Journal History

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Tuesday, November 11, 2003 5:41 PM CST

UPDATE:
Dec 18, 2003
Just upload some new pictures. We will be in California tomorrow for 2 weeks. Hope to we can visit Kayli's & Luke's family on this trip.

MERRY X-MAS & HAPPY NEW YEAR TO ALL !!!


Thanks for checking in......



------------------------------------

Nov-2003

Cindy just went to the clinic on Monday, 11/24/03. Everything looks GOOD. Great CBC counts are sure to bring peace of mind to us for the next 3 months.

WBC = 10.4
HGB = 14.4
Platelet = 265K

HAPPY THANKSGIVING EVERYONE !!!!!!!

>



Sorry for no update....since��a long time.

Fist of all, our deepest condolence to Jared�s family. Jared became an angel 3 weeks ago. His web site link above.

There were so many bad news to our JMML family since my last update. Conor, Dylan, and Jordan G all have relapsed, the worst than the worst parents� nightmare. All hearts and prayers go out to you.

The kids are doing great. As far for Cindy, she is doing well. I do not have her counts since we have not gone to the clinic lately. Her next appointment is end of this month, so I will post her count then. Cindy has her first 2 shots last month. As you may know. She has to restart all her immunization shots all over again, just like a baby.

Brian is in first grade and enjoying school. He can read simple books and write some words. Angela is walking now. She knows and understands a lot of things consider she is only 13 months. We spent most of our summer times go to swimming. The kids love the water. Our past vacations were mostly at the beach. We spent Halloween night in the mall because the cold & wet weather. Angela was Teletubies, Cindy was butterfly and Brian was a spider man. We all have a great time.

Grandma Mau has been with us since mid-July. I just extended her visa until next year. She is a big help in taking care of the kids and around the house. And Binh has someone to talk to when I am at work. BTW, grandma Mau is expecting another grandson this month. Binh�s sister, Dzung is expected to have a boy anytime now.

Binh is thinking about going back to school or looking for a job. Not sure yet but is thinking about it. It has been fortunate and less bumpy journey for us, considering how other JMML kids & their family have to go through.

Lastly, we got a special visit from The Jankowski Family. Nathan, Jennie & Kayli came to Denver to meet Liz and her family. Liz is Kayli�s donor. They came to our home for lunch. We have great conversations about our journey and dealing with JMML. We talked and talked and times they have to leave. It was a touching moment when Kayli gave Cindy a big hug goodbye. Kayli is a sweet girl. She played with Brian and Cindy the whole time. Thank you for coming, Nathan & Jennie. If we go to CA this December, we are sure to give you a call.

No new picture yet, but I will have something soon.

Thanks for checking in.

Tuesday, August 19, 2003 11:11 AM CDT

Thanks for checking in..........

Last time, we came back from a vacation, Cindy had very bad ear infection. TCH gave us antibiotic (ear drops) and it did a wonderful job after a few days. They also did CBC and everything was normal (WBC 12; HGB 14.5; Platelet = 345). Cindy also saw the specialist to test her development. Overall, they ranked her development in 92 percentile or (top 10comparing with others 4 years old. That is awesome !!!

Cindy is strong and very playful. She has so much energy to play all day w/ Brian. You can tell by her HGB of 14.5. Medicine, she only needs to take Cephalexin (sp?) 2x a day. She eats and drinks very well except gaining weight.

Brian & Angela are doing wonderful. Brian will attend 1st grade next week. He is very excited to see his friends again. Baby Angela just got her first 3 teeth along with a fever. Thanks to Tylenol, it kept the fever in check. Angela is learning to walk now. Yesterday, she stood by herself for a few seconds. She already knew how to wave bye-bye, shake her head, kissing, dancing, and many more. She seems to be a bright baby girl. I guess you can call Angela, the �hospital babe� because Binh was in the hospital every single day during a whole pregnancy. 2002 was a long year and here we are with so much blessing with Cindy�s health. Unfortunately, we did lost Colby and Riley to JMML. I know angels Colby and & Riley are looking over all the kids.

Grandma Mau has been here a month now. The kids love her very much. Binh and Grandma usually take them out to the park to play and recreation center to swim almost everyday. At home, Cindy & Brian love to play Dr Mario (puzzle game) against grandma. Off course, they set easiest level for them while grandma has the highest level. Guess who win all the time?

My work is getting very busy with the new product. Look likes I will have to go to Singapore this December for 3 weeks. For those who don�t know, I work for disk (or hard) drive company. We design the product here but manufacturing in Singapore.

From my last update, we have been getting to know quite a few newly dx with JMML. We also have couple kids going through 1st BMT except Connor with his second. Please keep the kids and their family in your prayers.

Thursday, July 17, 2003 4:24 PM CDT

Day +470: Check Out New Pictures.

I can�t believe it has been this long post BMT. We are blessed with how well Cindy is doing. Before I go on, I am saddening by the news that we just lost Riley few weeks ago, another JMML living in Australia. Please pray for Riley & family to get through these difficult times.

Cindy & family are doing really well since the last update except Cindy just develops an ear infection on both sides. Binh is taking Cindy to TCH to check it out. Hopefully just a simple antibiotic will do a job. Also, Brian will have his cast taken off today too. The Kaiser is next to TCH so this makes thing easy for Binh. Angela as always is a sunshine girl. She smiles all the times and very fun to be with. She starts to stand up and should be walking anytime now.

Guess what? We just came back from a last minute vacation. We went to Springfield, VA a day after July 4 to visit my 2 brothers. My parents from California also were there. It was great to see everyone. We have a chance to celebrate Cindy�s cousin B-day. The kids were having a blast. The next 2 days, we went to museums and monuments in Washing DC. It was hot and humid but overall, we have a great time. After reading updates from Niki (Brian) and Laura (Colby), we could have met them there in person. What a missed opportunity for us.

We stayed in VA for 4 days before heading to Montreal, Canada. We then rented a minivan and drove to Toronto to visit Binh�s childhood friend. They have not met in years. Linh and her husband Vinh welcomed us to their home with open arm. We then went to Niagara Falls together and spent a night there. Wow, it was incredibly beautiful. We stayed at Sheraton over looking the waterfall. We could have spent a week here and enjoyed the beautiful scenery. We went back to Linh&Vinh� house in Toronto, spent a day and headed back to Montreal for my cousin�s wedding. We got to meet lots of my relatives we have not seen for years. Everyone asked about Cindy and glad to see how well and strong Cindy is now. After diner, they have a dancing party. Cindy and Brian was a star on a dance floor (See the picture of Cindy dancing).They did not want to leave even it passed midnight.

The next 2 days, we spent times visiting Notre Dame Cathedral and walking around the city. Montreal is a beautiful city. The weather was very pleasant and cool. We only spent here 3 days so it�s kind of short to explore the whole city. Anyway, another relaxing trips for all of us.

After we got back, we got news that Binh�s mom was on a plane and coming the next day. We expected her to come in August. Luckily, we�re back just in time. Brian and Cindy is very happy see Grandma Mau. Last time she was here, she spent most of her time in the hospital. Now we will try to bring her to see the country as much as possible. It will be a great summer. Angela is slowly getting to know Grandma Mau again. She is a lot bigger now than the last time Grandma Mau left.

Wednesday, June 11, 2003 4:59 PM CDT

Please stop by Colby's page to leave your comfort words (see link above) for the Coles family . We are saddening by the latest news. Our hearts and thoughts are with you, Jack & Laura & Colby & Cameron.

The past 2 weeks have been very eventful. Lots of mishap. Starting with Brian broke his arm. Then Binh brought Brian to the hospital the next day because they saw some fractures they did not see before. After another X-rays, everything looked good so they went home for nothing. On the way home, Binh reared end another car and got ticket for follow to close. The car�s front severely damaged with broken radiator. Cost, ~ $ 5K. The good news was, nobody hurt. A week later, Brian and Cindy went down to the basement and forgot to close the door. Angela was in baby walking frame and quickly followed. She felt down stair and Binh was franticly run to pick Angela up. Needless to say, Binh was extremely shaken while checking Angela�s body & head. Luckily, Angela only had a small scratch on her nose. We have a short stair down to the basement, so we were very lucky. Still it was a scary moment. Fire drill, put a lock on basement door or throw away the baby walker.

Health wise, everybody is doing great. Cindy will come to the clinic next month for various tests. We will ask then when Cindy receives her first immunization shot. A sign of a normal life, slowly. Angela is the eater. She eats everything we give to her. She is big and very healthy. Best of all, she smiles a lot. Guess what ? at 7 months, Angela already knows how to clap hands when told. She seems to be very bright girl. Brian graduated Kindergarten last week. But he missed his graduation day because he went to the hospital for his broken arm. Overall, he did well on every subject.

Grandma Mau might come to visit us again in August. Her visa was approved last month. So we are looking forward to see her again. Last time grandma Mau came, she spent most of her times in the hospital or at home babysitting the kids. Hopefully, we can take her around to different places this time.

Take Cares Everyone.

Thursday, May 29, 2003 2:59 PM CDT

Sorry it�d been awhile since my last update, but I have new pictures for you to see.

We have great times on Disney cruise. We took many pictures to prove it. It started with a limousine to the airport. We arrived at Orlando on Sat and stayed at Hyatt inside the airport. We checked in the cruise ship the next day and headed to Bahamas overnight. Our room is on deck 8 (highest) and has an oceanview. Here, we spent a day at The Blue Lagoon beach. Brian & Cindy spent countless hours swimming. Binh and I took turn to swim with the kids and babysitting Angela. We stopped by the dolphin encounter show to watch dolphins performed tricks. By the time we got back the Disney ship, we did not have enough time to go shopping for souvenir.

Next day, we headed to Castaway Island, privately own by Disney. It has a beautiful beach and clear blue water. Again, Brian & Cindy spent countless hours swimming and so did we. We all have very dark suntan now. One of the best part on Disney cruise is they have a kid program for different ages. You can send the kids from 9 Am to 12 midnight and pick them up anytime. They have all kinds of activities for the kids not to get bored (i.e. sing, dance, stage perform, drawing Mickey, games and etc�) Needless to say, Brian & Cindy loved it.

Brian & Cindy got to meet & take pictures with their favorite Disney characters. Cindy even got a special treatment to meet with the Captain and Captain Mickey privately. We also got first seat row for the Disney Dream Show. This is a MUST SEE show. Cindy loved every minute of it. BTW, Make-A-Wish representative arranged all of these VIP treatments for Cindy.

At the end, we have wonderful times. This trip brought lots of smiles to Cindy and all of us. We are grateful and thankful to Make-A-Wish volunteers and all the people�s donation to this charity.

Cindy went for check up last week and everything still looked good. Her next appointment is next 3 months.

And now, a not so good news. Yesterday, Brian felt and broke his right forearm while climbing the monkey bar. He broke two bones near the wrist. I took him to TCH emergency room and they put it back. It was very bad fracture. Binh just informed me that TCH called back today and they want to bring him back to redo it. They saw some other fractures today but did not see them last night on x-ray. Well, this is the second time Brian broke his arm. Last time, it was on the left. For those who know Brian, he is fearless and active. What can we do?

Please continue to keep the kids in your prayers.

Monday, April 28, 2003 6:34 PM CDT

We got the results back. 100% Donor Cells. Hooray !!! IGG levels show immune system is good. I forgot to ask the number but was told it is almost back to normal. We are blessed and thank you for your prayers.

For the first time in awhile, we all went to Easter service together. We feel more and more comfortable now to bring Cindy to the public places. We were hesitated before because of Cindy�s immune system.

It�s official ! We got tickets for our Disney cruise trip. Make-A-Wish even arranges a limousine to pick us to/from the airport. This trip is a 4-nights to Caribbean. We will post the pictures for everyone to see. Stay tune��..

We sent Cindy to preschool for a few day last week to see how she feels. Cindy loved it. It is close to our home and it serves breakfast and lunch.

Got to run. Please don�t forget to pray for the kids.

Friday, April 18, 2003 10:37 AM CDT

Happy Easter To All !!!

Cindy had bone marrow biopsy on 4/10/03. Preliminary result looks very good. We should have the final result within a week or 2. They also drew lots of blood for various testing. CBC is still awesome. So we are very confident it will be 100% donor cell. Once we get this result, we will have a celebration.

Heath wise, Cindy continues to thrive. It is official that Cindy no longer needs IVIG. She will be x-ferred to Oncology with Dr Trobaugh from now on. We want to use this opportunity to thank you Dr Quinones, Dr Giller and all BMT physicians & nurses who have taken very good care of Cindy. And all prayers and JMML families out there, thank you for your prayers and supports you have given us through out this ordeal. To our family members and friends, thank you for being there. We have Cindy with us today because of all of you. Again, Thank You All.

Binh has been teaching Cindy to write/read ABC and now she knows how to write/read A-F. We plan to enroll Cindy to preschool sometimes this September. Brian is thriving at school. He already knows to do some simple math, likes add and subtract. He also knows geography of 20+ states or so. We are very proud of him. Angela is growing bigger everyday. She weighs a whopping 19 pounds and very healthy.

We got a word form Make-A-Wish about Disney cruise. We will leave early next month for a 5 days cruise. It will be fun.

Looks like only Danette got it right for the pictures. From left to right - Angela, Brian and Cindy. Great guess Dannette.

Please don�t forget to pray for the kids and their family.

Colby relapsed 2nd time � waiting for a miracle with DLI (donor lymphocyte infusions).
Bronson, Riley & Jared just received BMT and in recovering stage.
Conor & Dustin are getting BMT.
And many many other kids battling for their lives everyday.

Friday, March 28, 2003 3:51 PM CST

CHECK OUT NEW PICTURES.........

We have a huge snowstorm last week. We got around 3 feet at our house. It took me 6 hours just to shovel a driveway. The kids have fun of making snowman and playing in snow. Actually, I was making a snowman and after it was done, both Brian & Cindy yelled �Dad, this does not look likes a snow man�.

Cindy�s IVIG was delayed for 1 day due to snow. We headed to Hawaii the next day and it was chaos at the airport. It was like a campground with people lying on the carpet everywhere. We waited for 2 hours just to get a boarding pass. We barely made to the plane.

As for IVIG and monthly check-up, CBC is NORMAL. Cindy is doing really well. Cindy will have bone marrow biopsy in the next 2 weeks plus immune system study plus many more��We have come a long way.

We did not go to Disney cruise b/c of booking problem. So we decide to go to Hawaii on our own. We will go to Disney cruise later on. Hawaii trip was wonderful. Brian and Cindy have a blast playing in the beach. They are afraid with waves but fine if we hold them. Thus they love to swim and refer the hotel�s pool. So, We spent lots of the time swimming either at the ocean or hotel�s pool. We went around Oahu Island and visited several attractions on the way, i.e. Pearl Harbor, Polynesian culture center, Waimea Falls, Sunset & Waimanalo Beaches and many places. We took tons of pictures but I can only post a few of them. The trip was relaxing and lots of fun for all of us. It was a great feeling to see Cindy smiling and playing in the sun non-stop with other kids.

Before I stop, there are several JMML kids are getting BMT. The first 100 days are very crucial to BMT patients. Please keep them in your prayers.

Wednesday, March 5, 2003 11:21 AM CST

Hello Everyone,

I have the greatest news. Colby, who just had 2nd BMT in Jan 03 and was told of relapse last week. Well, MIRACLES DO HAPPEN. His recent test showed 98% donor cells. Please visit his web site (see link above) and sign in Guestbook.

Cindy had Respiratory Syncytial Virus (RSV - a cold virus) 2 weeks ago and so was Angela. Her appetite was poor and inhibited some low-temp fever. There is no medication to treat RSV so we let her to fight on her own. She did receive her monthly IVIG 2 days after dx with RSV. Long story short, both Cindy & Angela are fully recovered now.

Lats clinic visit: CBC are good except WBC = 14k, due to fighting the infection. Cindy will have a bone marrow biopsy in April. This will be her 1st post-BMT anniversary. Ideally, we want to know a bone marrow biopsy result first before we have a big celebration.

We got words from Make-A-Wish that we will go to Disney cruise at the end of this month. Binh is so stress out with 3 kids that she desperately needing a break. We have not had a vacation for 2 years. It should be a good & relaxing one.

Just a quick note, got to go. Please keep Cindy and others in your prayers.

Wednesday, February 5, 2003 4:52 PM CST

Happy Birthday Cindy !!! You Just Turn 4 (Feb 12).

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Well, we do I start....Last week, we sadly said goodbye to grandma Mau. She came back to Vietnam after spending 11 months here to help us out with Cindy & the kids. It is beyond words to describe how thankful & grateful of everything she has done for us, especially for Cindy. Cindy�s recovery journey would have been unbelievably hard without her help. Thanks you Grandma Mau. FYI, she arrived in Vietnam safely and just in time to celebrate Lunar New Year. If Cindy get permission to travel this Summer, we plan to go there to visit her.

Cindy has an echo test on Monday. Results look very good. She is now off Diltiazem (to lower blood pressure). She only takes Acylcovir and Cephalexin 2x daily and Bactrim 2x on Fri-Sun. Next week, Cindy will have a clinic visit for IVIG and CBC. We are counting down to Cindy 1st post BMT anniversary. 58 more days are to be exact. Cindy will turn 4 next week, Feb 12. Last year, we have a very big birthday for her b/c we did not know if she will be us today. And now she is a healthy little girl. We pray for this to continue for many years to come.

Things are very NORMAL at home. Angela is growing bigger everyday. She is very easy toddler. She does not cry for no reason. Feed her full and she is happy. She smiles and baby-talks back when you talk to her. Brian received his first kinder garden report card. He did well overall. We just enrolled him in kinder club. This keeps him at school until 3:30 and gives Binh another 4 hours of peaceful times. The thing about Cindy, without Brian, she plays by herself and very well behaved. Once Brian comes home, she becomes a monster, tearing and messing up the whole house with Brian. This does not count the fighting and crying when they fight over �..well, everything. I guess you could say NORMAL stuffs.

Our hearts and prayers go out to families with kids fighting various diseases. Colby is going through 2nd BMT. Connor is recovering from ICU and his parents are struggling with the news regarding the difficulty for 2nd BMT. Jake Jacob is in ICU to treat Roto Virus. Bella is still waiting for result to confirm 100% donor cells. Lastly, new diagnostic kids are getting ready for their first BMT.

P.S. We are in progress of setting up a date with Make-A-Wish to go to Disney Cruise. We are looking to go sometimes late this month or next.

Sunday, January 19, 2003 at 12:34 PM (CST)

Cindy went to the clinic for monthly IVIG last Wednesday. She did OK with the poking (just cried a little bit). Wow, can you all beleive it ? only 2 1/2 more months is Cindy's 1st Aniversary post BMT. Docs are very impress with Cindy progress. Things could not be better.

CBC is great. WBC = 9.9 ; HGB = 14.9 (no wonder she has so much energy) ; Platelet = 358 (a new record).

Well, everybody is doing great. So far, we are lucky that none of us get a flu this winter, just a minor cold.

I checked my Yahoo email (Fale2000) today and found some emails from JMML family a month ago that I did not reply. Well, I did not mean to since I rarely check it. I mostly use my work email. I guess I need tell everyone to send to my work email from now on. So here it is : Thu_nguyen@maxtor.com

We have a few kids in need of extra prayers.

Colby: 2nd transplant next week to get rid of those cancer cells for good.

Connor: In ICU for virus or some kind of infection. Like Colby, he aslo relapse and will need to be heathy to get ready for 2nd transplant soon.

Bella: Her parents are worried of relapse due to recent CBC. Please pray for remission still for Bella.

Please do not forget many other kids are battling many diseases everyday. Please keep them in your prayers.

Friday, January 03, 2003 at 02:51 PM (CST)

Quick Update: Just post new pictures...Check them Out.....

The entire family is well. Cindy last CBC was excellent. The surgery went well and no more tubby for Cindy. Her appetite is awesome. We are blessed.

We decided to stay HOME this holiday to minimize the exposure to winter' bugs & virus. We celebrated Xmas & New Year within our family & close relatives. We came to my sister's house on X-mas and Binh's sister house on New Year. The kids got ton of presents. As usual, the toys are antique items now after a week of playing.

We wish everyone a Happy New Year, A Cancer-Free year and many to come for all the kids.

Tuesday, December 24, 2002 at 09:36 PM (CST)

HAPPY NEW YEAR TO EVERYONE

Tuesday, December 17, 2002 at 11:54 AM (CST)

It had been awhile since my last update. Things are still going well at home. Let�s see. We celebrated Thanksgiving at home with a few family members. Next day, we drove 3 hours to Steamboat Springs and spent 3 days there. This is a famous ski resort in Colorado. We stayed at a 3-bedroom townhouse. It is a lot more convenience than staying at the hotel. This is a beautiful little town with lots of activities. We registered Brian to ski lesson for kids under 6. He spent 3 hours learning how to ski and loved it. We did not registered Cindy since we worried about her health and the exposure to the cold weather and kids. Maybe next year then. We bought a non-skier lift ticket and brought Cindy up to the top. It was incredible view. I will post some pictures soon. We also went to hot springs for � day. Imaging yourself soaking in an outside pool with temperature around 104 F and the snow is falling. Hehehe, it wasn�t snow at the time we were there. The whole trip was fun and relaxing.

Well, it is more than 8 months now since BMT. Cindy will have a broviac taken out tomorrow. The surgery is at 8 and then IVIG afterward. This is through a vein. OUCH!!! Cindy�s appetite is great. She also drinks lots of fluids. Overall, she looks real good and healthy. Her hairy face and body are falling out since a discontinued of cyclosporine 3-4 months ago. She is starting to look like her old self now. She did have a first post BMT haircut last week.

Angela is growing bigger everyday. She is a blessing to us. Most said all three look identical when they are 3-6 moths old. I compared pictures and they did look alike, a triplet. Brian still enjoys kindergarten. He wants to go to kindergarten club next year. This will keep him at school until 4.

Forgot to mention that I did survive the layoff. About 30% of work force were reduced here. It was a nerve cracking when my boss called everyone 1:1 to tell who is affected.

Last thing, I just learned 5 years old Henry (Neuroblastoma) here at TCH became an angel 2 weeks ago. Please pray for Henry and his family to get through these difficult times.

As the holidays approach, I want to wish all the best to everyone along with strength and courage that are needed to fight this long uphill battle.

Thursday, November 21, 2002 at 05:45 PM (CST)

HAPPY THANKSGIVING EVERYONE !!!

WE ARE THANKFUL TO HAVE OUR PRECIOUS CINDY STILL BE WITH US TODAY. WE WANT TO THANK FOR ALL YOUR THOUGHTS & PRAYERS AND OUR FAMILY MEMBERS' SUPPORT IN THE MOST DIFFICULT TIMES. FINALLY, WE WANT TO SAY SPECIAL THANK YOU TO THE UNKNOWN DONOR, DOCTORS AND NURSES THAT GAVE CINDY A SECOND CHANCE AT LIFE.

Sorry I did not update frequently as before. But things are real busied at home with baby Angela.

Cindy has a monthly clinic visit yesterday for IVIG and echo test. Things look GREAT. Lytes Profile show everything is normal. CBC is almost perfect. She used to have anemia but it is gone after transplant.

WBC = 7.6
HGB = 13.6
Platelet = 253
ANC = 4300

We are waiting for echo result to determine if Cindy will continue to have oxygen at night. The docs also plan to take Broviac out in the next several weeks due to infection risk. Cindy has been having some cough. I think she got from us. But other than that, she has no fever. She is eating and drinking well. That brings us some peace of mind. We took Brian and Cindy to Chuch E Cheese�s last weekend. They loved it. It has been a year since Cindy went there. She ran around and played game with joys. We were a little nervous at first because of virus she might get from other kids. But a smile on her face quickly stopped our worry. Our planned trip from Make-A-Wish might delay a bit. We plan to go in December (X-Mas) but the flights are all full. We might have to go sometimes in mid-January.

Angela is growing big and very healthy. She smiles a lot, especially in the morning. I hope to post some new pictures soon. One bad news thus, we were informed the cord blood is tested positive for Hepatitis B. So Angela probably carry this disease. Binh is Hepatitis B positive. Luckily, Brian and Cindy are not.

We finally received visa extension approved from INS for grandma Mau until Feb 2003. She will go back to Vietnam on Jan 29, 2002 just in time for lunar New Year.

We will have plenty of times this coming holiday. My company will shut down 1 week for Thanksgiving and 2 weeks for X-mas & New Year. This is to cut down cost. On top of that, there will be a layoff in early December. The rumor said 20% of the work force. I hope I will survive the layoff. Wish me luck.

Before I stop, I want to send my though and prayers to all the kids battling for cancer, especially Colby, Connor, Libbie, Conor and Riley.

I am real happy that Bella, Jake (TX), Jake (CO), Luke, Kayli, Zach, Gooch and Brian are all recovering well after transplant.

I am sorry that I did not have time to sign in your web page lately but you and the kids always on my mind.

Sunday, October 27, 2002 at 12:06 AM (CDT)

Cindy went the clinic yesterday for IVIG, dental checkup, chest x-ray
and CBC. No cavity and CBC still looks good. People at dental office
were impressed with Cindy's cooperation. X-ray and teeth cleaning
are
pieces of cake consider all the things she went through before. WBC =
6.1; HGB = 12.9; Platelet = 194 and ANC = 3300. I forgot to ask for
chest x-ray result. I assume it is O.K. since doctors did not bring
it up. Next visit is next month. Yeah!!! We have stopped IV fluids
overnight 2 weeks ago and lytes profile shows no problem. Cindy is no
longer wear diaper at night. One small problem with Cindy is some
lesions on her elbows and knees. She's been having these for two
weeks now. Doctors prescribed 2 % Ketaconazole scream (fungus) but it
did not seem to clear it. So yesterday, they wanted us to continue to
put Ketaconazole on the knees and 1% Hydrocortisone on the elbows and
call them back in a week. Right now, they do not know what causes
those lesions. They do not think it's from GVH. Anyone knows what
it
is, please let us know. Basically, these lesions are red in color and
have a round shape (~ 1cm diameter). They turn to darker color
overtime with a dry flaky look. It is hard to tell if they spreads
since they appear mostly on the knees and elbows. Only 2 are seen on
her butt.

Things are really busy at home with Angela. Binh has some infections
due to breast-feeding. She is taking antibiotic for 10 days. Overall,
Mom and Angela are doing well. Angela's weight is up to 10-11
pounds
now.

Cindy continues to amaze everybody. Doctors and nurses really impress
on how well she looks. At home, she is very active and very humor.
Last week after diner, I asked Cindy, "Can you wash dishes for
me?"
Cindy gave me a big smile and said, "Daddy, are you old already?
Are
you old yet?" We were all cracked up. She always says something
that
makes us laugh everyday. She loves to play with her little Angela
while Brian at school.

Uncle Thoai and aunt Hanh from Fall Church, Virgina (Yep, a sniper
area) came to visit us 2 weeks ago. They spent here a few days
before heading to California. It was great to see them. It'd been
awhile.

Please pray for Cindy's aunt Dzung for her up coming surgery. She
has
an enlarged thyroid on her neck. Doctors wanted to remove it since it
could become a cancer. She is Binh's younger sister.

Please continue to pray for children with cancer. Colby & Connor
recently relapsed. Riley & Conor newly diagnosed with JMML and plus
so many others���..

Tuesday, October 08, 2002 at 05:29 PM (CDT)

It�d been busy past weeks. We have the new baby. Binh names her Angela. She born on Sep 29 at 2:01 AM, weighing around 8.2 pounds. Binh went into labor at 7 PM (9/28) and was in lots of pain for 7 hours. It was tough labor for Binh as she kept telling me �No More�. No More�This is the last one.�. Long story short, Mom and the baby are doing well at home. Angela is wonderful and a cutie. She already drank 3 ounces of bottle milk only after 3 days. Binh plans to breast feeding for 6-12 months.

Both Brian and Cindy love Angela, no jealousy at all. They held, touched and kissed her many times a day. They like to help anything except �poop� diaper.

Things are going well with Cindy. As usual, she is very playful. She seems to grow stronger everyday. We have stopped steroid since last Thursday. We will watch closely for any loss of Cindy�s appetite. GVHD will be monitored closely with the stop of cyclosporine and steroid. So far, things are great. Can you believe it? We just passed 6 months post BMT for Cindy. Looking back and into the future, things (i.e. Relapse, med stuffs etc..) seem never end but hope for healthy life for Cindy is around the corner. Sometimes, we just could not believe what we went through and how we survive all the roller coasters of Pre/Post BMT. Everything seems like a dream. Well, so much for abstracted and contradicted thoughts.

Cindy has clinic visit this Wednesday. The docs have not called on echo test yet. It should be O.K. I guess. Until then, thanks for your prayers and thoughts for Cindy and our family.


BTW, CHECK OUT NEW PICTURES OF ANGELA.

Friday, September 27, 2002 at 12:22 PM (CDT)

Day 178: Cindy got IVIG and echo test last Wednesday. No echo result yet. I guess it�s OK since the docs have not called for an update. Overall, she is doing terrific. CBC continues to look good.

WBC = 7.6K ; HGB = 13.2; Platelet = 258K ; ANC = 6186; ALC = 1170

Medicine Stuffs: Steroid is tapering down to 3 mg every other day and will stop completely next week. Cindy�s weigh is up to 12.4 kg (27 pounds). She is up 2 pounds from 2 weeks ago. Yeah!!! Her appetite is still good. We also reduce IV fluid to 250 mL at night. This should helps Cindy not to wet the bed. BTW, Cindy is potty train a year ago. She only wears diaper at night now because of IV fluid.

New Baby??? Sorry, it�s not coming yet, but it is very close. Binh feels more and more uncomforted because of all the kicking inside. Well, we have not come up with any name yet. Anyone wants to suggest a name?

Brian is enjoying his school. He has some new friends already, especially Sabrina that he considers his girlfriend. Grandma Mau came back from California last week. She really has good times there. We hope to go on vacation soon once Cindy is off oxygen and Broviac line taken out.

Please continue to pray for Colby, Conor, Connor, Riley, Esperanza and many many other kids.

Saturday, September 14, 2002 at 11:22 AM (CDT)

Day 164: Good news is .........Nothing much to report about Cindy. She is eating well and very much a normal 3 years old girl. CIndy seems to eat better the past week but her weight is still around 12 KG. As long as she runs and plays, we will not not worry her weight that much. Another great news, we only have to go to the clinic every 2 weeks. Yeah!

Binh has gained about 55 pounds now. She really wants to have a baby now. An ultra sound last week showed this will be a big baby.

Grandma Mau went to Las Vegas and southern California with uncle Hung & aunt Dung last week. They will come back this Tuesday. This is a first pleasure trip for Grandma Mau since she came here to help us out with Cindy. Hope they have a great time there and win lots of money in Las Vegas.

There are many kids out there still fighting for their lives. Please say extra prayers for the kids and their families.

Thursday, September 05, 2002 at 06:09 PM (CDT)

Some quick update, Day 154: CBC from Yesterday,

WBC = 9.3K
HGB = 13.1
Platelet = 297K (new record)
ANC = 6310

Lytes Profiles - Everything is normal for 2 months now.


Cindy is doing very well. She is very playful and does talk alot. Her appetite has been stable but she still weight only 12 KG. I guess it's good as long as she is healthy. She will be off cyclesporine next week (YEAH). However, we will continue steroid 6 mg every other day until ....... maybe end of this month.

Brian has gone to kindergarten for a week now. He really enjoy the school. He said he got 100 pts on his test every single day. Hmm.... Grandma Mau has been taken Brian to school and back home. We live only 3 minutes walk from the school. Other than that, everything is great at HOME.

We get to know a few more JMML kids and their families. Please continue to pray for other children, especially Colby, Connor (newly relaspe), Conor (Canada, newly dx JMML). Our thoughs & prayers are with you all, always.

Thursday, August 29, 2002 at 05:57 PM (CDT)

Days 147: I took Cindy to the clinic for IVIG yesterday since Binh is getting more tired and fatigue as delivery day gets closer. IVIG infusion is painfully slow. We were there for 5 hours. CBC is good and stable. Something like,

WBC = 9.4k
HGB = 11.7
Platelets = 284k
ANC = 7k

Cyclosporine and steroid are tapering down slowly. They are alternating every other day. AM/PM = .45mL & .2 mL for Cyclosporine and 6 mg for steroid. Both will be off completely in 2-3 weeks. We also stop ampho nasal spray and Peridex (?). I was amazed how much ampho nasal spray cost, $236 and only last for 1 week. FYI, it helps to prevent fungus in the brain.

Cindy still eats well and has been slept through the night. Her new hobby is playing Mario Nintendo with Brian. They screamed, yelled and then fought over the game. Cindy would turn off a power switch whenever Brian would not let her play. And then they both cried when we intervened. A typical kid�s behavior you see in a normal family. And we are thankful to have a normal life in our family. We hope Cindy will continue to get stronger and stronger and JMML will just be a distance memory.

Well, Merry Elle from Make-A-Wish visited us last Tuesday. Cindy was granted a wish to Disney cruise. They will pay everything for a whole family, including Grandma Mau. We plan to go this December if Cindy gets permission to travel. Otherwise, next summer is fine with us.

One last thing, today is Brian�s first day at Kindergarden. He did very well on his test yesterday. He already knew all alphabets, numbers and colors. I cant wait to get home to see how Brian did his 1st day at school.

Tuesday, August 20, 2002 at 06:26 PM (CDT)

Quick Update (8/22): Test results came back ! Bone marrow showed 100% donor cells. EBV virus is very low level in blood. CAT scan tests shows no other enlarged lymph node in the body. Echo test for heart is also good. Finally, CBC yesterday: WBC = 8.9K ; HGB = 12.1 ; Platelets = 258K ; ANC = 5.9K

Please say extra prayers for little Colby. He has DLI infusion yesterday to fight back relapse.

Thanks for checking in.

Just find out more on EBV Virus (1), EBV Virus (2), EBV Virus (3). Click for more info.


Day 138: Cindy has a surgery last Friday to remove a lymph node. They also did a bone marrow biopsy. Poor Cindy has nothing to eat until 8 PM. She did have breakfast in the morning. To make the matter worst, it was a steroid day. We were called in after surgery and Cindy was crying in recovery room. She was so happy to see us. She then had a bowl of noodle soup (Pho) while we have to wait for 2 hours before being discharged.

The weekend went well. Cindy is now back to her old self, running and playing game with Brian all day long.

I got a call from Dr Quinones today about the results. I was very nervous when he explained the problem. Are you ready ??? Preliminary result shows no sign of leukemia cells in the bone marrow. However, a lymph node did have a virus called EBV. I don�t know what it stands for. Anyone feels free to fill me in. Phew, what a relief!

The plan is for Cindy to come tomorrow for CAT scan her full body. This to make sure no enlarged lymph node is hiding somewhere. Next is to have 4 weeks of antibiotic for Cindy to kill this EBV virus. Dr Quinones did mention EBV virus can be life threatening if it is out of control. Because Cindy is only 4 months out of BMT, her immune system is still weak to fight virus on her own.

The blood test is due back this Friday. This will tell us how severe of EVB virus in Cindy blood stream.

Well, we want to thank everyone for your prayers. Our special thanks to our JMML families for your positive though and up lifting messages while we waited for results.

P.S. We got approved from Cord Blood Registry (CBR) to store our new baby cord blood free of charge for 4 years. Ms Michelle Gullo from CBR is very professional and dedication. She got application forms and collection kit to us in no time. Everything was overnight express. Thank you Ms Gullo for your speedy response.

Tuesday, August 13, 2002 at 03:20 PM (CDT)

Update: Cindy visited the clinic on Wednesday and they found a lymph node on her neck. It's about 1.5 cm in diameter. I took Cindy in today for CT scan and a blood test afterward. There are several things that can cause enlarge lymph node. Infection, virus, and lastly Leukemia. I am hoping and praying this is not a sign of relapse. Doctors want to have a surgery for Cindy to remove a lymph and a bone marrow biopsy, either tomorrow or next Monday. Cindy has 100% donor cells a month ago and her CBC on Wed is very good. WBC 10.5K, Hemoglobin = 12.5, Platelet = 285K. Except this enlarge lymph node, Cindy is doing very well. With JMML or anything with cancer, you are basically living at a cliff or a slow timing bomb. Please pray for Cindy this is just a minor infection.


Days 123-130: Cindy is doing very well. Cyclosporine and steroid are gradually reduced. Binh only need to take Cindy to the clinic once a week. This makes mommy very happy as she is in 8th month of pregnancy. We have contacted Cord Blood Registry to save the umbilical cord for the new baby. We take no chance after what happened to our Cindy. And she might relapse in the future, so the cord blood is our backup. We wish we will never have to use this cord blood but life is so unpredictable.

My sister & her family from Dallas, TX visited us last week. Cindy & Brian have a blast playing with cousins Duy & Khoa. We have really great times seeing each other. Now Cindy & Brian want to come to TX in the future.

Brian is 5 now. Mom will go to the school nearby to enroll Brian in Kindergarten. School will start end of this month.

Please continue to pray for others fighting against cancer. Colby Cole is one of our JMML kids who relapsed recently. Please keep Colby & his family very high on your prayer list. Congratulation to Libbie who has BMT last month and is now engrafted with 100 % donor cells. Go Libbie !!!

Monday, August 05, 2002 at 10:05 AM (CDT)

Days 120-122: WE ARE HOME!!!

Thank you all your prayers for Cindy. We made it home yesterday afternoon. Cindy was so happy and very smart girl. She gave Nurse Kelly a big kiss on a cheek when she unhooked the line. Cindy knew it was time to go home. For all the times here, Cindy only ate food we brought for her. Hospital�s foods are getting old very quickly, especially in BMT unit.

All tests came back negative, so the low-grade fever is still unexplainable. There might be some virus that they did not test for. Last time Cindy has fever without having any virus, it turned out to be GVH. I am hoping this is not GVH. Platelets from yesterday dropped to 175K (229K 5 days ago), so we are keeping close eyes on it. Mom will take Cindy to the clinic for a follow up this PM. Before this setback, Cindy visit to the clinic was reduced to 1 time a week. Hopefully, this schedule holds starting next week. If everything goes as planned, Cindy will be off steroid and cyclosporine completely at the end of this month.

My sister Huong & Family from TX came to town last week. They came to visit Cindy at the hospital last Friday. I did not have a chance to see meet them yet. Anyway we are expecting them today at our house. I have not seen my 2 nephews Duy & Khoa, like 7-8 years.

Thursday, August 01, 2002 at 05:03 PM (CDT)

Day 113-119: Cindy has been great until today. I got a call from Binh @ lunch that Cindy has a fever (38.8 C). She did not eat anything today and complained about headache. Binh took Cindy to the hospital immediately. Cindy is currently getting antibiotic. A blood culture was also done to see any virus or bacteria. I am hoping this is not from fungus since we had seen kids died from it.

Cindy will be admitted to 5A unit and will stay there for tonight. Will post more when we learn more about it.

Thursday, July 25, 2002 at 11:05 AM (CDT)

Days 105 - 112 : Check out many new pictuces.....

I am very HAPPY to have no bad news to report. Cindy is doing GREAT. She really talks a lot nowadays and very playful. She played with Brian and competed with him with everything, i.e. eating, drinking & dressing �etc�.. even blowing nose. Cindy has been taken her meds very well. When she is in good mood, she would take 3 meds all at one. A big five to Cindy.

Grandma Mau is in process of extending her visa to stay with us for another 6 months. She has been helping us a lot in many ways. With a new baby coming our way soon, her present here is a big plus. Thank You Grandma for your loves and caring heart.

We have our first visitors from friends the past week, Dung & Han and Michael & Ana families (thanks Ana for the flower). We have been trying to not have visitors because of Cindy�s immune system. Only our close family members are our regular visitors.

I do not have CBC with me, but something like this, WBC = 12K & Platelets = 200+ K

Thanks for checking in. There are still many kids out there, fighting for their lives. So please continue to pray for them and their families.

Thursday, July 25, 2002 at 11:05 AM (CDT)

Days 105 - 112 : Check out many new pictuces.....

I am very HAPPY to have no bad news to report. Cindy is doing GREAT. She really talks a lot nowadays and very playful. She played with Brian and competed with him with everything, i.e. eating, drinking & dressing �etc�.. even blowing nose. Cindy has been taken her meds very well. When she is in good mood, she would take 3 meds all at one. A big five to Cindy.

Grandma Mau is in process of extending her visa to stay with us for another 6 months. She has been helping us a lot in many ways. With a new baby coming our way soon, her present here is a big plus. Thank You Grandma for your loves and caring heart.

We have our first visitors from friends the past week, Dung & Han and Michael & Ana families (thanks Ana for the flower). We have been trying to not have visitors because of Cindy�s immune system. Only our close family members are our regular visitors.

I do not have CBC with me, but something like this, WBC = 12K & Platelets = 200+ K

Thanks for checking in. There are still many kids out there, fighting for their lives. So please continue to pray for them and their families.

Monday, July 15, 2002 at 10:31 AM (CDT)

Update 7/18: Days 103 & 104: Let Celebrate !!!!! We have the best gift yesterday. Cindy's results came back with 99.99 + 0.01 % DONOR CELLS. We are thrilled and jubilant by the result. Thank you for all the best wishes and prayers for Cindy.

As you may know, JMML has a tendency of relapse quickly within 6 months after BMT. Cindy is winning half of the battle now. She is strong and doing very well. Last Monday she also had an echo test for her heart. The cardiac doctor is very please with Cindy�s heart. It is back to normal. Steroids is tapering down again this week. She now gets 12 mg and 3 mg every other day.

7/17 Counts: WBC = 12.4K, HGB = 11.9, PLATELET = 237K (NEW RECORD), ANC = 10.91 K


Days 97-102 : We celebrated Day 100 this weekend by taking Cindy to the mountain in our minivan. On Saturday, we went to Evergreen Lake for fishing. On Sunday, we went to Vail with Uncle Hung & Aunt Dung for sightseeing & walking around the town. Vail is a beautiful little town. We then stopped by Georgetown for fishing on our way back. We caught 2 BIG FISH. One is about the size of Brian, and other about Cindy�hehehe. We really have good time together. It�s good for us to get away from the heat as well. The weather in the mountain is very pleasant with beautiful scenery. One of the best part on our way up there is Cindy entertained us by singing nonstop for the whole trip. She demanded an applause after very song. Brian also sang a few songs and Cindy said, �Sing No Good� every time. It was very funny. Cindy loved to eat out now. She wanted to go to the restaurant after each trip. So, we went to Chinese restaurant on Saturday and have Pho (Vietnamese noodle) on Sunday. She ate like a horse.

We are starting to feel more and more comfortable with Cindy at home. When Cindy first got home, we felt like spending the whole day just giving meds, feeding and doing mouthcare. We have to keep closed eyes with Cindy all the time. We just feel like she is so fragile and a simple fall could harm her. FYI, Brian is a very active 5 years old boy. So all day long, they plays, jumping, climbing, running around, fighting over toys and teasing each other�you name it. But now, we can sit and relax while watching both of them, just like old days.

This is Cindy�s first milestone in the battle against JMML. Cindy has made this far because of all your prayers out there. Many thanks to our family, friends, JMML families, parents with sick child (we get to know) and those we never met that have kept Cindy in your prayers. The road is still rough and bumpy. So please continue to pray for Cindy and many kids with cancer.

Tuesday, July 09, 2002 at 11:55 AM (CDT)

Update 7/10: The Doctor called yesterday evening and informed us the preliminary result of Cindy's bone marrow. It looked.......GOOD (Whew). The final result will take another 10 days or so.

Cindy's counts are great. WBC =10.4K; Platelets = 202K; Hemoglobin = 12.2; ANC = 7800. WBC went up to 20K last week due to infection. She has running nose and minor cough 2 weeks ago but nothing serious.

Days 90-96: Cindy is doing GREAT at home. She is very playful with so much energy. She occasionally talked nonstop that drove everyone crazy. She remembers many children songs and sang about 10 songs the other day to prove it. We were very surprise with her memory. It was so much joys to see her happy and well. Last night, her heart pulses are around 100. It was the best we�d seen since Cindy went home. Her steroid dose will be decrease sometimes this week. She is now getting 12 mg and 9 mg every other day.

We have a mini birthday celebration for Brian and Mom. Cindy got to blow the candle as well. I will post some pictures soon.

Today mom took Cindy to the clinic for bone marrow biopsy. It schedules at 9:30AM. Please pray for Cindy to have 100% donor cells. We will be very nervous when results come back.

Tuesday, July 02, 2002 at 11:06 AM (CDT)

Update: Check out new pictures of Grandma Mau & Brian & Cindy. Taken from Webcam, so quality is not so good.

Days 83-89: Today is Brian�s Birthday and Mom�s Birthday this Saturday. We plan to have a mini celebration this coming weekend. Cindy continues to do very well. Her appetite is very good since we changed steroid to AM. As usual, Cindy and Brian ran around, jumping, laughing and off course fighting over toys occasionally. Cindy went to the clinic yesterday. All tests came back negative for infection. Still, She has some mucus but no fever. Her heart test yesterday showed much improvement from last week. Cindy appointment is now down to 3 times/week from 5. This would be a big plus for mom since her pregnancy is in 6 months now. We are approaching Day 100 real soon. This is a milestone for BMT patient BUT NOT for JMML. Cindy will have a bone marrow biopsy at Day 100 to determine donor cell. We will be very nervous when this result comes back. We just find out another JMML kid, Colby who just celebrated Day 100 and then receiving devastating news of RELAPSE a few days later. It is a lot tougher to get this news the second time around. Our hearts and prayers go out to the Coles� Family.

Mom, Brian, Grandma and aunt Dung went to Six Flags Elitch Gardens on Sunday. They have lots of fun at the park. Mom talked Grandma into riding some of most scary rides. Guess what? The Brave Grandma went on most of them. As for aunt Dung, she went on a Tower Of Doom (a 22-story plunge of free-fall ride) with Grandma and never tried another ride.

Last Thursday Counts: WBC = 15.3K ; HGB = 11.3 ; Platelet = 182K ; ANC = 11.9 K

Wednesday, June 26, 2002 at 10:20 AM (CDT)

Days 78-82: Cindy is HOME for 6 days now and still doing great. NO FEVER! We changed her steroid to AM from PM starting yesterday. This is better since her appetite improved instantly. Brian and Cindy have fun playing together. They ran around the house nonstop. We occasionally have to sit them down. Taking care both of them is physically challenge. Yesterday, Brian has a cold(?) so we sent him away to stay with uncle Hung & Aunt Dung along with grandma. Cindy missed Brian alot and kept asking for him the whole day.

Cindy is on oxygen 24 hours now because of no improvement in heart test last Monday. The team thought oxygen will help her heart gradually. Cindy has been taken her med well. She only vomited one time so far.

Last Friday Counts: WBC = 8.8K ; HGB = 10.2 (norm 11.5-14.5); Platelet = 131K (Yippy) ; ANC = 6512.

Great News: All our JMML kids (recent BMT) are at HOME now. As you may know, JMML is a very dangerous type of leukemia with low survival rate. Making this far is encouraging for all of us. Thanks for all your prayers out there.

Friday, June 21, 2002 at 03:14 PM (CDT)

Days 76-77: Cindy came HOME yesterday. She and Brian have a blast playing and off course fighting over toys. Cindy is in much better shape than the last time she was discharged. She ran around while Brian was chasing her without feeling tired or grasping for air. She had not has any fever for several weeks now. Last night she slept through the whole night. For now, she still needs oxygen to relax her heartbeat and getting 10 hours of IV fluid at night. The team decided to increase steroid dose to 12 mg/day instead of every other day. The plan is to check her heart again next Monday for any sign of improvement. Last results still show a minor irregular heartbeat.

Mom will take Cindy to the clinic this AM for CBC and infusion of steroid.

Wednesday, June 19, 2002 at 12:45 PM (CDT)

Days 74 - 76 1/2: We have a meeting yesterday with TCH team. The tentative day to be discharged is TOMORROW. Cindy is still doing very well. Cindy got a pass to go home for few hours minus Brian. Here is the story. We sent him to Child Care at the hospital when we went to the meeting. At the end, a doctor came in and said Brian is in the emergency for allergic reaction. He ate peanut butter and got itchy all over his face and could not breathe. We rushed to emergency and found Brian with his face swollen, a oxygen mask and a needle in his hand�s vein. A nurse gave him Benadryl via IV for his itchy. We asked him what did he ate but he kept shaking his head. We later found out that he was making a cone with peanut butter and bird seed on the outside, but he did not eat anything. Anyway, Brian has allergic reaction to seafood and certain kind of pollens. In this case, we suspect it was from a bird �s seed. So, Cindy went home with Mom and Grandma while I was with Brian in the emergency room. Brian is fine now. We�d seen this before when he ate seafood. We�d been waiting for Brian to be five to get him test for allergic reaction. Next month is his 5th Birthday.

Back to Cindy, she is off isolation because of negative results in her stool. Yesterday was too short so she will get a pass again today to go home. Thanks for checking in.

Monday, June 17, 2002 at 10:07 AM (CDT)

Days 71-73: I�d been busy playing with Cindy over the weekend. She would not let me surfing or using laptop. She knows how to hit power switch if I try to ignore her. The day to be discharged is getting closer. We might go home this Wednesday if things go smoothly. Cindy still did great. She played and ran around the room. Because of suspected stool, she is back in isolation since Wednesday. Uncle Hung & Aunt Dung brought Cindy�s favorite food, Pho yesterday. Thanks Hung & Dung! She finished a big bowl for dinner. Even on low steroid dose, (12 mg every other day), Cindy is still eating well.

We are getting closer to Day 100. This is the first major milestone in the battle against JMML. Please pray for Cindy to cruise through without setback. She will have another bone marrow biopsy at Day 100 to determine % of donor cell.

CBC was done on Friday: WBC = 9.5K; Platelets = 94K (hooray); Hemoglobin = 9.5

Happy Father Day! Especially with all Dads are fighting along with their sick kids.

Thursday, June 13, 2002 at 12:28 AM (CDT)

Days 68-70: What can I say? Cindy looks wonderful. She is no longer wanted a wagon ride. Instead, she walked and ran around the hospital on her own few times a day. She is very active girl now. Food and fluid intake are still good. She has been off TPN for 10 days now. She only gets extra fluid at night. Her hairs are growing back fast now with the help (side effect) from cyclosporine. CBC (blood count) test is now only done 2x a week.

Cindy was really happy to see Brian today. They have a great times playing and chasing each other. This was a normal scene 7 months ago. I felt so good and bless to see their smiles and happy faces. While all the good news with Cindy, I am very sad to find out this evening that little girl Morgan, next to Cindy room, became an ANGEL. Please say extra prayers for Morgan�s family.

P.S. Thank you Bella for your beautiful necklace you gave to Cindy. Bella is Cindy�s friend in BMT and currently waiting for engraftment. Please pray for Bella for her counts up and other special children that are battling cancer.

Monday, June 10, 2002 at 11:07 AM (CDT)

Days 65�67 : Cindy is having great times. We took her out in wagon ride around hospital over the weekend and she enjoyed every minute of it. She was running, jumping just like a normal active 3 years old girl. She has abundant of energy to prove it. Uncle Hung & aunt Dung, Grandma and both of us took turn to entertain and pulling wagon ride for Cindy. We are talking 4-5 hours on Sat & Sun. Thanks to Mr. Steroid, her appetite remains good. Currently, she is on a low dose of steroid and getting high blood pressure med. She now only needs oxygen when she sleeps. Not that her oxygen level is low, but the team wants to keep it on at night so it helps her lung and heart beat.

We met the team last Friday and look like Cindy will be able to go HOME this week. Her counts are still OK except hemoglobin is slowly dropping. It was 9.5 yesterday (12 a week ago). Platelets are stabilized at 70-80K. It is only 33 more days until the magical & critical Day 100. Please keep praying for Cindy and other kids to win their battle against cancer, as this is a long and roller-coaster journey. Thanks for checking in and signing our guest book.

Thu & Binh

Friday, June 07, 2002 at 10:40 AM (CDT)

Day 64: It was uneventful the last 3 days. Cindy is doing well and her appetite still good. Steroid dose has been tapering down slowly. Hopefully when it�s completely off, she still wants to eat. It has been almost 2 weeks that Cindy does not need any x-fusion. She is making blood and platelets on her own. Since ANC is stable, I took it out on the chart so it is easy to see & follow platelets.

We will meet with the TCH team today afternoon along with social worker in our county. The plan is have a nurse (with help from Adam County) comes to our house to assist in taking care of Cindy. This will be a big help since Binh is 6 months pregnant now. We are looking to take Cindy home soon, maybe this weekend. We will find out more this PM.

P.S. Cindy received gifts from Nick's mom and Jessica Nguyen from A3M. Nick has ALL and currently at day 30+ post BMT. He ceblerated his 16th birthday yesterday. Jessica is Vietnamese Case Manager of A3M who set up a drive for Cindy in South CA. Thank You both for your wonderful gifts.

Day 14: As expected, Cindy starts to have diarrhea for the whole day. The vomiting and poor appetites continue as usual. All of these are considered normal at this point. Cindy managed to eat 2 bites of rice & meat for dinner. Not much but at least Cindy still remember how to eat. Cindy continues to be blessed of having no mouth sores, fever or bad reaction to transfusions(platelet&red cell). We are thankful for that. WBC was 0.2 again so that�s good. Once WBC hits 0.5, it will shoot up quickly. But again, we will start worrying about GVHD which can cause serious complication . Statistically, cord blood x-plant has much less complication than using bone marrow. So we are hopeful and praying Cindy will have minimal GVHD . Good news, Cindy liver test came back with good results. Other than that, I do not have much detail of the test.

Prayers Please! Luke Do , another JMML kid at day 30 post-BMT, is having serious GVHD . Please have Luke high on your prayer list.

Many thanks for your love and prayers.

Tuesday, April 16, 2002 at 11:07 PM (CDT)

Day 13: We noticed a light yellow color of Cindy�s eyes today. Doctors took a look and decided to have CT scan on Cindy�s liver this PM. Right now, there are several possibilities that can cause this. 1) Antibiotics 2) Reaction of Busulfan (chemo) may damage liver 3) GVHD (unlikely at this point) and etc.. The most likely cause per Dr Giller might be from Busulfan. Anyhow, it is too early to speculate so doctors will closely monitor the situation and perform specific liver test for the next couple days.

Cindy refused to eat and drink anything today. But she was still up and played. No mouth sores and fever, so that is good. The nurses said by this time Cindy did not have mouth sores then it is very likely that she wont get one. Her WBC jumped to 0.2 today. This can be a 1st sign of engraftment ???. Will see the next several days. Good night.

Tuesday, April 16, 2002 at 12:17 PM (CDT)

Day 12: Another good day passed by without incident. Cindy vomited only once and her appetite was still very poor. Grandma watched Cindy @ AM and mom & Brian @ PM. Auntie Dung has been taken grandma to the hospital early in the morning so I can go to work. Thanks Dung for scarifying your extra sleep. Cindy was so happy to see Brian that she hugged and held him and would not let go of Brian. It was very touching and emotional moments for all of us. They played toys, sat and watched video together for hours. It has been days they have not seen each other since we did not let Brian into the room as a precaution. I wish I were there to take pictures of Cindy & Brian together.

Good News! I just found out grandma could stay here with us until the end of August. She got a tourist visa to come here for 3 months. But when she came, INS gave her 6 months on I-94 so I did not know which day she has to leave the country. Anyway, INS said that they don�t look at visa but I-94. Her present here has meant a lot to us, not just physically but emotionally as well. Imagine taking care of Brian and Cindy with two of us is tough to do.

Before I end, I like to share pictures with everyone. A tribute to those parents caring for their sick child.




Cheers,

P.S. I am getting fancy here. :))

Monday, April 15, 2002 at 10:38 AM (CDT)

Day 11: Another uneventful day passed. I wish it would be like this for the next 100 days, but it�s unlikely. Anyway, grandma and uncle Hung watched Cindy AM and I took over PM. Cindy has routine schedule of 3 mouth cares a day, take a bath and clean out her Broviac lines. Just like past days, she vomited few times and watched video through out the day.Cindy seemed a little more fatigue but not much. She was up and played, ate some lasagna for dinner and has a few sips of sterile water. We have stopped giving her milk last week since it makes her throw up more. Cindy took a nap at 6:30 and did not wake up until 10. Not again Cindy! Guess what, I left at 12:30 AM and she was still awake watching movie. Off course, I have to sneak out quietly and let nurse Pam knew. Cindy will probably get upset when she finds out. I�ll know when I come this PM.

This coming week, we will be looking for a first sign of engraftment. Graft-vs-Host disease will be closely watched by doctors. Wish us luck and thank you for your prayers.

Saturday, April 13, 2002 at 11:55 PM (CDT)

Day 10: Today is like yesterday. Mom came in the morning and I came in the evening. So far, Cindy vomited twice and ate very little. For those are wondering, Cindy receives continuously of fluid and TPN (total parental nutrition) through IV daily. This AM, mom took Cindy out to exercise on the treadmill. Isn�t she amazing? Day 10 and she has not have mouth sores and still up playing. I am anxiously waiting for the 1st sign of engraftment and the recovery of her counrs. We�d been here too long and I can�t wait to take Cindy home. Well, I have 1 bad news to report. Luke in San Jose is having RSV (Respiratory Virus). Please pray for Luke that his RSV is not serious. Please also keep Kayli in your prayers. She is at day 5 post-BMT. Look like Cindy will stay up late again. She is watching Jingle All The Way. Time for me to get another cup of coffee.

Day 9: It was uneventful day. Mom was with Cindy all day until I came from work. Cindy only vomited once and ate 5-6 bites of rice with meat for dinner. It�s not much but it�s a start. Cindy was in good mood late PM that she sang couple songs for nurse Pam. As usual, Cindy was up very late and went to sleep at 1:00 AM. TGIF, I don�t have to work tomorrow. She spent most of the evening watching movies. I think she watched most of the movies they have here. Dr Albano stopped by for a visit and was really impressed with Cindy condition. Who not? I believe your prayers are helping Cindy. The next 100 days journey will be a roller coaster and we are asking that you continue to keep Cindy in your prayers. Thank you all.

Friday, April 12, 2002 at 12:46 AM (CDT)

Day 8: It's 11 PM and Cindy is watching George The Jungle. She probably watched this movie 100 of times already. Don't know what gets into her but she has been sleeping very late the past few days. Daylight saving time does not help either. Mom brought some doughnuts from Krispy Kreme but Cindy only has a few bites. She still vomited occasionally but nothing serious. It is day # 8 and doctors and nurses here are amazed of Cindy condition. She is the only one with no isolation in BMT unit. This meant she can goes out her room and plays in the playroom. Cindy was "wireless" for 2 hours this PM so I took her out to the parent lounge for 1 hour. We spent time together drawing and coloring picture using laptop. And off course she wanted to watch her on video clips that I taped few days ago. I think Cindy though the laptop is her new toy. Well got to go back to Cindy. Hopefully she is asleep now.

Thursday, April 11, 2002 at 10:17 AM (CDT)

Day 7: I am posting a day late but here it is.....It was uneventful day except a few vomits but this is expected. Grandma and mom split the shift to watched Cindy all day as I took a break to go home after work. Cindy continues to do well except her appetite is still poor. She received platelet x-fusion and has no reaction from it. All the vomiting so far did not seem to weaken or bother her. Every time she vomited, she came right back and played with full energy. Cindy still not develop mouth sores yet. I heard really bad stuffs about kids with mouth sores. So I am keeping my fingers cross.

Wednesday, April 10, 2002 at 12:37 AM (CDT)

Day 6: Cindy continued to eat very little, but it�s better than nothing. Most kids probably have stopped eating few days ago. WBC = 0.3 today but doctors said it does not mean anything right now. It would take at least another week before they expect engraftment takes place. I got off work 1 hour early and came to relieve mom. She has been with Cindy all day and looked tired. Cindy vomited a few times AM with a lot of mucus. Other than that, she is holding up very well. Cindy�s weight is steady and has no mouth sores, thanks god. I guess 3 times/day mouth care did helped. So far, no major setback or unfortunate events since her BMT. We want to thank you for keeping Cindy in your prayers. As you might know, JMML has a high rate of relapse, so we are taking it day by day and enjoying every minute with Cindy. Both of us have been spent little time with Brian recently and we missed him dearly. Cindy also missed Brian. Every time she called home, she always wanted to talk with Brian and hugged him when he came here briefly. We try not to have Brian comes into the room since kids x-fer virus very easily to each other. I have good news to report that Luke (www.caringbrigde.com/ca/lukedo) , dx with JMML, is recovering well. He is at days 20 post-BMT. Another JMML girl, Kayli (www.caringbridge.com/ca/kayli) has BMT yesterday. Happy Re-Birthday Kayli. As I am writing this, Cindy just vomited (twice since I came). But she is up and watching Lion King II. And she wants to play with the laptop again. Good Night.

P.S. It's 11:30 and Cindy is still awake. Poor me cause I am sleepy.... :(

Tuesday, April 09, 2002 at 01:19 AM (CDT)

Day 5: Cindy slept until 10:30 AM today. She looked more tired and did not eat anything. Grandma stayed with Cindy most of the day. Cindy got blood x-fusion while she took a nap for 2 hours in the evening. Mom came and brought her some rice. Cindy woke up and finally ate rice with soy sauce. She now looked more energetic and she was up playing. That's my girl Cindy. I brought my laptop with a webcam and we spent times capturing her pictures and made video clips. Cindy really enjoyed watching her on tape as I have to play her video clips over and over again. News of the day, Cindy WBC today is 0.2, it�s double from yesterday. I don�t know if it means anything yet since I did not have a change to discuss with Cindy�s doctor. Anyway, I did not expect to see her WBC to change this quick, unless the new stem cells are working? We are only in Day 5. I am anxiously waiting for her counts tomorrow. I got the webcam setup and now requesting for TCH to connect the intranet in Cindy�s room. TCH will let me know the answer tomorrow. I hate to use dail-up phone since it�s very slow, especially broadcasting live image. And we have to set up 2 different accounts, 1 uses @ hospital and other @ home. And it locks up the phone too. Well, we�ll see tomorrow. Check out Cindy new pic. Good night everyone.

Sunday, April 07, 2002 at 11:10 PM (CDT)

Day 4: Cindy did not eat much today. The chemo did its job by making her not to feel hungry. Fortunately, Cindy still felt fine all day. She played and laughed with everyone that came to visit her. We are blessed that she has not felt sick yet considering this is DAY 4. Grandma and uncle Hung came early and stayed with Cindy in the morning. We went to church at noon and came to the hospital right afterward. We prayed for Cindy, Luke, Kayli, Colby, Zachary, Brain, Jacob, Kyle, Isabella and many other cancer kids to be protected by god and all will win this battle. We are asking everyone to continue to keep them in your daily prayers. Thank You All !

Aunti Lien visited Cindy for few hours and Cindy wouldn't let her to go home. Aunt Lien finally have to sneak out quitely without a goodbye kiss. Grandma, mom, uncle Hung and aunt Dung took Brian to see Ice Age movie and went out for dinner afterward. Mom said Brian really enjoyed the movie as he laughed the whole way. Uncle/aunt Thoai&Hanh from D.C. and Uncle/Aunt Tin&Huong with cousins Duy & Khoa from TX were able to see Cindy and us through our webcam tonight. Everyone said Cindy looked very healthy. Too bad we could not talked since PC in the playroom does not have speakers. Hopefully I can get my laptop set up soon. Well, it is mouth care time for Cindy before she fells asleep.

Saturday, April 06, 2002 at 11:26 PM (CST)

Day 3: Cindy's appetite is decreasing. She has a few bites in AM and 1 egg rolls for dinner, but both times she vomited all out. We noticed Cindy has more mucus. This is a sign of severe mouth sores are coming. She did end up vomiting 4-5 times today. They started TPN 2 days ago so Cindy is getting enough nutrition. The eating for now is to help her stomach to keep working. WBC today is 0.7 and moving down quickly. Other than vomiting, Cindy still has enough energy to play & laugh with nurse Veronica and went to the playroom with Brian. I have the feeling that she might start to feel sick tomorrow. Mom has enough time to make some Vietnamese egg rolls to share with the nurses. And they loved it (I think). I got the webcam set up in the playroom but PC does not have speakers. It will be a few more days to set up in Cindy's room. Will let every one knows the broadcast time (webcam) soon. Yahoo ID will be: " FALE2000 "

Friday, April 05, 2002 at 11:19 PM (CST)

Day 2: Cindy'd been doing great all day. Thanks god she still ate and played. Cousin Huy stopped by to play with Cindy for few hours. Huy has been visiting Cindy every week. Thanks Huy for coming and play with Cindy. Mom came very early and was with Cindy all day. I came right to the hospital after work so mom can go home and rest. FYI, Binh is 3 months pregnant We are expecting our 3rd one in September. I have to admit that Binh has been very strong and holding up very well. Beside taking care Cindy, Binh prepared and cooked all Cindy's favorite food. For the past 2 weeks, Binh was up until 1-2 AM to cook so I can bring the food to Cindy early in the morning. I got to play with Cindy for few hours this PM and she is now asleep. Cindy just received platelet as it dropped down to 12. Well, have to go now. Thanks for checking in and good night.

Friday, April 05, 2002 at 09:07 AM (CST)

Day 1: Cindy is amazing. She still ate 3x a day. She vomited a lillte bit but nothing serious. She spent most of the day watching Vietnamese music video (Thuy Nga) with dad & mom. She received blood x-fusion around 2pm since her hemoglobin (HGB) dropped down to 9.9. She developed some rash few hours later but she'OK now. BTW, I change the HGB to RBC on the chart to make the scale smaller. Basically, HGB = 3 * RBC. Cindy will receive x-fusion for platelet and blood if platelet < 20 and HGB < 10. Cindy still has enough energy to excercise on the treadnmill for 10 minutes. We are real happy she is still doing well. The doctor warned that Cindy will feel sick in the next couple days since her WBC dropped from 3.1 to 2. So we are preparing for the worst. Dr Albano stopped by for a visit. She really suprised how well Cindy'd been holding up. Since Cindy BMT is from cord blood, it would have less complication than using a bone marrow. We are hoping this holds true. I got to see Luke on webcam and chat with Lam for 30 minutes. It is a wonderful technology. I just bought a webcam so stay tune. I am hoping to get all set up this weekend so everyone can see Cindy. Auvoir ....

Wednesday, April 03, 2002 at 05:43 PM (CST)

Day 0: Cindy has a big breakfast this morning and looked fantastic. She ate rice with pork rib and drank some 150 mL of milk. She then brushed her teeth and finished her mouth care. She'd been doing her mouth care 3 times/day since admitted to BMT. This is nescessary to prevent mouth sores. At 11:00, they brough in a bag of stem cell (from cord blood). It looks very brigh red. This is Cindy's life here. The procedure took about 1 hour through her IV while she was watching Toy Story. Half an hour later, she felt to sleep for 3 hours. She then woke up and wanted to eat rice with pork rib again. She's still looking terrific. She even got to excercise for 5 minutes on the treadmill. Cindy is playing with mom right now. We really enjoy every minute while she is healthy now. We know the next couple days will not be easy. So please keep Cindy in your prayers.

Tuesday, April 02, 2002 at 08:58 PM (CST)

Day -1: Today is a rest day for Cindy. This to ensure all the chemo's she received out of her body prior to stem cell x-plant. Cindy has ox-tail soup (mom cooked) for breakfast&lunch, cheese sandwich for diner. She continues to do great consider 7 days of chemo. She did not seem to loose her appetite but it may change the next 2 weeks. Cindy was really happy when they took out the foley. She made me to call home so she can tell mom about this. She gets a habbit when she talks on the phone; She always ask "Is that Mommy ? or Daddy?" (depend whom she talks to) million of times. She keeps repeating this question over and over. But she sounds really cute on the phone. ATG still has a lasting effect on Cindy as she occasionally get hive. So they gave her benadryl to help the itchy. I found out that using ice and apply to affected area did help her itching alot. Tomorrow is a big day. They schedule to have stem cell x-plant at 11:00 AM. Infection, host-vs-graft disease and complication will be closely watched by the doctors. Please pray for Cindy for the next crucial 100 days.

Monday, April 01, 2002 at 10:30 PM (CST)

Day -2: Cindy gave us a scare this early morning again. Cindy's line at the T-joint was pulled when she climbed down to chair next to her bed and tried to answer the phone. This happened when she was by herself alone. Blood spilled all over her bed when grandma came. Cindy probably cried so much that she lost her voice. It seemed to me when this happened, Cindy got scare and cried very loud but it probably took awhile before anyone came to her room. I was upset and disappointed that no one heard Cindy cried. This incident really make us very nervous and uncomfortable every time we leave her bed side or coming home at night. Luckily, Cindy did not pull her broviac. Anyway, Cindy got a crib bed now for her own safety.

ATG will be done at 10 PM tonight and that is it. No more chemo. Cindy is doing OK today except for that incident. Tomorrow they will take out the foley pending if they see any blood in her urine. Mom is with Cindy all day since I got a little cough. Hopefully, I get better after a good night sleep as I plan to come very early tomorrow.

Sunday, March 31, 2002 at 07:44 PM (CST)

Day -3: I got to the hospital at 7:30 but Cindy already awoke. She was sitting up on her bed and playing by herself. I was told she woke up at 4. She looked much better and really happy to see me. Cindy got a basket of easter gift and did not care much about all the candies. FYI, both Brian and Cindy are not candy lover, they only eat a certain type of candy. She has Pho (Vietnamese beef noodle) again for breakfast and then took a bath. They started to give her chemo at 11 and I was little nervous. Grandma came at noon to watch Cindy so two of us went to church for Easter. When we came back, Cindy was asleep but no vomiting. Mom is staying with Cindy this PM and she is holding up well so far. Mom just feeded Cindy for a late lunch and guess what? She ate Pho again. This is her favorite food. Tomorrow is the last day of chemo (Melphalan) for Cindy and foley catheter will be taken out on Tuesday. Wednesday is a BIG DAY and it's coming fast.

Day -4: It was a very busy day, so I am posting a day late.

Saturday was a rough day for Cindy. One tube coming out and the other coming in. Cindy was very upset when the nurses inserted the foley catheter. After it was done, she was still crying for 15 min and very angry. I have to hold her on my lap to calm her down. Then came Cytoxin and ATG(antithymocyte globulin) which Cindy did not react well. She ate some rice for breakfast and Pho (Vietnamese beef noodle) for lunch but everything came out as she spent most of the day vomiting. For those who's wondering, hospital's food is getting old very quickly, consider we have been here for 7 weeks and counting. Cindy gave me a scare when I took her to the parent lounge. I put her down and told her to stand still so I can turn the light on. When I did, she forgot that she has a big tube on her leg (connected to a foley to drain her urine) and walked. Just a split second, She felt and hit her fore-head on the floor. She got a big bump and I frantically call for help. The doctor checked it out and luckily, her platelet was 135k. When platelet is low, it is very high risk for internal bleeding even with a slight fall or bump. Anyway, we managed to put some ice on and the bum got much smaller now. By late evening, she did not want anything else and developed a fever. They gave her Tylenol to control it. At 10:00 PM (3 hours after last chemo), Cindy got better and so her fever. She was able to sleep better but I have to hold her hand all the times. Mom went home around 11 PM and I got to stay with her until 1 AM to make sure she is OK. So it was not a good day for all of us.

Friday, March 29, 2002 at 10:33 PM (CST)

Day -5:

Happy Easter !!!

Not much going on today. Cindy is still doing well. She will receive last dose of Busulfan at midnight and that is it. No more NG tube for her. Tomorrow, they will insert the foley catheter and start 2 days of Cytoxin. The foley catheter will be as painful as the NG tube. Brian is bugging me to go to sleep with him since mom is with Cindy now. Again, Happy Easter everyone.

Thursday, March 28, 2002 at 11:09 PM (CST)

Day -6: WBC = 2.1; HGB = 10.1; Platelet = 120 (yahooo); Cindy's blood count is slowly dropping due to the effect of chemo. Cindy continued to do fine today. She was able to eat and drink with good amount. Grandma spent the whole day with Cindy while mom stayed home for a break. I came in at 5:30 after work and she was so glad to see dad. I spent the rest of the evening with Cindy and now she is sleeping. So far, Cindy is cruising through her 3 days of chemo. Tomorrow is the last day of Busulfan and so is the NG tube. Tough road ahead, please keep Cindy in your prayers. Luke is at day 10 post BMT and Kayli will have BMT next week or two, please keep Luke and Kayli in your prayers as well. Good night everyone.

Wednesday, March 27, 2002 at 04:48 PM (CST)

Update: Hemoglobin = 11, platelets = 128. This is unbelievable even those Cindy was drawn lots of blood on last Monday (3 giant syringes) and at least 7 times Tuesday morning. Offcourse, all those numbers will come down after Cindy finishes all the chemo but it indicates that she's in excellent shape for BMT.

Day -7: Cindy is still doing well. She ate, drank and played as normal. However, I had been warned that Busulfan has a delay effect of about 1 1/2 week. I came in 8:00 AM this mornig and Cindy was up already. She was so happy to see dad, so I gave her a big hug. Later, I was told Cindy woke up at 3:00 AM and did not sleep until I came. Poor Cindy, sorry that dad & mom were not there for you at night.

It has been very active day for Cindy. After finished her breakfast, I took her to the playroom. Of all the toys, she like to draw, coloring and puzzle. Sorry, no truck, car or barbie for her. She then took a bath, watched movie, ate lunch then back to the playroom again. As expected, she is sleeping now. Mom just came to take over evening shift. Thanks for checking in.

Tuesday, March 26, 2002 at 02:13 PM (CST)

FINALLY, THIS IS COUNT DOWN DAY !!!

Day -8: Cindy was admitted to BMT unit yesterday at 9:00 AM to get ready for her 1st chemo today. Her counts were all good (WBC= 3.5K; Hemoglobin = 10.5; platelets 107; NO BLAST) and she was in a good shape for xplant. I arrived at the hospital at 4:45 AM this morning to be with Cindy since she was scheduled to have NG tube install through her nose at 5:15 AM. Last night was the first Cindy has to sleep at the hospital alone and will be for the next several weeks until she is well. At 6:00 AM, she received her 1st dose of Busulfan. This will be given for 4 times a day for 4 days through NG tube. After this, Cindy will receive 2 dose of 1 hour IV infusions over 2 days then follow with 3 doses of Melphalan for 1 day.

It was very painful to witness the tube went to her nose, throat and down to the stomach. She cried and screamed as it took 3 nurses and myself to finally get the tube in. But it only took 1 minute of comfort from dad, she went back to sleep until 9:00 AM. I'm very proud of my little girl. Well, after waking up, Cindy ate all her scrambled eggs and almost finished all half pint milk. She then had macaroni cheese and rice for lunch. WOW, Her appetite seems to pick up for some reason.

Last weekend, Cindy went home for 2 days. We spent some wonderful times together. This was possible because all her counts improved. This was good for Cindy and us to get ready for BMT. It will be long fight once she's in transplant. One important thing I would like to bring up. For those pregnant moms out there, there is a service to collect and store your newborn's umbilical cord blood for the potential future use of your family. The cost is around $1500 for collection at birth and $95 for annual storage cost. However, if you do not plan to keep it, please make sure to donate your baby cord blood. Otherwise, someone's life that can be saved by your child cord blood being thrown away. Cindy is fortunated to have a matched cord blood that was donated. Thank you very much, DONOR. What you did, possibly have saved my child.

Well, Mom and grandma are with Cindy now. I need to go home to take some needed rest. Hospital policy only allow 2 (max) in Cindy's room at the same time. I will "TRY" update on daily basis from now on so keep checking back.

Wednesday, March 20, 2002 at 10:51 AM (CST)

Well, just a quick update. The time has come. Next Tuesday 26, Cindy will be transferred to BMT room for admission. She will receive 3 different types of chemo for 7 days, 1 day rest and then transplant on April 3. We have 2 hours talk yesterday with Dr Quinones about all the possibilities of side effect from the chemo, host-versus-graft disease, and many other things, you name it. Dr Quinones and his colleagues will be responsible for BMT. In the next few days, I'll go in more detail on Cindy's treatment (European protocol) for future reference that might be useful for parents with JMML kid.

Cindy is doing great. Her platelet is up to 40+ (all on her own). Her appetite is slowly picked up as her sores improving. This is very good news because you want Cindy to be in her best shape prior to BMT.

I have 2 bad news to report. 1) My sister in law Hanh, has miscarry after 2 months pregnant. Sorry Anh Thoai & Chi Hanh, best wishes on the next one. 2) A couple we met at the hospital has a 5 years old son Henry Vu with nueroblast cancer, was admitted to the hospital yesterday for relapse. Henry has dx and tx 3 years ago and been cancer free for 2 years. This is very sadden and devastated news for the parents. Our deepest condolence to the Vu family. Please keep Henry in your prayers as his change for survival is very slim now.

Monday, March 18, 2002 at 11:38 AM (CST)

As I am writing this, Luke Do, another JMML patient, is at day 0 (BMT). Please pray hard for Luke and his family in this critical time. The next 100 days will be very crucial for Luke as his body responding to the new stem cells.

Cindy was clear to go home for 4 hrs on Sunday. We took her home at 1:00 and returned at 4:30. It was a first time in a month Cindy got to go home. Cindy smiled, danced, and sang along while watching Thuy Nga Paris Video (Vietnamese music), then running around with Brian, just like old days. We were a little nervous while she was running around a table, afraid she might felt and hit her head. Other than that, we enjoyed every minute together. She then ate some meatballs and Goi Cuon (VN spring rolls) that her mom made. It was painful to hear when Brian asked, �Daddy, is Cindy well and stay home for good now? �. Time flew by and it was time I have to take Cindy back to the hospital. At first, Cindy cried and refused but it�s time to say good bye to HOME. For a moment and somehow Cindy knew and realized that she got to go for her own good. I put a jacket on her without resistance and we left. We definitely will do it again before her BMT. Hopefully, next time Cindy can go home a little longer.

Today, Cindy�s counts are great, platelets = 23, hemoglobin = 8.9. Even those counts are considered low, so far this is the best counts she has without any transfusion for the last 3 days. Cindy still has sores that prevent her from eating much. The good news is the urine and culture tests came back negative so doctors plan to scale down her antibiotic. Cindy is still in isolation so no playing at the playroom until all tests came back negative. Well, that�s it for now.

Friday, March 15, 2002 at 12:53 PM (CST)

Wow, Cindy has been in the hospital for 4 weeks now and we are preparing another 3 months to be in the hospital for post-BMT. So far, there�s still no sign of blast since Cindy received a second chemo. Cindy�s counts are still low, so she has blood and platelet transfusions almost daily. She ate very little for the past few days due to nasty cold sores in her tongue and lip. We tried different things but unable to get her to eat much. The new antibiotic she received should help her sores. Hopefully, it will heal soon. Even those Cindy received enough nutrition through IV, you still want her to eat something to keep her stomach working with solid food. BTW, Cindy is in isolation again. This means she can�t leave the room because the doctors afraid of spreading virus to other kids. So, it has been a very slow week because you got stuck with 4 walls, watching TV and movies. Luckily, this hospital has a library of kid movies. Anyhow, it's still painfully slow. Cindy was drawn a lot of blood yesterday for testing. This to ensure she is healthy enough for coming BMT. It could be another 2-4 weeks before we know for sure the exact day.

Nurse Veronica suggested us to take Cindy home for few hours a day so she can play and get around the house (a change in atmosphere). It takes us 30 minutes each way from the hospital to our house. If doctors allow Cindy to leave for 3 hours, we might take Cindy home this weekend. We�ll see.

Monday, March 11, 2002 at 10:37 AM (CST)

Cindy continues to do well with her 2nd chemo (ARA-c and Fludarabine). So far, no blast is seen in her counts after 10 days post chemo. Cindy will undergo various tests to check her organs for any side effect from the chemo. BMT decision will be made from week to week for now. Hopefully, her counts will stable for next 2-3 weeks so we can go ahead with BMT.

Cindy's other grandmother from San jose came last Saturday. So both her grandmothers are here to support and help us. Cindy is no longer in isolation, so we�ve been taken her out to the playroom and around the hospital. She played, ate (OK), screamed, sang and even jumped up and down on her bed. Cindy looked much better as her spleen and liver almost back to normal. Uncle Hung volunteered to stay overnight with Cindy on Friday so we can go home to get needed rest and � hmm ...I forgot. Thanks Hung. Since Cindy was admitted in the hospital almost 4 weeks ago, we are like the Sun and Moon. We�ve been alternated in staying with Cindy at night. Well, that�s a start. Maybe we can get cousin Huy, aunt Dung or someone else to stay with Cindy overnight one of these days. JK..hehehe...but we take it if offer. Well that is it for now. Thanks for all the helps and supports.

Tuesday, March 05, 2002 at 03:49 PM (CST)

Cindy's grandmother from Vietnam arrived here on Thursday, 2/28/02, much earlier than we expected.We were very surprise that she was able to make it here without a glitch despite not speaking any English. Since then, our morale was much higher. Cindy was able to eat more the last 2 days and her appetite is picking up. She loves egg (over easy) so we�ve been coming down to cafeteria early morning to get it. Cindy�s counts continue to improve and stabilize with zero blast. We are crossing our finger for next few days and continue to monitor her counts closely. If everything goes well the next 2 weeks, Cindy might schedule for admission for transplant. Cindy�s spleen is partially working and the other part is now dead. This was due to insufficient flow of oxygen (RBC) through the spleen (I forgot a medical term for this). Anyway, instead of splenectomy, Cindy is doing it by herself. So from now on, Cindy will need extra antibiotic depend on how much of her spleen functionality. Other than that, this is not a life threatening. Cindy�s tummy begins to get smaller and does not seem to bother her like 2 weeks ago. So we are very happy to see her recovery making some progress. Cindy continue to loose her hair so we cut her hair real short, well�..like daddy. Actually, she really like her new hair cut. Cindy has been confined to her room for the past week since she�s in isolation. We are hoping her infection test coming back negative so she can go out to play and walk. Ant Lien & Dung, uncle Tuan & Hung, and cousin Huy has been visited Cindy regularly, bring us food, entertained Cindy and Brian while we need some break. We are very thankful for all the helps and comforting. BTW, we need volunteer to do our tax return for this year since we don't have any spare time. JK. :-))

Wednesday, February 27, 2002 at 03:01 PM (CST)

A bone marrow drive for Cindy on Sunday was very sucessful. We have about 200 peolpe signed up. Thank you father Hoa, Kelly Telleen from Bonfils, everyone that helps the drive and espcially all the potential donors. What you did is give life to all the cancer patients, not just Cindy.

Cindy's blood count jump all over the past few days. She has 50+ % blast in blood on Tuesday which worried the doctors very much. A high percent blast during BMT will have a higher % of relapse rate. Cindy has a second round of chemo on Monday night for 5 days to control her blast. If everthing goes well, Cindy will have BMT (5/6 match cord blood) in 3-4 weeks. Please keep praying for Cindy.

Cindy's grandmother from Vietnam just got her visa yesterday. She will arrive here next week. Her present will help our family enormously. Brian (Cindy brother) has a cold so we sent him to our friend Loan. We do not want Cindy to get virus from Brian. Thank you Loan for looking after Brian.

Cindy has been in the hospital for 2 weeks and it seems a long time. We got so many supports from our family and friends. It is beyond our words of how much we want to thank you all. BTW, if anyone needs to contact us, the hospital # is 303-861-8888, room # 552. Look likes Cindy will be here for a while.

Friday February 22, 2002 6:50 PM CST

Cindy finished her 1st round of chemo Tuesday and her condition improved slowly each day. Dr Doenecke (Cindy's pediatrics doctor at Kaiser) dropped by to visit Cindy again. Dr Doenecke has been very supportive and helpful since Cindy got sick. He has helped to speed up all the paper work with Kaiser so Cindy can get her BMT as quickly as possible. We personally want to thank DR Doenecke for his efforts. On Thursday, Cindy is starting to take Retinoic Acid until her BMT to control her blood cell. Cindy might go home this Monday pending on her blood count. Currently, Cindy's platelets and hemoglobin are still very low regardless how many times she has a transfusion. So we do not know when Cindy will able to go home.

There'd been lots of call on our answering machine from many people wanting to help Cindy. Unfortunately, we were not at home to take or return your calls. We like to use this opportunity to thank you all from the bottom of our heart. We are holding the drive for Cindy this Sunday 2/24/02 at the Vietnamese Catholic church in Wheatridge, CO from 11:00AM to 4:00PM. Please come and register to become a bone marrow donor. You can save Cindy's life and other cancer patients' lives too.

Sunday February 17, 2002 6:07 PM CST

Cindy is a lot better today and her spleen appears to be smaller. She has a good sleep last night. White count is down to 6k but platelet count is still low (2k). However, Cindy did not have any bleeding for the past 2 days. Cindy will have a transfusion soon since her hemoglobin is down to 6.5k. This is a fifth day since Cindy was admitted to the hospital. Cindy's older brother Brian had been very good boy. He spent most of his time playing game and toys and did not bother anybody. Actually, he seems to enjoy all his time at the hospital. We are blessed that Cindy is being treated at one of the best children hospital in the US. The doctors and nurses here are wonderful. We wanted to thank Dr Trobaugh and Dr. Albano for their professional work and treatment for Cindy for the past 2 months. Well, I got to back to Cindy, aunt Thiem and aunt Tuyet are visiting.

Thu

Saturday February 16, 2002 11:05 PM CST

Dear All,

Finally, I was able to go home tonight to update Cindy's condition and get some good sleep (I hope).

Wednesday: Cindy was hospitalized as her leukemia got worst. The platelet count was down to 4k and her white count was up to 35k when we brought her in. The doctors decided to keep Cindy at the hospital to monitor her closely. Cindy then received several transfusions to stablize her condition.However, Cindy's liver and spleen got so big that she has trouble of sleeping at night. It was so painful that we have to ask for a painkiller through IV for her.

Thursday: Cindy has another platelet transfusion so a broviac tube can be installed. The doctors want to start the 1st round of chemotherapy tonight in hope to get Cindy's spleen smaller and to control Cindy's blood count. While Cindy was in surgery for broviac, the bone marrow tissue was taken out so doctors can analyze the current phase of her Leukemia. I stayed with Cindy tonight so mom can go home and get some rest. Cindy slept well and did not complain about her stomach.

Friday: Cindy's appetite got better after a good night sleep. Maybe the chemotherapy started to work. Still the platelet count kept dropping even after several transfusions. The doctors believed that it got stuck in Cindy's enlarged spleen. In the next few days, if Cindy's blood count is not getting better and her spleen still enlarge, removing the spleen is the only option. The bone marrow test came back today showed Cindy has 6% blast. Anything greater than 10% will cause a high relapse rate when BMT. So , this is a bit of good news.

Saturday: Cindy's blood count was getting better. White count was down to 17K but platelet count was still low at 4K. Her spleen appeared improved a little bit. Cindy did not received any transfusion today. She ate some rice with pork (mom cooked) for breafast and lunch. So we're hoping that her spleen can be saved before her BMT in the next 3-4 weeks.

We wanted to thank aunt Lien & uncle Tuan, aunt Dung & uncle Hung, aunt Thiem, Cindy's cousin Huy for their supports and visiting Cindy at the hospital. We got some home cooked food from aunt Dung and aunt Thiem. Lot of people tried to call us at home but was unable to reach us. Thank you all for caring about Cindy. Please continue to keep Cindy in your prayers.

Thu

Tuesday February 12, 2002 1:21 PM CST

We got a bad news yesterday. Cindy's condition is getting worst. Her liver and spleen are bigger, an indication of leukemia is progressing. Cindy WBC (white blood count) is at 22k but platelets count is dangerously low at 8. This makes the doctors very concern. Cindy has a tranfusion yesterday to bring her platelets count up. She has been eating very little and nocticeably weak for the past few days. We need to bring Cindy in this Thursday to discuss about BMT as soon as next month. This will shorten the time to find a donor. Please pray for someone out there with a perfect match.

We got help from Ms Hang Huynh, Vietnamese Task Force Director for Asians for Miracle Marrow Matches (A3M). Ms Hang wants to set up "Drives" for Cindy in southern California. If you would like to volunteer to assist Ms Hang for the Drives, please contact her at 213-473-1660 , toll free 888-236-4673 Ext 166 or email: hhuynh@fc.ltsc.org . Thank you Ms Hang for your help.

We just update pictures from Cindy's Birthday.

Thu & Binh

Monday February 11, 2002 1:17 AM CST

Saturday night Feb 9,2002, we celebrated Cindy birthday at home. Cindy's uncles, aunts, cousins and friends all came with big presents. Cindy was very happy and joyful. She loved to sing happy birthday song and blew the candle. In fact, we all have to do it 3 times before Cindy cut her cake. Cindy then opened her presents with big smile. We will have Cindy's birthday pictures on here soon for everyone to see, stay tune.

Cindy lost her appetite for the past few days. Don't know if it resulted from the medicine (chemotherapy) Cindy currently took. Mom will take Cindy to the doctors today to check her blood count again. Hopefully, we get some good news on her bone marrow search. With the help from Dr Lam Do, there is one potential 6/6 �gserologic�h match and probably one or two individual who is a B locus mis-match (ie 5/6 serologic match) at Japanese wed site. Thank you for helping Cindy Dr Do, Unfortunately, there is some setback with Dr Lam 's son, Luke with his BMT, Please keep Luke in your prayers as his leukemia is getting worst.

BTW, thank you everyone for coming to Cindy's birthday. Your loves for Cindy are appreciated.

Thu & Binh

Tuesday February 5, 2002 12:17 AM CST

Cindy had a blood count yesterday and it got a little worst than last week. Her WBC jumped to 24 from 18 (normal 4-12). Plantelet count decreased to 35 from 75 (normal 150-500) which explains Cindy's bruise that we noticed recently. The doctors suggest to have a first round of chemotherapy for Cindy to control her blood count while we are waiting for a donor. We should find out if there is a match donor for Cindy in about 2 weeks. The good news is that her splene and liver are not getting any bigger.

We wanted to say thank you for all the supports we'd been received from our friends and family members. Your courage words have given us the strength while we're going through this ordeal. Please continue to keep Cindy in your prayers.

We would like to ask everyone to pray for another child, his name is Luke Do. He is only 21 months old with JMML, the same disease with Cindy. Luke's father is Vietnamese-American. His mother is of Japanese, Irish, and English descent. Luke is scheduled for admission for transplant on 2/11/02. You also can visit Luke's Web site at http://www.caringbridge.com/ca/lukedo/ or http://www.saveluke.org. Please pray for Luke to be sucessful with his transplant and recovery.

Friday February 1, 2002 11:30 AM CST

Cindy is doing well right now. She eats and plays with her brother Brian with lots of energy. Recently, we noticed Cindy can easily get bruised. We have schedule to bring Cindy to the hospital to draw her blood next Monday, Feb 4. From now on, this will be a weekly routine so doctors can monitor Cindy�s blood counts and health.

The next couple months will be difficult, so we need all the supports we can get from our family members and friends. Cindy�s grandmother from Vietnam is trying to get a tourist visa to come to the US. This will greatly help our family, especially Cindy�s mom.

We will try to update this web page on regular basis to inform all our friends and family members on Cindy's heath and treatment. Thanks for visiting Cindy web site.

Thu & Binh

Friday February 1, 2002 10:31 AM CST

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