Day +117

Thursday, Joe and I went back to the hospital for his third round of Cidofovir. If Joe is CMV negative on Monday, then we party! If he is still positive, then there is talk of giving him Ganciclovir and Cidofovir. There is a hope that the two together might effectively take care of the CMV.

Thursday, we knew would be a long day. The whole Cidofovir process takes 6 hours. (Joe also got platelets again, but that was relatively quick.)In the past, we usually went home around 2 or 3 in the afternoon. But last week was the Week of Waiting; we went home at 7pm. Still, we are blessed that Joe is able to go home. (Dear Baby Livi and her mom have been living at the hospital since her transplant two months ago.) Not only that, but we were blessed by a visit from our dear friend Sheena. You might remember that when Joe was admitted to the hospital shortly after being diagnosed, Sheena let me stay at her place many nights so that I wouldn't be as far from the hospital. Sheena started attending our church and fellowship the same time that Joe and I did. In the past four years she has become such a good friend. Unfortunately for us, she is finishing up dental school and leaving Pittsburgh this week. We're going to miss her so much!!!!!! Sheena has such a huge heart, and she is also just about as silly as I am. Actually, she may even be sillier. In any case, she made our long day at the hospital on Thursday feel much shorter. Thanks Sheena!!!!

Since Thursday, we have had a bit of a break from the hospital. Unfortunately, also since Thursday, Joe's rash has become increasingly worse. On Saturday, after a call to the doctor, Joe was put back on Cellcept - the immunosuppresant that was stopped when we first learned Joe's graft had dropped. This whole treatment process is so crazy. Lower the steroids and immunosuppresants and the GVHD starts to flare. Increase the meds and Joe's CMV becomes positive again. Then there is the chemo which initially lowers blood counts that are already low. Crazy.

When Joe starts to scratch he always gets a lecture from me...or a little slap on the wrist. This time around though, he is getting pretty smart. Joe will seemingly vanish into thin air, and the house will become very quiet. Then he will emerge again, looking a bit sheepish and with some patches of especially red skin. Very suspicious...

Our friend Sha invited me to go to the symphony with her on Saturday evening. I almost declined. I'm not with Joe all the time. But I am with him most of the time. Up until last night, all of my excursions were either during the day or they were only a very short distance from home. What can I say? I'm an overprotective wife. But Joe convinced me that he would be fine and that I should get out of the house - not only for my own sanity, but so that nice friends like Sha still love us once Joe is well enough to be out and about! Well, I had a wonderful time with Sha. It was a really fun night of music. Plus, I got to see my Uncle Kao. When I got home in the evening, I reenacted the whole experience for Joe. I'm not sure that the conductor or the musicians would appreciate my impressions, but Joe seemed to get a kick out of it. :)

We go back to the hospital in the morning. I'll keep everyone updated. Speaking of updates, check marrowtrek.org sometime this week. Jim & Jesse should be putting up an update on their progress soon!

~~~~
ANNOUNCEMENT

If you look at our links to the left, you will see that one of the girls in our prayers is named Kailee Wells. She is only ten years old and has already had two bone marrow transplants. Six years ago, her parents had an idea for a "Thanks Mom" bone marrow campaign. Since then they have been able to work with the NMDP to run a national bone marrow drive each year in honor of Mother's day. There are drives being held all over the country with a goal of 20,000 new registrants. You can also register online for free while funding lasts. The event runs from May 7-21. You can learn more here. Please, please, please SPREAD THE WORD!
~~~
Thank you Sha for the lovely card that you sent!!!!

Thank you Indiana Mom & Dad and Monroeville Mom & Dad for visiting us this weekend and bringing food!

Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.
~Matthew 18:19-20

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

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. :)

-----
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?

---
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

Marrow Trek

Hello again,

I'm blogging this time to implore you to support a good (no, dare I say great) cause. One of my best friends from college, Jim Schoettler, called me a few weeks ago to obtain my input on a "project" he was working on. Knowing Jim, I was pretty sure this project involved snots and a dartboard, but I was mildly shocked and quite touched when he revealed his heart and his motivation to raise awareness about bone marrow transplants and the need for bone marrow donors. I enthusiastically jumped on board his project as well. Jim, of his own volition, contacted the Dana Farber Cancer Institute for sponsorship. I also put him in touch with the Cammy Lee Leukemia Foundation (who helped me with several bone marrow drives). This summer, Jim and another close friend of his, Jesse, from our college days (both experienced expert hikers) are planning a 4 month 3,100 mile trek across the Continental Divide Trail spanning the Mexican border to the Canadian border. They are asking for pledges (monetary and otherwise) for their trek with all proceeds going to support the above organizations. We are also currently working on getting more big organizations/corporations for sponsorship. With any luck, Jim and Jesse will be donning jumpsuits a la NASCAR style on their journey! ("Shake and bake") I know you're thinking that mountain goats and lizards and such may not really appreciate Tide or Marlboro or Coors Light logos. In fact, Jim and Jesse may inadvertently be walking targets for horny moose, but that is neither here nor there... All joking aside, Jim has set up a website, marrowtrek.org or marrowtrek.com, where you can find out more details and follow their progress. Incidentally, Jim is a great photographer (check out jdschoettler.com), so you may enjoy some amazing pictures along the way.

If you look carefully at the website, I am on the "executive" committee (aka CEO, aka the Big Kahuna, aka the Face of cancer). Bio available shortly... Actually, I think my official title is "peon". Checks, of course, can be made payable to "The Joseph Lin Personal Fund". Just kidding! (Note: the preceding was a JOKE). The donation process is laid out easily on the website. Within a week or so, a comically gigantic needle will be sent to you. All you have to do is stick it in the meaty part of your thigh... Again, just kidding. Just check out the website.

Recently, besides me, another close friend of Jim's has had an urgent need for a bone marrow transplant and is now still currently looking for a donor. While I have been extremely fortunate to find my donor and be transplanted within six months, many people out there have had to search for years or have died in the search process. There is something like a 1 in 20,000 chance that a patient finds a perfect match and the odds are even worse for minorities and mixed races. I think I've said this before, but only one person has ever found a match through their own bone marrow drive efforts. The numbers of people registered in the National Marrow Donor Program (NMDP) are unacceptably low. So, please please please consider contributing to this cause, if not monetarily to help support organizations like CLLF and Dana Farber to fund drives and research, then to motivate yourself and others to be put on the registry. I obviously have been a beneficiary of such efforts of other people, and I would be remiss, especially as a doctor myself, not to encourage this.

Jim and I were roommates for three years at Stanford. He's a straight up good guy so I can vouch for him. His mother, our treasurer on this endeavor, was the former Lieutenant Governor and Treasurer of Colorado for goodness sake, so you can be sure the money is going to the right place. Jim's a free spirit and one of the brightest people I know. When he commits himself to hiking over 3000 miles and helping good causes along the way, you can be sure he'll do it. And Jesse, even though I don't know him quite as well, I know he is cut from the same mold. In fact, these guys have done similar hikes before. If you look up "Colorado mountain man" in the dictionary, well, you'd find a definition of a male who hails from the Western region of the Unites States where there are many areas comprised of impressive natural elevations above the earth's surface. No, of course, you would see a picture of Jim as the definition. He's ruggedly handsome, physically fit, and maybe even available. I tell you, if I were a woman (wait a sec...), I'd probably marry him on the spot.

Whoa, I'm totally getting sidetracked here... In all seriousness, please check out marrowtrek.org. And don't just check it out, make it your home.
It would rock my world.

Joe

Hee Haw!

Remember Sam Wainwright, who was George Bailey's friend in It's a Wonderful Life? Well, Karen and I just watched that movie recently...

Anyway, Happy New Year everyone! We hope you all had a wonderful Holidays. Well folks, in a day and a half, I will be moseying on down to the hospital for a little tune-up, an oil change of sorts. I go into it feeling moderately terrified but cautiously optimistic. Actually, a lot more than cautiously, but quite optimistic. I've got quite an awesome team behind me. I feel like that Verizon cell phone guy who's got that huge network in the background complete with helicoptors and cranes and not the guy with the phoney "network" comprised mostly of paper cutouts. (My cell phone is Sprint by the way).

You've all probably made some New Year's resolutions, but if you haven't done so, I urge you please to consider becoming a bone marrow donor. The chances are infinitessimally small that you will ever need to donate, but that opportunity to save a life is incomparable. Believe me, before all this happened, I would have been the first to stand in the "No Way" section because I was afraid of the pain and/or torture. This is nothing compared to what the patients have to go through. There's no doubt that my donor came about because of someone else's efforts. I saw somewhere that in the US (or maybe anywhere), there has only been one patient in need of a transplant who has ever found a donor through his own efforts.

These last few months have been great and I wanted to thank everyone who have called us, sent us e-mail, letters and cards, given us gifts, prayed for us, hugged us, gone out to dinner with us, visited us, hung out with us, and basically all out supported us. We've had a wonderful time and learned so much along the way. I've spent a great majority of time over the last six months reading voraciously. I recently decided to write down most of the books I can remember reading and came up with about sixty books. There is fiction and nonfiction and everything under the sun in there, so if anyone needs any good book recommendations, just ask!

More than anything, what I've learned these last few months is that life is good. If, in my 32 plus years here, I can dole out any advice, it is to be kind. We all share the same earth, and in the grand scheme of things, most of us have it so good. So go out and hug your loved ones a little tighter and be kind, be generous. Also, if you can think of it, be especially kind to my family, my in-laws' family, and most especially my dear wife, Karen. I can't imagine going through this without them. I can only imagine that the only thing harder than being sick is to see someone you love have to be sick.

Thank you, thank you, thank you for being my Verizon network (even though I use Sprint!) I'll be okay. This ain't no thang! I'll be looking to party with you in a few months.

Joe

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!

Update.

Thursday, we learned that there are four people who have agreed to additional testing to see if they are a match for Joe. Two are from Taiwan, and two are from the U.S. We're praying, praying, praying that one of them is a perfect match for Joe!

Friday, Joe had his blood drawn, and we met with the doctor. His counts are still looking good - normal, or slightly below normal. Joe's platelets went down a bit, but that seems to be the trend a week before chemo. The plan now is to wait on the four people getting further testing. We're aiming for Joe to go into transplant in 8-12 weeks. This means we have an opportunity for a relatively relaxed holiday season. Transplant will probably be around January or February. Even if we aren't able to find a perfect match, we can go with the next best option, which is a near perfect match (which we have.) The doctor is confident this would be as good as a perfect match. So that's where we stand.

Friday evening, we spent some time with our CrossRoads fellowship. We met up with them again on Saturday evening to fill shoeboxes for Operation Christmas Child. Our fellowship participates every year, and it's one of my favorite things to do for the holidays!

This morning, Joe and I went to church together. It's always a treat when we get to attend together. Joe looks so great now, and everyone is always so excited to see him!

***

Happy belated birthday to Bekah!!!!!!

Thank you to Juanita for baking us a cake! It's really yummy. :)

Also a shout-out to Louis who has been training for a marathon in honor of Joe. Read more about it here. And if you happen to have an itch to donate to a charity, or know someone who does, visit Louis' Team in Training page. I know he'd appreciate it. Don't do it just for Joe, or Louis though. Do it for anyone and everyone who might benefit from the Leukemia & Lymphoma Society.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.
~2 Corinthians 1:3-4

Happy November!

Joe had a dentist appointment today. Now his smile is even brighter than before! His hygienist was really sweet. She has her own inspiring story, which she shared with Joe. After Joe's appointment, the hygienist actually called me back so she could share a bit with me, and give me some encouragement. I thought that was so sweet. :)

On Friday, Joe has his appointment with the doctor. I can't believe that next week will be round 5 of his chemo treatments. I imagine on Friday we'll have a better idea of what our next few months will look like. I'm not sure if this makes me relieved or anxious. Both I guess.

Here's something cute my mom passed on to me after receiving it from a missionary back home...

Daily Christian Wisdom

Being a Christian is like being a pumpkin. God lifts you up, takes you in, and washes all the dirt off of you...Then He carves you a new smiling face and puts His light inside you to shine for all the world to see.
-Unknown
***

Lot of praise and thanks today.

Praise God, because 355 registered to be donors at the drive in honor of Baby Livi. How awesome is that? Yay for everyone who attended.

Thank you to our neighbor Cathy for the really yummy pumpkin bread. Made from scratch even.

Thank you to Myra and Sheru for dinnering with us last night. It was really fun hanging out with the two of you and hearing all of your stories!

Thanks to Eddie who has been working with CLLF hold a drive in North Carolina! We miss you Eddie!

Thank you to my CrossRoad girls. It is so wonderful to have your love, support and encouragement.

***

I have info on Cammy Lee drives for November! Spread the Word!

Nov. 8
Virginia Commonwealth
College Avenue
Richmond, VA
11am-5pm

Nov. 10
Columbia University
New York, NY
11am-5pm

Nov 14-15
Virginia Tech
Williamsburg Room of Squires Student Center
Blacksburg, VA
9am-9pm ,9am-8pm

Nov 15 or 16
Stonybrook University, NY
11am-5pm
(not confirmed at this time)

Nov 26
Apex Chinese Church
Apex, NC
11am-5pm

Nov 27
Duke University
Durham, NC
11am-5pm

So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.
~Isaiah 41.10

Happy Friday

Joe had his blood drawn again today. His counts are about the same...slightly on the low side. Not too low though. Joe is still looking great and feeling great. Yay for that. :)

I helped with the harvest festival today at our church. It was a lot of fun. The kids were just too cute. So many people came over to ask about Joe and to let me know they were thinking about him and praying for him. Thank you so much for that. It really means so much to have so many people watching out for Joe.

My cousin-in-law's birthday is on the 28th. HAPPY BIRTHDAY OSAMU! Hope it's a fun one. :)

Also on Saturday is Sha's recital. :) Sha is a professor at Geneva College, and she is a wonderful pianist. You can hear her play at Geneva College, John H. White Chapel in Old Main Building from 4pm-5:15pm.

And for those in the Lancaster, PA area, there will be a Community Bone Marrow Drive "in honor of Baby Livi and thousands of children and adults like her."

Sunday, October 29th
noon-4pm
Cimbrian Offices
333 North Arch Street
Lancaster, PA 17603

Fundraising is taking place to cover the cost and it is open to everyone, so SPREAD THE WORD!!!!!!!

*click* *click* Who can we help?

Joe's counts are still lookin' good according to today's results. Also, Albert's home for a few days! We got to hang out with the family tonight. Good day. :)

Today, I'm posting some fun ways to help people...

October is Breast Cancer Awareness Month. One way to help is to click your way over to The Breast Cancer Site and click to fund free mammograms! The pink ribbon challenge is on, so your click is worth double!

While you're at it, you can help feed the hungry, fund healthcare for children, fund books for kids, preserve endangered land, and fund food for animals!

If your a Steelers fan, fight hunger with Click for Cans! (i guess you ou can also help if you are not a Steelers fan...)

Thanks to Caryn I learned that you can send Bounty cards that count! "Bounty® will allocate donations based on the percentage of e-cards sent in support of each charity. " The charities are American Cancer Society, Make-a-Wish, and National Breast Cancer Foundation, Inc.

And finally, ways to help dear Alivia, and others searching for a bone marrow donor!
Just click here. Maybe your business can help with a donation. If you are in Lancaster, Hershey, or Harrisburg you can participate in a fundraiser that involves FOOD. And there will be a drive in Lancaster at the end of the month...and this one isn't even minority based!!!!! Again, click here for all the info.

Don't forget about Christine and Jeremy and their food fundraiser!

There you have it. Fun ways to help. Fun, because a lot of amazing people have already done the hard stuff. :)

Much love to everyone. A lot of times I feel like I'm such a nag, "do this, do that, help with this, help with that..." I hope you know that Joe and I appreciate all the ways so, so, SO many people have helped us and people like us. I will say it forever, because I mean it. Thank you.

Thank you to Hannah for the fun card! Clifford is really great. :)
Thank you to A.M. and A.D. for the very cool card. I loved everything about it!

Google Doodle. :)

I learned today that the March of Dimes is petitioning Google to create a "google doodle" for Prematurity Awareness Day. Since I'm all about spreading awareness about MDS and marrow donation, I think it's only fair that I share in spreading awareness about other things too. So here is the link to sign the petition.
March of Dimes Petition

Also, I've encountered some people who *think* they may registered with the NMDP but don't remember. Others have moved or gotten married. All you have to do is go online to marrow.org to update your information. You can also call 1-800-marrow-2.

I received my letter informing me that I'm officially listed on the Registry now. Woohoo! It came with a coupon good for one free online registration. If you haven't already, many of you who have registered in the past month or so should be getting similar letters. Make sure you give your coupon to someone who can and will use it! If you don't know anyone who can and will use it, let me know and I'll make sure the coupon is put to good use! Thank you!!!!!!

Joe is still doing great. Tomorrow he gets his blood drawn again, and we have an appointment with the doctor. Next week we should be starting chemo round 4. That seems so hard to believe. Still praying every day for a miracle match.

If you have any encouragement from being united with Christ, if any comfort from his love, if any fellowship with the Spirit, if any tenderness and compassion, then make my joy complete by being like-minded, having the same love, being one in spirit and purpose.
~Philippians 2:1-2

How you can help!!!!

It is official! There will be a bone marrow drive in Philadelphia thanks to CLLF, S & L Fellowship, and Thomas Jefferson University Hospital! Thank you to everyone involved! Special thanks to Susan and S&L for agreeing to host, Ed for working on flyers, and of course Cammy!!!! Here is the info I have so far, I'll post more as I get more information...

Sunday, September 17th
12:30pm-4:30pm
Vine Street Campus (Chinatown)
11th & Vine Streets
Philadelphia, PA 19107-1820
Conference Room.

The exciting thing about this drive, is that there is funding available for HLA typing, which means that everyone is welcome to attend the drive. Yippeeeee!!!!!

For those near U. of Virgina, CLLF is holding a drive...
Wednesday, September 13, 2006
9am-4pm
University of Virginia
Newcomb Hall Room 389

For West Coasters, don't forget...
Karin and Bryan, Karin's parents, and their pastor have been working with Anna from A3M to set up a bone marrow drive in the LA area.

September 24
Evangelical Formosen Church East Valley
20625 La Puente Rd
Walnut, CA 91789

For those of you who missed the last PGH drive, STAY TUNED!!! We're working on two back to back drives, either the end of September or the beginning of October. They will both be in the Oakland area.

So how can you help? Well, if you are in an area where there is a drive. Go and register!!!! If you are already registered, or you're ineligible, SPREAD THE WORD! If you are a minority, far from all of the drives, and wanting to register - you should be able contact your local blood bank and register for free. If you are caucasian, you may have to pay a fee to register - BUT many places will waive the fee if you donate a pint of blood at the time of registration. So have a registering party! Grab some buddies, call your local blood bank to make an appointment and go as a group. Could be fun, and you could go out for dinner afterwards and celebrate the fact that you are making a difference!!!!

Since I'm on a roll. :) I'm going to remind all of you about cord blood donations. You can find more information here. 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. Spread the Word!!!!!

I keep saying it, but seriously...SPREAD THE WORD, SPREAD THE WORD, SPREAD THE WORD!!!!! Joe and I are not the only ones praying for a miracle match. And we are not the only ones you should be praying for either. So many people are praying for a match...and the fact is that finding a match is only possible when wonderful people like YOU make the decision to register to be a donor, and then follow through. Yes, I know that God has everything under control. But I also know that I don't always listen to God because of my own personal fears. Joe and I have had so many discussions since his diagnosis, and we strongly believe that God is teaching us more than ever how to face our fears. Not only that, but even as He's lighting a fire under our butts, God is using us to light a fire under everyone else's butt too!!!!! What better way to show love than to give - and in this case, to literally give from within.

We do realize that so very many of you have already registered, are making plans to register, have been helping us with drives, and helping us spread the word. We are so grateful. Words can not express how thankful we are. Honestly. We will be thanking you forever!

Thank you to Liann and Dr. Beasley for the lovely card and gift card. We were so touched to receive such a lovely and generous surprise in the mail. Joe and I often talk about what a great couple you are. We admire and respect the two of you so much and thank you for your love!

FAQ

I had to post this. Our dear friend Vince has been amazing as one of our "point people." He has just gone above and beyond in keeping people up to date and helping us in every way possible. Keep him in his prayers because he's taking boards next week!!!!!

Anyway, he was very helpful in getting some info about the national marrow registry. Obviously, Joe and I are now big advocates of the registry! Here's the info he collected...(Thank you Vince!)

"i received this information from three main sources; more detailed information can be found on these sites:
www.marrow.org - the National Marrow Donor Program website
the Central Blood Bank in Pittsburgh412-209-7131 (they are very helpful in answering any questions you mayhave)
www.bonemarrowtest.com (private lab; see FAQ below)

Here are some Frequently Asked Questions:
- How can i register for the National Marrow Donor Program (NMDP)?
- What specimen is taken for you to be registered into the NationalMarrow Donor Program (NMDP)?
- Can i see if i am a match for Joe, but NOT be enrolled in theNational Marrow Donor Program?
- If i am chosen, how will the stem cells be collected?
- Will we be having a NMDP registration drive at Pittsburgh Chinese Church?

FAQ answers:
- How can i register for the National Marrow Donor Program (NMDP)?
You can register at any local Central Blood Bank branch; there aremany in the Pittsburgh area. call their number (412-209-7131) or lookonline at www.CentralBloodBank.orgThey will pay for the registration fee if you are willing to donatesome blood at the time of your cheek swab. Otherwise, you may be askedto pay a fee for tissue typing costs (probably $50 or less).you can also register ON-LINE; log on to www.marrow.org, and you canhave a kit sent to you for $52. This payment is tax-deductible.

- What specimen is taken for you to be registered into the NationalMarrow Donor Program (NMDP)?
All that is needed is a cotton swab of your cheek cells.- Can i see if i am a match for Joe, but NOT be enrolled in theNational Marrow Donor Program? Yes, you can. This can be done through PRIVATE testing at anindependent laboratory which can determine your HLA results for the 6markers they look at when they determine whether or not you match. The cost for this process is $140 plus $15 shipping. They will mail you a kit, and then send you your results in about ONE MONTH. You can also select the expedited process, which will cost $375, but the results are returned in one week. Once you receive the results, you then need to give these results to Joe's doctor to see whether or not you match.
If you change your mind and want to be enrolled in the national program, you can do so by giving the results to the Central Blood Bank. The specific private testing lab that is recommended by the Centra lBlood Bank is the Tepnel Laboratory. All the info you need can befound on:www.bonemarrowtest.com

- If i am chosen, how will the stem cells be collected?
There are 2 ways:"Peripheral Blood Stem Cell donation takes place at an apheresiscenter. To increase the number of blood-forming cells in thebloodstream, donors receive daily injections of a drug called filgrastim for five days before the collection. The donor's blood isthen removed through a sterile needle in one arm, passed through amachine that separates out the cells used in transplantation, and theremaining blood is returned through the other arm.

Bone marrow harvesting is an outpatient surgical procedure performed in a hospital. While the donor receives anesthesia, doctors use special, hollow needles to withdraw liquid marrow from the donor's pelvic bones.Many donors receive a transfusion of their own previously donated blood. A donor's marrow is completely replaced within four to six weeks. "The patient's doctor will recommend one or the other to you, but it isyou who will ultimately decide which way to give them stem cells.

- Will we be having a NMDP registration drive at Pittsburgh Chinese Church?

i spoke with several potential sponsoring groups, but as of yet, i haven't been able to successfully coordinate a drive due to certainlogistics. i am still waiting to hear back from one and will let you now if things change. in the meantime, due to the length of time ittakes to get registered, i strongly encourage you to go on your own andget it done. Thanks again for your interest. i will keep you updated, and if youwould like to go with someone to the Central Blood Bank, let me know,and we can go as a small group. if this is the first e-mail you've received from me, let me know if you would also like to be added to the prayer e-mail list to receive updates on how Joe is doing. if you have any other specific questions, don't hesitate to contact me.

"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened." -- Matthew 7:7-8"