord; be strong and take heart and wait for the Lord
~Psalm 27:14

Ten ways YOU can help.

So often, when friends, families, and acquaintances learn about what we are going through, they want to know how they can help. Every so often, I like to post specific ways people can help. Although I know these posts can get long and tedious for some, I urge you to please read through the list. Everyone is different, and everyone has a different gift. I tried to take that into consideration as I compiled my list. Together, we can make a difference. We really can. And honestly, the best way you can help us is by helping others.

1. Pray. So many of you have been praying for us, and I cannot emphasize enough how much that has meant to us. I firmly believe that each of your prayers, happy vibes, and virtual hugs have kept us strong on days when we should have been weak, helped with the overall smoothness of Joe’s recovery process, and have all around enveloped us with the best of warm fuzzies. I would also challenge you to add one or two other people to your prayer list from our links to the left. Or go to Asians for Miracle Marrow Matches and pray for the patients there. There are too many people who are battling these awful cancers, and each one of them could benefit from the power of prayer.

2. Spread the Word. It is all about spreading awareness. We knew virtually nothing about bone marrow failure, blood cancers, and bone marrow transplants before our journey began. Now that we have been forced to come face to face with the awfulness of MDS, it has challenged us to arm ourselves with information so that we are able to educate others and promote awareness. Go out there and spread the word. Tell people about this list! Getting information directly from a human being can be much more effective than getting information from a flyer.

3. Register to be a Donor. If you are in good health and are between the ages of 18-60, you can register to be a donor. Registration is simple and doesn’t hurt. Just fill in some forms and swab your cheeks. Most people will never be called, but if you are – honey, you’ve won the lottery. What can be more fulfilling than an opportunity to save a life and be an answer to prayer. Click here to get started.

4. Pregnant? Make plans to donate cord blood. If you have already decided to make arrangements for personal storage, that is a personal decision and totally cool. If not, then the umbilical cord and placenta are commonly tossed after birth. Consider making arrangements to donate the blood. It could help save a life! If you will be giving birth in a hospital that is not affiliated with a cord blood bank (for example, Pittsburgh does not have a cord blood bank yet) you may call Cryobanks International, and visit their site for more information. The number is 1-800-869-8608. They accept donations from all over the U.S. You must register between the 28th and 35th week of your pregnancy. You can find more information here.

5. Donate blood and platelets. Patients with cancer often have to have multiple blood and platelet transfusions throughout the course of their battle. Donating blood and/or platelets is a wonderful way of helping to make sure they get the transfusions necessary. Look up your local blood bank or Red Cross for more information.

6. Support a charity.

• 
  Marrow Trek – Thursday, April 19, 2007 is Joe’s Day 100! Friday, April 20, 2007, Joe’s college roommate Jim and another college friend Jesse will be starting a 3,000 mile hike over 4 months. The purpose of their trip is to raise money for the Dana-Farber Cancer Institute and Cammy Lee Leukemia Foundation (CLLF), and raise awareness and sign up donors for the National Marrow Donor Program (NMDP). Amazingly enough, the pledges have already exceeded their goal of $15,000. However, Jim always hoped that the goal was a conservative amount. You can still donate. And you can be sure that every penny of your hard earned, tax-deductible donation will go straight to Dana-Farber Cancer Institute or CLLF. Visit the site for updates on their progress.
• 
  Aplastic Anemia & MDS International Foundation, Inc. – AA&MDSIF is a wonderful group that provides support to patients and does research related to treating and curing bone marrow diseases. The bravery bracelets that some of you have are from AAMDS!
• 
  Leukemia & Lymphoma Society – This is another group that funds education, research, and support. You may recall that our friend Louis ran a marathon to help raise money for the Leukemia & Lymphoma Society.

7. Knit, crochet, or sew. I know that there are many people out there who are crafty. Here are two organizations that are dedicated to turning craftiness into charity. Check out the pages for more information.
Project Linus - providing security through blankets.

Head Huggers - providing hats for those who have lost their hair due to chemotherapy or other medical situations.

8. Shop through iGive.com – For all you shoppers out there, you can shop at many of your favorite online stores through iGive.com. Go shopping, and a percentage of your purchase will go to the charity that you designate. CLLF, AA&MDSIF , and The Leukemia & Lymphoma Foundation are all charities that you can choose from.

9. Use GoodSearch.com to Surf the Web – Love to surf the web? If you use GoodSearch.com as your search engine, money will go to your designated cause. I know that you can choose AA&MDSIF as a charity.

10. Contact your congressperson. This message was in the most recent AA&MDSIF e-bulletin.

Dear Friend, On March 6, 2007, Representatives Jim McGovern (D-MA) and
Mary Bono (R-CA) introduced H.Con.Res. 81, the Bipartisan Bone Marrow Disease
Resolution, to encourage the federal government to fund research and engage in
public health initiatives that give patients greater access to more treatment
options and, ultimately, cures for bone marrow diseases.

The Aplastic Anemia & MDS International Foundation played a key role in drafting, presenting, and securing the introduction of this resolution before Congress.

Now it’s your turn to help!

For this resolution to pass, we need to have a broad level of support from individual Members of Congress. Now is the time to contact your U.S. Representative to urge them to cosponsor H.Con.Res. 81. If you do not know who your Representative is, or need contact information, please access [the U.S. House of Representatives site] and enter your zip code under the heading "Find Your Representative."

For your convenience, we have attached a sample script that you can use when you contact your Member of Congress.

Members of Congress do not cosponsor these types of resolutions unless they hear from their constituents. Spread the word and contact your elected Representative today!

Sincerely,

Sherrie Van Vliet

Acting Executive Director Click here for Script

If you have read this far, THANK YOU. I know for a fact that many of you have been doing your part to help as much as you can. How can we begin to thank you? I want you to know that every time we hear that someone has helped in some way, Joe and I literally jump up and down with joy. It is important that we make every effort to turn something negative into a giant positive for others. We are grateful for each one of you who is helping us with that effort!

You are the light of the world. A city on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before men, that they may see your good deeds and praise your Father in heaven.

~Matthew 5:14

Quick update.

Just a quick little update to let everyone know that Joe is still doing well! We went to see the doctor today, and Joe's steroids were tapered a bit more. His rash is very faint now and only itches a little bit at random moments. Not too bad. Joe's WBC is still low, so there was another filgrastim injection today. That's about it. We return to the hospital on Thursday for Cidofovir. That will be a pretty long day. Tune in tomorrow. It has been awhile since I have blogged about ways to help. I'm making a list, so be prepared. :)

Please pray for all the students, faculty, and families affected by the tragic events at Virginia Tech.

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

Day +93

Joe received his first dose of Cidofovir today. This means I can share more factual information on how it is administered, unlike yesterday. :) Joe was given fluid (Saline) over three hours, and some Probenecid. After that, the Cidofovir ran over one hour. Then Joe was given more fluid over two hours. Then some more Probenecid...and then he was to take one more dose of Probenecid six hours after the second dose. Such a complicated drug. And unlike what we thought yesterday, each Thursday will be the same routine. It wasn't so bad - says me, the girl who wasn't hooked up to an IV pole for six hours. The huge blessing of today was that Joe's rash looked even better than it did yesterday, and it was even less itchy. This made hanging out at the hospital less miserable. Coming out from the agony of constant itchy, dry, rashy skin makes everything seem more pleasant! Joe definitely is looking brighter and has renewed energy to fight this stupid MDS stuff.

Tomorrow we go back to the BMT office for another blood draw and rash assessment. We're hoping for a taper in the steroids soon. As mentioned before, a high dose of steroids makes it very difficult to treat CMV. A high dose of steroids can also mask infection by inhibiting the ability to get a fever. Infection is increased when WBC (and neutrophils and lymphocytes) are low as they have been with Joe. Surely Joe won't develop any infections, but we need to be prepared for the possibility so we know what to look for.

Thank you for continued prayers, good vibes, virtual germ-free hugs and kisses, and warm fuzzies!

~~~~
Happy happy birthday Rachel U. We love you!!!!!!

The Lord you God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.
~Zephaniah 3:15

The evil temptress is back...

Today we learned that the evil temptress Ms. CMV is back. We were prepared to see her again, but we were really hoping she would stay away. Oh well, as the doctor said, "don't be discouraged. This is treatable." Since Mr. Ganciclovir proved ineffective last time, and Mr. Foscarnet made Joe pay heftily to get rid of Ms. CMV, Mr. Cidofovir is intervening this time. I like to call him Mr. Sudokuvir...but anyway...

We will go to the hospital tomorrow. Joe will receive fluids for three hours. Cidofovir will be infused over 2 hours. Then there will be an additional two hours of something, but we're not so clear on what yet. :) I will have to report back! Cidofovir only needs to be given once a week, and apparently the very first treatment is much longer than the ones that follow. So tomorrow is a long day, but next Thursday should be a bit better. So far the plan is two Thursdays of Cidofovir, then a week off, and another Thursday of Cidofovir. Hopefully by then Joe will test negative for CMV. If not, he'll continue to get Cidofovir every other week.

Today Joe tried something new. It's called Mepron. It looks like bright yellow paint, or maybe French's classic yellow mustard. Apparently it tastes like fruity plastic. It is used to prevent pneumonia. Originally Joe was given Bactrim when his counts started to rise post-transplant. When Joe's counts started to drop, he was taken off the Bactrim and given a Pentamidine, which is inhaled. The Pentamidine is a monthly treatment. Unfortunately, it was discovered that those in the hospital responsible for administering Pentamidine weren't exactly doing it correctly. This understandably made Joe's doctor nervous. So Joe was given a prescription for Mepron. You have to take it once daily, and it is much worse than swallowing pills. Joe is convinced the doctors enjoy coming up with new ways to torture him! However, the upside is that the drug comes with these directions: TAKE THIS MEDICINE WITH MEALS. If possible, include foods with a high fat content (whole milk, cheese, ice cream, eggs, fried foods). Joe is especially happy to have a proper excuse to eat ice cream!

Some more good news. Joe's rash looks significantly better today, and he isn't shedding as much skin either. I'm praying he is able to get a good night sleep, since tomorrow will be along day. Joe's parents kindly brought over an oven-ready meal for us so that we don't have to worry about dinner tomorrow.

He will wipe away every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.
~Revelation 21:4

Day +91

Photos make blogs more fun. Today, I didn't have a good photo to post, so I dug up a silly and random photo from the past especially for your entertainment.

We went to the hospital today, and aren't due to go back until Friday. Joe's rash - the main issue we've been focusing on for quite some time now - seriously seems to be getting better now. Although, it is still pretty severe. Joe is being kept on the same amount of steroids for now. The doctor fears that tapering too soon will cause the GVHD to flare up again. If that were to happen, the doctors would look to other drugs for treatment. In fact, even if Joe's rash continues as is for too long, other treatment options may be implemented - and they don't sound like fun. So please, let's pray that the rash stays in control, and in fact, continues to get better. We are indeed grateful for some GVHD, and we are very thankful that the GVHD has limited itself to the skin, but I think that it has worn out its welcome. I'm sure Joe would be quick to agree.

Other than that, and the fact that Joe constantly looks like he has an atrocious case of dandruff (despite having very few hairs) Joe is doing well. All of that hemorrhagic cystitis business has gone away, Joe's feet and ankles are back to looking svelte, and I'm seeing more of his smile!

Oh yes, Joe's blood draw. His WBC was a whopping 0.8 k/mcL (normal range= [4.4-11.0] k/mcL.) So Joe had another Neupogen (filgrastim) injection today. The lowness of the count may be connected to GVHD. It also could be due to a relapse - although everyone is pretty confident that is not the case. Just two weeks ago, Joe's chimerism test showed 99% donor. He did get another chimerism draw today, so we'll find out later this week how female Joe is now. Think 100%! On the positive side, Joe's hemoglobin continues to be good, and his platelets keep creeping up ve-ry sl-ow-ly.

One more thing. Over the weekend, Joe did a lot of sleeping. The thing is, most of his sleep happened during the day. The steroids seemed to work their magic at night when most people are sleeping peacefully and dreaming of vacationing in Fiji. Yeah, when he should have been sleeping, Joe was unable to. Not having to go to the hospital made it that much easier for Joe to sleep straight through the morning. I kept joking that I needed to ship him to Taiwan where the time difference would make his sleeping pattern normal! Thankfully, Joe fell asleep at a regular hour last night, so I think I might be able to keep him in the States for a bit longer.
~~~
Happy happy belated birthday to Shelley!!!!!!! Hope you had fun celebrating your Easter birthday.

I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the Lord.
~Psalm 40:1-3

Lovely Easter weekend.

Joe and I had a lovely Easter weekend. We were granted permission to stay away from the hospital from Friday through Monday. So, a nice four day weekend! Actually, it wasn't all nice for Joe. For much of the weekend, his rash continued to be pretty unbearable. Imagine going to Fiji...and returning with a sunburn...and then having your sunburn peel. Well, for Joe it has been no Fiji (except in his head), and just constant sunburn and peeling. Day in and day out. I realize I'm starting to sound like a broken record, describing Joe's rash. However, for now, each day revolves around Joe's rash. For the greater part of the day, Joe is applying lotion to every inch of his body. Thankfully, the rash did appear to get better minutely each day. We are hopeful that it is getting better anyway, and Joe seems to be tolerating it better. The good news, is that his CMV test from Thursday was negative once again!!!!!! We'll see what Tuesday's test shows. We're aiming for another negative!

On Saturday, we got to see my parents and brother in the early afternoon. My parents had borrowed my camera for awhile, and returned it with lots of family photos from their recent trip to Taiwan. My dad also shared photos that my aunt and uncle compiled of my grandmother. I'm sharing some of my favorite photos from the whole bunch! The first makes me laugh, and laugh, and laugh. It is my grandpa striking a pose, and my dad holding my grandpa's collection of sunglasses. Perhaps my dad gets his silliness from his dad? The next is my grandpa posing with most of my sweet cousins on my dad's side of the family. They are so grown up from the last time I saw most of them. The last two photos are from the "Archives." One, of my grandparents having fun and not looking like they were in their 80s. The last photo is of my grandma with one of her famous flower arrangements. I am so thankful for the blessing of photos, and the blessing of memories.

Early Saturday evening, we were blessed by a visit from Uncle & Auntie Yang, and Joe's parents. Uncle & Auntie Yang are Joe's New Jersey parents. Lucky for me, I've been adopted by them too. Auntie Yang is the kind of angel who is always prepared for guests. Even if you call her two seconds before ringing the doorbell, she will have a table full of food ready for you. Uncle Yang is the kind of guy who always has hilarious stories to tell. He also loves to sing and helped serenade us at our wedding reception! So you see, they were really special guests, and it was wonderful to see them.

The rest of the weekend was spent coloring Easter eggs, relaxing, and singing...

Ev'ry morning is Easter morning from now on! Ev'ry day's resurrection day, the past is over and gone!

1.Good-bye guilt, good-bye fear, good riddance! Hello, Lord, Hello, sun! I am one of the Easter People! My new life has begun!

Ev'ry morning is Easter morning from now on! Ev'ry day's resurrection day, the past is over and gone!

2.Daily news is so bad it seems the Good News seldom gets heard. Get it straight from the Easter People! God's in charge spread the word!

Ev'ry morning is Easter morning from now on! Ev'ry day's resurrection day, the past is over and gone!

3.Yesterday I was bored and lonely; But today look and see! I belong to the Easter People! Life's exciting to me!

Ev'ry morning is Easter morning from now on! Ev'ry day's resurrection day, the past is over and gone! Ev'ry morning is Easter morning, Ev'ry morning is Easter morning, Ev'ry morning is Easter morning, From now on!

Words & Tune: Richard K. Avery and Donald S. Marsh, in the Avery and Marsh
Songbook, ©1967, Hope Publishing Co.

*grin* So all in all, it really was a lovely weekend. Now if we can just rid Joe of his rash!
~~~
Thank you so much to Uncle & Auntie Yang for coming to visit! Wish we could have spent more time together. Thank you also for the very generous gift.

Thank you to...
My Monroeville parents,
Ben & Eleanor Chan
Sherry, Tim, Tyler, & Noah
My Auntie & Uncle Wu
Dr. & Mrs. Drozdiak
Auntie S.B. & Uncle R.C.
Taiwanese Bible Class
Auntie and Uncle Chang
John & Donna Smith (A.M. & A.D.!)
Sue-Mei Wu
TC and Yuen Ching Chan
Tian-min and Hsueh-man Lin
Gretchen Allen
Paula Good...
for all of the love you sent my parent's way after my Grandma passed away. Your love and support was extremely appreciated.

Your attitude should be the same as that of Christ Jesus:
Who, being in very nature God, did not consider equality with God something to be grasped, but made himself nothing, taking the very nature of a servant, being made in human likeness. And being found in appearance as a man, he humbled himself and became obedient to death - even death on a cross! Therefore God exalted him to the highest place and gave him the name that is above every name, that at the name of Jesus every knee should bow, in heaven and on earth and under the earth, and every tongue confess that Jesus Christ is Lord, to the glory of God the Father.
~Philippians 2:5-11

Peanuts

I'm not quite sure why, but Joe seems to always make me think of the Peanuts gang. I always used to call him Joe cool - because his name is Joe, and well, he's cool! Confession: We are even dorky enough to own matching Joe cool hoodies...but only because they were less than $5 each!

More recently, Joe's bald head started sprouting hairs. But not very many. So I would tease him and say he looked like Charlie Brown. Things had been so miserable for Joe lately too, with his unbearable rash that just wouldn't go away. Kinda gave him that woeful expression Charlie Brown always seems to have on his face.

Then today, Joe received a new identity. Our pastor surprised us by showing up at the door with an Easter basket! Unfortunately, Joe was asleep, but I was able to get Pastor Jim caught up on the latest news. Mainly we discussed Joe's ongoing rash that still won't go away, and his tendency to leave Joe dust everywhere he goes. Pastor Jim said, "like Pigpen!" And I said, "exactly!" And it's funny, because Joe actually likes to tease me and call me Pigpen. (Yeah, I'm not sure why either...really...) I think he must agree that he is now much more deserving of the title. What seals the deal is that even though his rash is still pretty unbearable, Joe is feeling much more hopeful now. So the woeful look is diminishing and the smile is returning. To top that off, Joe is growing even more hairs on his head. From far away he still looks bald, but get a little closer, and you will see that Joe indeed has several patches of hair sprouting from his head.

Gotta love the Peanuts gang!

Thank you Pastor Jim for the wonderfully fun Easter basket. Joe and I are currently suffering from a major sugar high!

Happy Birthday Jian! Hope you had a fun celebration!


Charlie Brown: Everything seems hopeless... I'm completely depressed.
Lucy: Go home. And eat a jelly-bread sandwich folded over. Five cents please. (Charlie Brown leaves. Lucy puts her feet up.) There are some cures you don't learn in medical school.

Violet: Pig-Pen, you're an absolute disgrace! All that dirt and dust... you could be a germ carrier. Did you ever stop to think of that?
Pigpen: So what if I am? Even germs get tired of walking now and then!

Charlie Brown: Well Snoopy, what are your plans for today?
Snoopy: Plans? I hadn't even thought about it. But I suppose I'll sleep a little this morning. Then this afternoon I'll take a short nap and later on I'll try to get some more sleep. Those are good plans!
~Taken from "I told you so, you blockhead! (Peanuts Treasury)" by Charles M. Schulz.

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!

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