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

Counts dropping

Last week when Joe had his blood drawn, his counts had dropped. We were hoping it was nothing and the counts would stabilize by this week. Today, results of his blood draw showed that Joe's counts have gone down even more. They haven't hit rock bottom, but it has been months since they have been so low. To give you a better idea of where he is...

Normal Ranges
WBC - [4.4-11.0] k/mcL
Hemoglobin - [13.4-17.5] g/dL
Platelet Count - [145-445] k/mcL
Neutrophils - [42-74] %
Neutrophils-absolute - [2.20-7.70] k/mcL

Joe's Counts
WBC - 2.7 k/mcL
Hemoglobin - 16.6 g/dL (the one thing that stayed normal)
Platelet Count - 75 g/dL
Neutrophils - 32%
Neutrophils-absolute - 0.86 k/mcL

We don't know what this means. Joe will get his blood drawn again on Wednesday and Friday to see what happens. If the results on Wednesday show another drop, Joe will be getting another bone marrow biopsy that afternoon to see what is happening with his marrow. I don't know what happens after that. One step at a time. If the results on Wednesday show the counts rising again, then we'll proceed as planned with chemo round 6 beginning on Monday.

We're trying to remember to take one step at a time. Remembering that God is in complete control. It is scary to think things might be changing after being on the positive side of "bad" for so long. But we will try not to worry before we know anything, because worrying won't solve anything. Plus, there is a positive, and that is that everything has already been moving toward Joe getting his transplant sooner than later. God is in control.

Wednesday, Joe and I are also supposed to speak to the Asian Pacific American Medical Student Association (APAMSA) at Pitt (They are planning a bone marrow drive with Cammy Lee in the Spring!). We're hoping it is informal. :) David from Pitt has been so amazing with organizing everything and keeping us up to date. It is actually a bit intimidating! Pray that Joe will still be okay to go and share his experiences.

Saturday, we were going to kick off the Christmas season and attend a hospital party. With Joe's counts being funny though, we're going to be safe and stay home. Don't want to take any chances!

Thank you to Sandy for hanging out with me. It was really nice to catch up with you!

Thank you to Cammy Lee for the cheery message! You have been a great source of encouragement.

Not that we are competent in ourselves to claim anything for ourselves, but our competence comes from God.
~2 Corinthians 3:5

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

End of Round 4!

We didn't get a call today stating that Joe's perfect match was found. We haven't lost hope either. There is always next week!

Today Joe had the last of his injections for round 4. YAY!!!!! I know he is way happy about being done for a few weeks. Me too! The results of Joe's blood draw showed a little dip in his WBC, so they are back to "right under average." Not too bad. Joe's platelets look good. And funny enough, his RBC are now on the high side of normal. Hopefully they stabilize. It seems weird that they suddenly just keep going up.

I snapped a picture of the view from the top floor of the hospital parking garage. Can't tell from the photo that the weather is getting COLD!

Please pray for Christine. I've mentioned her in the past, and posted some of her poems. She is an amazing person, and is very much a poster girl for minorities who need bone marrow and PBSC transplants. We were so excited a few weeks ago when we found out that after a very risky partial-match transplant the marrow had grafted. Unfortunately, this past week things haven't been looking so good. Christine is experiencing many complications. We don't know her, but she has been such a source of inspiration. Keep her in your prayers.

On the same note, there will be a fundraiser and bone marrow drive in LA, in Christine's name as well as her friend Jeremy. Click here for more info.

And of course, lest you think I've been slacking! I have more bone marrow drive info from CLLF!

Friday, Oct.20
11am-6pm
Drexel University
Creese Student Center
Philadelphia, PA

Mon, Oct. 23
11am-4pm
John Hopkins University
3400 Charles St.
Baltimore, MD

Wed, Nov 8
11am-5pm
Virginia Commonwealth
011 College Ave
Richmond, VA

Tues, Nov 14-15
10am-8pm
Virginia Tech
Williamsburg Room of Squires Student Center
Blacksburg, VA

Spread the word, spread the word, spread the word!!!!!!

Thank you to Yi-Ting and my 3rd auntie and uncle for the sweet cards. You are the best!
Thank you to hubby Joe for the second best gift ever. (You being all better will be the BEST gift ever! Of course, if we want to get all technical and sappy, you are the best gift ever.) I'm praying for you always!

Do everything without complaining or arguing, so that you may become blameless and pure, children of God without fault in a crooked and depraved generation in which you shine like stars in the universe as you hold out the word of life - in order that I may boast on the day of Christ that I did not run or labor for nothing. But even if I am being poured out like a drink offering on the sacrifice and service coming from your faith, I am glad and rejoice with all of you. So you too should be glad and rejoice with me.
~Philippians 2:14-18

Photos.

Joe sportin' his blue bird in the forest shirt designed by Lisa
and a pink ribbon supporting Susan G. Komen Breast Cancer Foundation.

Lilly sportin' her Bravery Bracelet as part of the AA&MDSIF Awareness Campaign.

Cammy sportin' her Carnegie Mellon shirt from the CMU Lambdas!


Joe, Lilly, and Mrs. Li


Lilly, Mrs. Avery, and Joe

Adventure. :)

I'm not quite sure if Joe was simply up for an adventure...or if he was just missing the hospital. In any case, he had quite an adventurous day!

We slept in. Then we decided to wait for the home care nurse to come do his semi-weekly blood draw and change his dressing before having some food! All was going according to plan- Joe's lines were flushing properly and they all had good blood return. Joe vital signs were all normal. He was feeling great and he was looking great. Then the nurse began to change Joe's dressing that protects the insertion site of his triple lumen. She notices a tiny drop of what she felt could be pus. It was a bit yellow. Fearing it might be a sign of a line infection, the nurse called the doctor's office. They asked her to pull Joe's line and send it in for a culture. Joe's counts have been staying up and he hasn't been requiring transfusions or IVs lately, so there had already been talk about possibly pulling the line until he needs it again. The line was pulled. It was quick and painless and Joe looked pretty relieved to be rid of it. However, about a minute later, he started coughing...and then sweating profusely, and it wasn't stopping. Joe kept saying he would be fine momentarily. Our nurse looked worried though, and she didn't like the sound of Joe's cough. Not wanting to take any chances, she called the paramedics. She just wanted to be absolutely positive that it wasn't something serious - such as bleeding due to unexpectedly low platelet counts.

Well, the paramedics came, and Joe was starting to feel better. But just to be certain, he agreed to go to the hospital. Joe got to ride in an ambulance! They didn't turn on the lights and sirens for him though. :) I followed them in my car and met Joe in the ER. By this time he was feeling completely fine and ever so slightly annoyed to be in the hospital! We were only there for a little over 5 hours. :) Apparently, the "pus" was quite possibly just some skin or something. And the coughing and sweating was likely a vasovagal response. Just to cover all the bases, Joe was given a gram and a half of Vancomycin. I noticed Joe getting a bit red. But he was acting so calm and nonchalant. The redness started inching down slowly. I kept pestering Joe and asking him how he was feeling, and he kept saying he was fine...maybe a little itchy. Near the end of the Vanco, the "little itchy" became one HUGE itch, and Joe's whole head and chest area looked red. He was given Benadryl which made him immediately drowsy and caused the rash to fade. Of course NOW we now that he had red man syndrome! Fortunately, it is not uncommon, and was an easy fix. So Joe's back home! Once again, the results of his blood draw were good! And Joe is FREE from his line for now, so he was able to take a REAL shower, by himself, and without a huge covering of saran wrap and tape! He is a happy man this evening. :)

The bone marrow drive yesterday was wonderful! Thank you to every single person who registered to be a donor. We were SO touched by all the people who were signing up. In total there were 88 people who registered. Yeah, I was praying for HUNDREDS. But 88 is a good number. We are hoping to have another drive in the future - in Oakland! So stay tuned for details. :)

So, I arrived at the church a little after 9am. Of course, Lisa, Louis, and Cammy were already set up and ready to go...and there were already people signing up, including Eric who helped with registration as soon as he finished swabbing! My dear parents showed up shortly after I did. They were great for moral support. They let me sit next to them during church service, and I literally had to force my mom to go grab some lunch with my dad...close to 2pm! I'm so grateful for them. My mom stayed up all night Saturday to make flan for Joe! Then my parents spent the whole day at the drive - mostly thanking people for being so wonderful. Afterwards they made sure that Cammy and Louis wouldn't go home hungry, and drove Cammy to the airport. I'm so blessed to have such great parents. :)

Lisa was sporting a "Blue Bird in the Forest" shirt that she designed, and was giving away darling "Blue Bird in the Forest" pins! How cool is she? (The answer is very very cool!) Lisa has been so passionate about helping us and spreading the word about registering with the NMDP and MDS and Leukemia. She even refused to leave her post, even though my mom offered to take over so she could grab lunch. I got her a plate, but I don't even know if she stopped to eat!

Then there was Louis. I totally forgot to ask if I could get him a plate of food...and he missed lunch. I felt so bad! Fortunately, my parents took him out for food afterwards! Louis also worked the whole day, and he even brought a bag of movies for Joe and I to borrow. Fun!!!!!

Erica, I have met once for a couple hours. However, we have talked weddings a lot online. Well, she kindly gave up her Sunday morning to help with the drive. It was so nice to see her, and it meant so much that she was willing to come out to help! She was good for hugs too!

Camille...I met her for the first time yesterday! She is another girl that I've chatted with about weddings and married life. She kindly gave up her Sunday afternoon to help with the drive. She was working so hard, and people thought she was with the Cammy Lee Leukemia Foundation! My friends and family were so amazed that these girls I met online were so willingly going out of their way to help. It was amazing. :)

It was great fun to meet Cammy Lee this weekend. And yes, it really was THE Cammy Lee. (She swears she had nothing to do with the naming of the foundation - and she has had to tell a lot of people that yes...she is in fact alive and well! She does have quite a survivor story though.) She is sweet and funny and understandably passionate about what she does. We are SO thankful that Vince hooked us up with her!

Since Joe's counts have been good, he was able to visit the drive in the afternoon. He was wearing a mask of course. :) He also made me his DH - Designated Hugger! This made me laugh, because on message boards, he's my DH - Dear Husband. :) Joe was SO THRILLED to be able to see so many friends from the church and from outside of church. It really did wonders for his spirit to be able to see everyone! Joe had a smile on his face straight through the end of the day.

So the drive was a success. Cammy was happy with the turn out, and so were we. I tell you though, next time we're shooting for HUNDREDS!!!! :) Thank you so much to Pastor Jim and Pastor Caleb for so willingly opening the church up for the drive. Thank you also to their wives Kathy and Esther - because I dunno...but every awesome pastor that I know has the support of a very awesome wife. :) Thank you again to everyone who registered. It was SO wonderful to see and feel all of the love and support! Thank you to everyone who had the heart to donate but were not eligible for whatever reason. Thank you to everyone who has been faithfully praying with us. Thank you to Margaret who was visiting for the first time and decided that she wants to help set up a drive at her church in Virginia. Thank you to Liz, Rachel, Chris, Melissa, Alex, Dorothy, Lauren and Tony for the *beautiful* handmade cards. We loved every single one of them!

We just felt so blessed and so loved this weekend. But then, we feel so blessed and so loved all the time! Praise God for that, right?

Thank you to Precious for the card and the licks. :) *Arf Arf*

Thoughts...

Recently, I've been reading the blogs of others who are battling leukemia. Links to those blogs are in the sidebar. As Joe and I have read through various entries and prayed for others who have been shocked by unexpected news we've had various discussions and have just been amazed. It is all at once sad and beautiful, thought-provoking and eye-opening. I want to feel sorry for these people that I may or may not know...my heart aches as I read words that have come from my own mouth, or that I've heard from Joe. But then...always as weaknesses are revealed, strength is seen shortly after. That is a beautiful thing. Also beautiful is the faith I see that everything is under control. The willingness to accept this life that has been dealt and live it the fullest! And finally, seeing friends and family band together to help the people they love is beautiful.
It has all been very thought-provoking for us though, and very eye-opening. I mean, it is incredible when you realize how many people out there are affected by leukemia or MDS or cancer. And it is positively mind-numbing when you stop to realize how many people are affected by other things that are just as scary. It's just interesting how Joe's diagnosis has caused me to notice things I might have ignored in the past. I don't know. There is so much running through my mind right now, but no way that I can put any of it down in a remotely eloquent manner! It's late, and the drive is in the morning! Maybe tomorrow I can unjumble my thoughts more.

Thank you David for stopping by before studying for your boards! It was so great to see you. Thank you to Cammy for flying down from New York for the drive! And thank you to Louis for picking Cammy up from the airport. It was fun sitting around with the two of you and eating pizza, spaghetti and jello! Thanks for the puzzle too Louis!!!! It was so sweet of you to get it for us...especially since I'm always stealing yours when we visit! Thanks to Ray too for stopping by and bringing the gifts from Hawaii. I'm so impressed that you picked them out yourself. You have great style!

I hope to see a big turn out for the drive tomorrow!!!!!! Big hugs to everyone.

Doctor's orders!

Joe was "prescribed" a night out for dinner by the doctor's office. This was such an exciting moment for us!!!! Joe still needs to be cautious, as his counts may still fluctuate while he's on chemo. But we don't need to be as strict as we were before! So we went to a restaurant nearby that we knew wouldn't be very crowded. We were both a little nervous. It has been weeks and weeks since Joe has been anywhere besides home and the hospital. We did enjoy a lovely dinner, and then we came right back home! So, Joe is still expected to avoid crowds and people who are sick. He doesn't have to wear a mask when we go out unless Joe will be around people for prolonged periods of time. And, he needs to be armed with Purell at all times! We can handle all of that. :)

Joe and I are really excited about the drive coming up on Sunday. We continue to hope and pray that there is a great turn-out. I'm going to be there! Who's with me? Information about us and the drive was published today in the World Journal and the Erie Chinese Journal. The articles are online as well as in print. Exciting!!!! Cammy Lee will be arriving tomorrow afternoon, and we're so excited to meet her! Thanks Louis for picking her up from the airport for us.

As a reminder, here is all the drive info again. If you are Asian, unregistered, between 18-60, and in the area come on out!!!! (All the cool kids are doin' it! ;) )

Bone Marrow Drive set up by Cammy Lee Leukemia Foundation
hosted at
Pittsburgh Chinese Church
8711 Old Perry Highway
Pittsburgh, PA 15237

from 9am-3pm.
(For those who are interested, there will be a combined service that Sunday with the Chinese-speaking congregation and the English-speaking congregation. Service is from 10am-11:30am. Sunday School is from 11:30am-12:30pm.)

It is a minority based drive.

All donors will be required to fill out a confidential donor information and consent form. (Donors must be between the ages of 18-60). The form will ask for:
* Name, DOB, Age, SSN, Sex, and Driver's License Number
* Donor telephone and email information
* Race and Ethnicity information
* Contact info for two close relatives or friends who may know how to reach you if your address changes or you are unable to be contacted.
* A medical evaluation
Donors also fill out a confirmation card.
Then one just needs to do a cheek swab from four areas of the mouth to complete the registration. Remember, even if you are not a match for Joe, you could possibly be a match for someone else who is praying for one!

Check out this NMDP site for more information.

Thank you to Frank and Janet for the lovely card. We love that you are always looking out for Joe. Thank you for your love! Thank you to Pamela for your sweet card. You are a sweetie, and sure make me proud to be related to you! And thank you to Gordon and Julie for the book and box of chocolates you left at our front door. What a lovely surprise! Hope to see you soon. :)

Happy day!

Happy day!

Yet another good day. Joe had his semiweekly blood draw today. The results were better than ever! We were just so thrilled. We still need people to come out for the bone marrow drive on Sunday though! The best case scenario is for Joe to be in remission when he gets his bone marrow transplant. However, even if his perfect match is found tomorrow...or Sunday (!) all the logistics and procedures that need to take place would put the transplant 6-8 weeks from now. He's pretty darn close to remission...but that does not mean cured. We are hoping and praying though that his counts continue to stay high until transplant time. Then he would be able to go back to enjoying some of the things we've taken for granted in the past, without fear.
Cammy Lee is coming to Pittsburgh on Saturday, and the drive will be on Sunday. We are really praying that all of these drives being held in honor of Joe will help in finding him and many others a donor.

We got news that more people have donated vacation time. Joe and I tear up...and sometimes cry (happy, thankful tears!) thinking about how generous people are. It just doesn't get old. It continues to be overwhelming, and we continue to feel far more blessed than we know we deserve.