History

Journal History

Friday, January 30, 2004 1:19 AM CST

New Photos added!!

22 Months post transplant!!

Wow, it has been over four months since we last did an update... SORRY :-)
This will be a long one since we have so much to tell. Let’s see, where to start... We last updated in September... Luke had a bone marrow aspirate on 10-07-03 and for the first time ever, it showed 100onor cells. The procedure was done under general anesthesia. It’s always painful to make Luke NPO after midnight and go through the whole ordeal... Just bring back too many bad memories... Luke took his first field trip with his classmates to a Pumpkin Patch in October. The whole family went with Luke on this special occasion. I think that it was two days after the bone marrow procedure. Next was our big trip to Seattle to visit Luke’s Donor and family. What a wonderful trip. We flew the whole family including grandma Ikuko to Seattle on Wednesday 10-15-03. Packing for and flying with two young kids is never fun. We got to the airport and was picking up our luggage when Randy Yamanaka spotted us. He said “you guys look exactly like your pictures.” Randy look likes himself as well... We barely got everything into Randy’s minivan. Dad had to sit side-way in the third row seat since we had so much stuffs. The weather was slightly drizzly and cool. Randy took us to our hotel and we sat down for a chat. We were initially not going to talk for long; but, there were so much to share and express that, I think, we kept Randy longer than we should had. Randy picked us up the next day at our hotel. Our first stop was police headquarter in downtown Seattle. We saw the state-of-the-art, brand new, police headquarter. We met the police Chief and some of Randy’s friends. We took pictures with the Chief and Luke and Hope were given “police bears.” We then made a visit to the Airspace Museum. I quite enjoyed all the classic and history making airplanes. Luke, Hope and Sarah did not care too much for these high-tech toys. Grandma Ikuko went to meet up with an old time friend that she has not seen in almost 20 years... On our way back to the hotel after the museum visit, we had to stop by a McDonald to get chicken nuggets for Luke and Hope. We sat out in the parking lot enjoying french fries and nuggets. This was a special moments for Luke, our family and Randy... We had a restful night in the Grand Hyatt Seattle (beautiful bathrooms!). The next day, Friday, We stop by Puget Sounds Blood Bank to thank a couple of people who were instrumental in helping Randy with his battle with the city of Seattle. We then made a stop by the Space Needle and went up to the top so that Luke could feel the wind blows through his short hair. We then made a stop by Pike’s Market for a little shopping. Next, we made it to the Blitz (grandma Ikuko long-time friend) for a late lunch. Wow, the food was wonderful. Mr. Blitz shared with us stories about when Sarah was 5 yrs old; apparently, Sarah was spoiled as a baby as well... Thank you Mr. & Mrs. Blitz for your most generous gifts for Luke & Hope... We returned to our hotel for a rest. Saturday came. We started our day with a visit to FAO Schawtz toy store for some gifts. Saturday evening was the fund raising event for Nicole Howard family (www.helpnicole.org) and the Mavin Foundation (www.mavinfoundation.org). We met Nicole and her whole families. Nicole’s father and Randy Yamanaka, Luke’s donor, are both police officers for the city of Seattle (what a small world huh). Nicole has leukemia as well and is currently doing well on medication. She has been waiting for a donor for way too long... The dinner was nice. I had to make a 10 minutes speech about Luke, our family and our journey through transplant... The event raised over 50K for the two organization. Sunday came. Randy picked us up to go for Sunday brunch at a special restaurant on the water front with views of the Space Needle in the background. We had the special opportunity to meet Randy’s parents, his wife Maggie, and daughter Ellie and Maggie’s father. There were so much to talk about that I barely had the chance to eat... How I see it, there will always be opportunity to eat good foods; but, meeting and talking with special people always takes precedence. In one of our conversation, I learned that the Yamanaka, many generation back, has ties with Mongolia. I know that my family, many generation back, has origin from China as well. Maybe, that is how Randy was the match for Luke... Randy let us borrow his mini-van for the day. We return to the hotel for a rest. Ikuko met up with the Blitz. We drove to Bellview to have dinner with a friend from med school who we have not seen for more than a decade. Thank you Marnie, Salma and kids for your hospitality. It’s good to know that good people don’t change with time. Monday was our last day in beautiful Seattle. It hardly sprinkle since we arrived on Wednesday. We saw the sun on several occasions. Today, it’s raining “cats and dogs.” I guess, this is more typical weather for Seattle. You can also say that Seattle is sad that we were leaving... We packed the night before and left all the luggage at the hotel. Randy meet us in the front lobby. Our first stop was at King 5 news station. We did not have an appointment. Randy use the outside telephone to speak to the receptionist. After a few minutes, we were taken inside and interviewed for the evening news. The piece aired that night and was very well done. Thank you Linda B. and King 5. Next, we went to China town for lunch. Our next appointment was with the mayor; unfortunately, he was out sick. We stop by city hall to say thank you to one of the council-women. City council was in session and we had the chance for Randy and our family to thanks all the city council members for changing city law making possible for Randy to donate bone marrow for Luke. The city ordinance and later Governor Locke’s executive order allow for 5 days of paid time off if someone go to donate bone marrow, organs, or other life-saving procedures. Because of Randy, the law was changed. Governor Locke designated May 07, 2002 as Sergeant Randall Yamanaka appreciation day for the state of Washington (Wow!). Randy gave us a copy of the ceremony whereby the Governor sign into law his executive order. I don’t know how many times I have watched this tape. Does anyone know what is the law in their state? Does anyone know what is the law in California? It’s sad to say, but, I still don’t know where the law stands in CA. Should this be a national law? Should you be penalize by your employer for going to donate bone marrow to save someone else life?? We made it home to sunny California...

A colleague of ours learned of a young Vietnamese man in New Mexico who was in need of a bone marrow transplant but does not have a donor. This was a reminder for us that the same problem still exist; not enough potential ethnic minorities donor in the pool. Together with the AADP (www.aadp.org), Drs. Minhtam Nelson, Huy Trinh, Ngoc Nguyen, Khanh Tran, and others, publicized, organized and held a bone marrow drive at Regional Medical Center in mid November. We recruited 124 new potential “lottery ticket” holder to the registry. We are doing a drive 02-01 at the Vietnamese Spring Festival and plan on targeting some of the local colleges for more drives as well... November was gray in that I had the sad opportunity to attend a memorial for Jarred (www.caringbridge.org/ca/jaydog)

Thanksgiving, Christmas, and New year came and went quickly. Thanksgiving was quite at our house with Sarah’s family. Thank you Jack & Rosa for the wonderful Christmas dinner. Thank you everyone for all of your generous gifts for Luke, Hope and our family... Our family had some special guest visited on Christmas eve. The Nguyen family form Colorado. Cindy Nguyen (www.caringbridge.org/co/cindy) had the same leukemia as Luke and was transplanted about a month later using donated umbilical cord blood. Cindy is doing very well. It was very special to meet up with another Vietnamese family afflicted with the same, rare and aggressive, leukemia. We spent the afternoon exchanging stories and had dinner at our favorite local restaurants. Thank you Cindy and family for your special visit. We certainly will visit if we are ever in Colorado. Please come by when you are visiting family again in San Jose.

Luke and Hope are both doing well. Luke just had blood test on 01-13-04. The results are good. Luke continues in preschool. He is picking up more words. He can counts to 10 and sometimes to 15 with help. He knows the basic colors; but often confuses purple and blue. He can says choo choo, apple, “fly” (for butterfly), trying to say carrots, dog, “phant” for elephant, frog, can’t say “gold fish”, horse, instead of igloo, he says “choo choo”, jelly (skip bean), kite, lion (“roarh”), monkey. We are teaching him his alphabet with the alphabet train puzzle. He does not like the monkey to be attached to the lion. Luke is very particular in his ways and quite OCD (obsessive compulsive). He only obeys commands when he wants to... Our family just joined the YMCA and Luke has already went swimming about 3 times. He loves the water. His legs are getting stronger. He grew almost 11 cm(4.3 in) since his last clinic visits. He went from 32 to about 35 lbs. We can’t believe how tall he has grown... Hope is doing well. She is in daycare five half days a week. She has learned how to grab and snatch toys and food from Luke and saying “mine.” The concept of “sharing” for Luke an Hope means it belong to “me.” It’s nice to see that both Luke and Hope are growing up. They sometimes give each other hugs and kisses. Just within the last few days, Luke is taking Hope’s hand and leading her around the house. Just yesterday, we can play ring-around-the-rosie as a whole family holding hands...

Well, it has taken me almost two weeks to write this... and I should end here. Don’t know when I will update again, probably, aim for quarterly... Will try to post new pictures soon.

Happy Lunar New Year to everyone,
From Luke, Hope, Sarah & Lam

Wednesday, September 24, 2003 1:28 AM CDT

18 Months and 5 Days post transplant:

Finally an update... Even new pictures... YEAH!!! Well, it only took two months for me to add the photos from our Disney vacation. Sorry, just couldn't plug that scanner into the computer... After Luke went to sleep tonight (Saturday), I got out of bed to catch up with our JMML families when my pager went off at around mid-night. A patient of mine, on vacation in Canada, had lost her luggage, including her medication... I had to write a prescription, attach the scanner to my laptop, install the fax software to my computer, and fax the prescription to Canada... Hey, guess what, the scanner is attached to my laptop; perfect time to scan in some pictures to post to the web. So, here you are, new pictures.... I hope that the pictures will make you smile.... Our beautiful children....

Since the last time I had a chance to write, let's see, what major things happened? Luke started pre-school. YEAH!! Two years ago, pre-school was not even on the map... Luke is in a special pre-school. His eight other classmates all have some speech difficulties. Luke goes to school from Tuesday through Friday, from 8:30 to 11:30. Daddy and Hope take Luke to school on all the days except on Thursday when Mommy and Hope take Luke. Getting up early and trying to use the potty gets Luke all cranky... While eating breakfast and watching TV, daddy would put on sunscreen and special long sleeves shirt and pants with built in SPF 30. Luke wears a wide-brim hat as well. We pack a cooler with 3 bottles of apple juice, one sippy cup and one straw-container juices. He only drink from the bottle though... We pack snacks in a little "Thomas" lunch bag. Our "Thomas" backpack contains diapers and wipes together with our snacks bag. Extra clothing is always available at school in case we have an accident. School was difficult the first week. The first day daddy stay with Luke and he lasted one hour. The second day, two hours with Daddy. The third day two hours with daddy waiting in the parking lot. The fourth day daddy came back at the two hours mark and took Luke out for recess. This is probably the first time Luke was allow to run around with other kids in the full sun in the last two years... By the end of the first week, Luke was able to stay the whole three hours; of course, Luke was still crying in the morning when he gets drop off. Luke now has the routine down and he quite enjoy school. One day, after daddy buckle up both Luke and Hope, the van wouldn't start. The door was ajar and the battery was drained. Luke started crying because he wanted to go to school. Mom had to came back from work for daddy to jump-start the van to take Luke to school... Luke is the slowest and most behaviorally challenged child in his class; but hey, after what he has been through, to even be in pre-school is truly a miracle... Daddy is so proud of you Luke... When I came home from work on Friday, Luke came up to me and said "Hi". This is the first time that I can remember Luke saying "Hi;" and so clearly. "Bye-Bye" was the only word that Luke usually speak... The other day, out of the blue, he said "broccoli". He can say "cookie, kirkle (for circle)" fairly well... In term of potty training, we try to get him to use the potty in the morning and after waking up from his afternoon nap. Usually, it's a struggle; but sometimes he cooperates without much fuss. He is still on the bottle... This is a hard one; but, at night, he is down to 75iluted apple juice. Physically, he is running and his legs are getting stronger; though, still not normal strength...

Hope is now quite the "drama queen." She will be two soon. She is enjoying time spend alone with her daddy when brother Luke is in pre-school. We often go upstairs to read and play and go outside to look at the flowers, etc...

Yesterday (Friday), we did the "Light-the-Night" walk. Thanks Vinh, Anna, Gupta, Cherry, Dianna, Sarah, and Ikuko for walking with us... This is a fund raising event for the Leukemia and Lymphoma Society. We didn't raise much funds this year. Actually, we weren't even going to do the walk at all; but, at the last minute, we decided to do the walk anyway... I'm glad we did... Great news, next month, we are going to Seattle to visit Luke's donor, Randy Yamaka, and family. The Mavin Foundation, www.mavinfoundation.org, a non-profit group that targets "mix-race" issues, including the lack of potential bone marrow donor on the NMDP database, is inviting us up for their fund raising function. We get to meet Randy and family for the first time in person... It will be quite a memorable trip.

Luke recently restarted his immunizations (from the beginning)- OUCH... He is schedule for a bone marrow biopsy October 7. This is his 1.5 yrs post transplant biopsy. It will be an all day event as usual... Life is never totally normal for our family. Just recently, Sarah thought that Luke was looking more pale. We took the whole family to go get Luke's blood drawn. The results was OK; his blood count was a little lower than before; but, nothing alarming. The results of the previous MRI showed that his brain look normal. Some of his veins are still occluded; but, he has formed collaterals to re-rout the flow of blood to his heart. I guess that you can say that we are far enough out from transplant to be able to take a deep breath and have time to concern ourselves with "normal daily activities;" yet, how can life be totally normal when you are constantly reminded of leukemia and the devastating effects it have. Since my last post, two other JMML children have became Angel... I can't even imagine the pain that their family is going through...

To my JMML family, I'm sorry that I have not been able to do an update for so long. I have been to quite... I read all the post on our site; but, do not get the opportunity to reply. I feel so numb at time and cannot respond... To see/read about the pain and suffering that our children have to go through and the lost of our most precious gift can sometime be overwhelming... I welcome ALL the new members to our support group... I am deeply sadden by our families whose children recently became Angel... I am sorry that I cannot provide more support to you all at this time... I am thankful for Niki, Dana, Dannette and everyone else who continues to provides support to our family... Part of this posting is to give HOPE to new JMML families who recently started their battle with this leukemia... Like I stated above, we are far enough away from transplant that we are no longer holding our breath. We actually can take deep breaths now... I think that at the five-year mark post-transplant, I will breath normally again and shave my beard... Keep up Hope; the battle can be won...

Sleepless in San Jose ;-)=

Sunday, July 20, 2003 4:10 AM CDT

16 months after transplant:

Hi All:

It's been 2 months since my last update. As they say, no news is usually good news... Thanks for checking in on Luke and our family...

Our trip to Disney Land was fun. My most worry was the drive down and back. Thanks to the video system that we had installed in the mini-van, Luke and Hope did well with the drive. We made 3 stops on the way down and only 2 on the way back. Luke had a few tantrums, wanting to get out of the car seat; but, overall, they did much better than I would have thought. At Disney Land, the kids did enjoyed themselves. Luke and Hope liked the light parades (saw it twice), the Disney parades, the merry-go-round (I think Luke rode it 6-8 times), tea-cup-ride (once), It's-a-small-world ride, the train and monorail, etc.... Mostly, we did the "a kiddie rides" as they are still kiddies... We would wake up early in the morning, had breakfast, and go to the park. Mommy would push Hope in her stroller. Grandma Ikuko would push Luke's stroller while daddy hold the umbrella. This is in addition to whole body sunscreen and sunshades on the stroller. Once it gets hot toward 11 or 12, we would go back to the hotel and take a long nap. As soon as Luke would wake up from his nap, he would want to get in the stroller and go back to the park again. He definately know the routine by the second day. It was so cute to see him wanting to go and go... We would grab a bite to eat and would stay until about 10 or 11 pm at the park before retiring again. The walk back to the hotel in the cool temperature of the night was quite pleasant... Overall, we did a good job keeping Luke out of the sun and he had no skin GVHD as a result of our trip. As you can see, for the adults, the trip was quite busy... We did managed to catch dinner at the Rainforest Cafe, watch the Fantasmic light shows, lots of fire-works display (it was the July 4th weekend), etc.; best of all, it was watching Luke and Hope enjoying themselves. We all definately deserved the break... Now, I just need a vacation from our vacation... The films are being develope and I will post some pics as I get them back... Work was there when we got back and catching up at work delayed my posting till tonight... Once we got back on Saturday, we were not quite ready for Luke's brain MRI scheduled on the following Tuesday. He had blood drawn before the MRI as well. It was a long long day. Luke was made to fast from 8am to about 5pm. We were supposed to be on the schedule at 11:15. We didn't get into the MRI suite until after 2. The poor kid just couldn't understand why we were starving him of food and liquids... Luke had some very major tantrums that reminded me of the days when he was on steroids, had gut GVHD, and was trying to jump out of the hospital bed or pulling the IV bags from the IV pole to try to drink the fluids... Mom couldn't help much as she had to tend with Hope. The whole family came to the appointment, as we no longer have a nanny or any extra help... The results of the CBC was a little scary as there were some schistocytes on the smear... It's probably just an over-read; but, it brought back bad memories of TTP and low platelets and clottings and gut GVHD... We will know the result of the MRI next Tuesday when we have our clinic appointment. We will probably re-do the blood test as well then...

Luke continues to do well. He is getting stronger everyday. He is running very fast now. He climbs the stairs well. Not yet able to jump; but, soon. Forgot to mention that we went swimming at a friend house (Thanks Sue) and Luke just love it... We will definately have to take him swimming more often... He is learning more new words such as "book", "boat", "cake", and "door open." We have not made much grounds in term of toilet training or weaning from the bottle. He reluctanly use the potty in the morning and after his nap, not consistently yet. We are making the holes on the nipples bigger and diluting his apple juice at night... Luke and Hope are more like brother and sister now, enjoying each others company with only occasional squabble... We are so proud of you Luke and Hope!!!

So much has happened to our extended JMML families since my last update. Luke's JMML brother, Colby Cole(http://www.caringbridge.org/pa/colby), became an angle on June 12 and Luke's JMML sister, Riley Belcher (www.caringbridge.org/ri/riley), became an angle on June 30. Although biologically I aged one additional year on June 13, emotionally it feels like 5 or 10 years... It wasn't much of a birthday to celebrate when one of your JMML family members just became an Angel... Each time something major happened to our JMML families, we are reminded of how JMML has greatly affected us... Our support group welcomes several more new families... Some of the families are going through transplants, some are going through their second transplant and others are struggling with chronic complication...

In closing, we feel very blessed to have our precious Luke with us today and doing well. We ask that you continue to pray for Luke and all the other JMML children and families in their battle with leukemia; especially those who recently lost a love one... Goodnight...

Wednesday, May 28, 2003 0:33 AM CDT

14 Months after transplant:

Hello to all of Luke's family and friends... Sorry it's been quite a while since we last did an update... To make up for this, we have posted new pictures... YEAH...

Since we last wrote, there have been several major joyful events in our story. Firstly, we have made contact with Luke's donor. Sergeant Randy Yamanaka of the Seattle Police Department is Luke's earth angel. By giving some of his bone marrow, Sergeant Yamanaka saved Luke's life. Out of about 5 million people, Randy was the only person closet match (5/6) to Luke. Both of Randy's parents are Japanese. It's truly a miracle that Randy was Luke's donor since Luke is only 25% Japanese. Luke is 75% Asian and 25% Caucasian. We would like to ask a favor of those reading Luke's Journal to either send Randy an e-mail at randall.yamanaka@seattle.gov, give him a ring at his work at (206) 684-8909, or send him a card to c/o Sergeant Randy Yamanaka to West Precinct, 810 Virginia Street, Seattle, WA 98101-1307 to thank him for saving Luke's life. About 7 years ago, "a lady came to my work and asked us to join the bone marrow registry." "Although I am afraid of needle,..., I had no good reason not to join..." These are Randy's word. About 7 years ago, I was at a Vietnamese Children's Festival in downtown San Jose. Our booth was next to the Asian American Donor Program (www.AADP.org) or the American Red Cross booth when I was ask to join the registry. They were looking for a bone marrow donor for another Asian child. I also had no good reason not to join. Sarah and I was not married at the time. Six years later, Luke, our first child, developed leukemia and Randy Y. was his only and closest match; someone who is unrelated to us... The world is even smaller when you read more... When Luke became ill in September 2001, we were made aware of another Amerasian child with leukemia who was looking for a bone marrow donor. Her web site is http://www.helpnicole.org . Similar to Luke's mom, aunt and uncle, Nicole is Japanese-American. We were in contact with Nicole's family via e-mail since Luke also had leukemia and was at that time looking for a donor. To make a long story short, Nicole's father is also a police officer for the city of Seattle and one of Randy's co-worker. For those of you who have not registered with the NMDP (www.nmdp.org), please do so as Nicole Howard is still waiting for a donor... We ask you, Is the world small or what?? Partly because of Nicole and the Howard's family plight to recruit more Asian-American and ethnic minorities to join the NMDP, and partly because of Luke and Sergeant Randy Yamanaka, Governor Locke of the state of Washington, passed an "Executive Order 02-01" ( http://www.governor.wa.gov/eo/eo_02-01.htm ) allowing all state employees to take paid leave to participate in "life-giving procedure" such as bone marrow donation. Can you imagine being penalize for going to donate bone marrow to save Luke's, or any other human being, life?? Thank you Governor Locke...

Luke is now off ALL medications except Keflex antibiotics twice a day to help prevent infection. (YEAH!!!!) This is because he had a spleenectomy. He is still chewing those gummy bears vitamin and get calcium supplement either from chewing on Viactiv or getting liquid calcium. Luke does not drink anything except apple juice. He is eating most things; though, he is very particular of what he likes. Basically, anything green is a "no no;" although, he sometimes surprise us and would eat a few peas. We are visiting the clinic about once a month now. We just had a visit from a behavioral specialist to help us work on some of Luke's behavioral issues (getting off the bottle at night, temper-tantrum, toilet training, etc.) Today was actually day number two of toilet training. Luke used his potty for making "bubble." When Luke immitate his "baba" urinating, he makes bubble in the bowl. Luke does not go pee-pee, he makes "bubble". Is this funny or what? We know that you are smiling right now :-) Let's see, what else... We have a derm and onc appointment toward the end of June. We then will take the kids to Disney World the first week of July. Yes, we are concern with the sun exposure and heat... Luke is schedule for a repeat MRI on July 8. Luke continue with home schooling 4 days a week. We actually took him to the school today after school was over to see how he would react to the classroom. He did fairly well. He explored the classroom, played with the computer, some toys, and some books. Only about two or three tantrums. Thank YOU Christina (Luke's teacher.) We hope to enroll Luke into the special pre-school program at the school once his immunological status is normal; hopefully the second or third week of July... Hope continues to do well. She is very spoiled by grandma and wants to be held constantly. She has quite a temper and is constantly moving...

Anyhow, I think that's it for now... Till next time. Thank you for checking in on Luke... "Bye-Bye."

Saturday, April 5, 2003 3:40 PM CST

Day +383:

WOW, It's been a year since Luke had his bone marrow transplant... Luke's "Re-Birthdate" was on 03-18 and his 3rd birthdate was 03-22. Last year, Luke's 2nd birthday, we were confined to our hospital room at Day +4. It has been a very long and difficult year for Luke and our families... This year, we had a big birthday party for Luke. It's a celebration of not only his birthday, but how far he has come this last year. It's a celebration of life, of family, and of all who have given so much to our family... Thank You everyone for helping us made it this far, for helping our family through a very long and difficult year. THANK YOU DONOR, whoever you are. We wish you were here to see the smile on Luke's face
and on everyone's around him. By donating your bone marrow, you have given Luke a new life. Thank you
everyone for helping us put the party together, for all the presents, and especially for coming to celebrate
with our families... Luke awoke from his afternoon nap to a house full of stranger. He certainly cried, and cried. Eventually, toward the end of the party, Luke was outside running around after other kids and having a blast... It was truly a GREAT day...

Since our last update, Luke has tappered off his steroid (YEAH). He is down to 14 kg. At his heaviest, Luke was almost 18 kg. We are currently tappering his Cell-cept. If all goes well, we should be off this medication in about 6 weeks together with his Bactrim as well. Luke is now off fluconazole. He continues on his multivitamin with folate (now in the chewable gummy bear type), and calcium supplements. He continues on his Keflex twice a day since he no longer has his spleen. The Keflex will continues for many years into the future... The result of his one year bone marrow biopsy show 99.5% donor cells (YEAH- THANK YOU DONOR!!)... For the near future, Luke will start a home schooling program. It will be one hour a day, four days a week. This will be transition to a special pre-school program of three hours a day, four days a week... One year ago, pre-school would be something that I would have never even thought possible; but, here we are today... "You have come a long way Baby"... Luke will have to redo ALL of his vaccination in the future (OUCH). This is because with the transplant, all of his "memory cells" were wipped out...

I forgot to give a BIG BIG thanks to all the physicians, nursing staffs, and all the support staffs at Lucille
Packard Children's Hospital for their dedication and excellent care of Luke this past year...

Our JMML families continue go grow each day. Many of our childrens are in transplants, preparing for transplant and some are fighting relapses. Dear Gracious Lord, may you make our difficult journey short, without much suffering, and lead us to safe harbor.

Till next time, thank you for checking in on Luke and our family.

Wednesday, February 19, 2003 1:36 AM CST

Day +335:

Hi Everyone. Thanks for checking in on us. We know that this update is way past due. Since our last update, Luke continues on his steroid taper. Starting tonight, Luke is down to 0.9mg twice a day. If all goes as planned, Luke will be off steroids in about 3 weeks. Luke's previous blood pressure medication was discontinued ("Yeah"). Next in line will be tapering of his immunosuppressant drug CellCept... We continue to work with speech therapy weekly. Although he still does not say much that is coherent, he is mumbling and gesturing more. He is definately trying to verbally communicate more. We think that he understands more as well. He would often laugh out loud while watching Tom-and-Jerry...

We had quite a scare the previous week when Luke's blood count show a 20% monocytes. JMML is Juvenile Myelomonocytic Leukemia. We spent the whole week worrying about Luke having a relapse. Thank God that the repeat blood test the next week show a normal 10% monocytes. The elevated monocytes the previous week was attributed to the sniffles that Luke had and a bone marrow "recovering" from transplant... It's terrible to live this way, not knowing what the future holds for our precious son. We live basically day to day, not planning too far in advance. Every little things, such as him scratching his scalp, sometimes worry us about relapse... The survival data at one and two years post transplant looks good. I wished that we were five years out; since, this would technically be a cure... Well, enough of negative thoughts... Let's see, what else... Grandma Do is here visiting for a while. She is to get cataract surgery soon. Can you believe that Christina Hope Do did not recognize her grandmother? The person who raised her for the first 14 months of her 16 months life... Maybe it's best, since grandmom is not suppose to lift anything at all after the cataract surgery...

In closing, please pray for all of our JMML families; especially Colby who is now day +20 from a second transplant and Connor who is recovering from an PICU admission. Connor needs to increase his strength in preparation for his second transplant. Please keep Colby, Connor, Luke, and all of our other JMML childrens and families in your thoughts and prayer... "Bye-Bye" from Luke...

Sunday, January 12, 2003 at 12:18 PM (CST)

Day +298:

Wow, it’s been more than a month since we last posted an update. Time really flies. I actually did an update soon after the new year; but, it got “zapped” somehow and never appeared on Luke’s web site. Let’s see, since the last update, we had both Christmas and New Year. Aunt Pearl came to San Jose for a last minute surprise Christmas visit. We had Christmas dinner at our house. Every members of Sarah’s family was present; including Rosa (sister-in -law). Luke and Hope received many presents. Of course, Luke’s Christmas came early this year. Luke and our family was given the most precious present on March 18 when Luke received his bone marrow transplant. This is by far the most wonderful and priceless present that anyone can give another individual. It saved Luke’s life. We encourage anyone (especially ethnic minorities) who has not register with the national marrow donor program to do so as there are many children and adult out there who are still waiting for a bone marrow donor. Please see the link below for more information.

Luke continues to have bi-weekly visit to his doctors at LPCH. His steroid dose is now decreased to 2.4mg twice a day. His other meds remain the same. He is much less cushingnoid in appearance (much less swollen) since his steroid dose is now at a much lower level. We continues to work with speech therapy weekly. He is gesturing more and his vocabulary has increased to about 14 single words. It’s like “pulling teeth” trying to get him to say anything. The other day, out of the blue, he said “door.” We were very surprised as we have not taught him this word. Now, we try to keep all the doors close to get him to say “door.” Luke and Hope is playing with each other more each day. They love to hop up and down on the same bed and hide under the blanket. I think they now know that they are siblings…

Sarah and I continue to take turn working and spending the rest of the time with Luke and Hope. As they say, work is work… It’s always there…

Our JMML support group continues to grow… Thanks Dana for the nudge to post this update. We welcome everyone with open arms and big hugs…

Please continues to pray for Luke and all of our JMML families; especially, Connor who is currently on a ventilator and Colby who is preparing for his second transplant. Please pray for Joanne Pang and her family and all other children who is afflicted with life threatening diseases.

Lastly, check out the new pictures…. Till next time… A big “bye-bye” from Luke :-)

Wednesday, December 04, 2002 at 11:01 PM (CST)

Day +260:

Hi Everyone: Sorry it's been a while since we last posted an update. I actually type this last night; but, on the one night that I wanted to do an update, my ISP was down… Let's see, Christina came home on 11-20. She just absolutely Love Luke. She chase him all around the house, wanting to play. Luke, on the other hand, is not so sure about his sister... He often push her away when she is too close. Christina has hit Luke a few times and Luke has also done the same, sibling rivalry starting... It's just wonderful to have the two of them together with us as a family again. Thanksgiving came next. We have lots to be thankful for this year. Last Thanksgiving, we did not know if Luke would be here for this Thanksgiving... Christina was only about two months old. We are so thankful that Luke and Christina is with us today and growing. We are so very thankful for all of our families and friends who have help us is so many ways... Without them, I don't think that we could have made it to this day. As someone stated, we have been "to hell and back." The journey from diagnosis to transplant to now has been so very long... Thanksgiving was quite; just our small families (we still have left-over turkey...). Grandma Do is leaving tomorrow. It will be a struggle after she leave... Christina is so attached to grandma that if grandma is anywhere within sight, she has to be next to or held by grandma. This is obviously natural since grandma and grandpa raise her for the first 14 months of her life... I'm not sure how much of that 14 months she was actually not held... Words cannot express how much my parents and all of our other families members and friends has help our family... Let's see what else... Luke has a visit or two to his doctors. Steroids and all other medications remain the same. Physically, he is running around and being a toddler. We think that he said "more mum" today (more food). This would be the first two words phrase that he has ever spoken. Luke is enrolled in the county Early Start program. Next Monday will be their second visit to the house to help him with speech development... Well, that's it for now. Till next time, thank you for checking in on us and thank you for all your help and prayers. Have a wonderful holidays…

Wednesday, December 04, 2002 at 11:01 PM (CST)

Sunday, November 10, 2002 at 12:46 AM (CST)

Day +236:

It's been two weeks since we last update. Let's see if I can re-cap all the significant events. Uncle Thuy came for a short visit. It was very nice to see my brother again. I haven't seen him since my wedding. He was so good with Luke. It's nice to see Luke play with his uncle. Hopefully next time, Luke can visit and play with his cousins. Luke had a clinic visit then a dermatology visit. We thought that the dermatology visit would not be painful; sorry, a punch biopsy was performed to address the issue of Luke's skin rash. I forgot to mentioned that at the heme/onc clinic visit that because of Luke's newly developed mouth sores that we had stopped his Accutane. The biopsy show "grade II" skin GVHD. The problem is that it is hard to distinguish skin GVHD from Accutane toxicity. Since stopping the Accutane, Luke's skin has improves significantly. We think that the skin problem is both a combination of skin GVHD and accutane toxicity. Luke continue on the same dose of steroid of 3.5mg twice a day. We had another clinic visit last Thursday. Initially, our physician wanted to double Luke's steroid because of the skin biopsy result; however, because Luke's skin is improving with the stopping of accutane, we decided to leave his steroid dose the same. We hate to have to go back up on his steroid not only because of the medical side effects, but his behavior get dramatically worsen as well.

Next week, Christina will be re-united with her parents and brother... HORRAY!! We have lots of catching up to do...

Please continue to pray for all of our JMML families. Colby (preparing for 2nd transplant), Connor from NY- battling relapse, Connor from Canada- recently diagnosed with JMML, Riley from Australia- recently diagnosed and undergoing Chemo, Libbie from Tx- struggling post transplant. Please don't forget Luke and his families as well. May the Lord cure Luke of his leukemia...

Goodnight. One of these day, I will update the photo (sorry)...

Sunday, October 27, 2002 at 12:37 AM (CST)

HAPPY

Day +222:

Luke had a clinic visit last Tuesday. Because his skin rash has improved, Luke's steroid dose was decrease from 4 to 3.5mg twice a day. His blood count was normal. After poking Luke's finger twice and an unsuccessful attempt at a peripheral draw, only enough blood was obtained for a CBC. Luke does not bleed as much since he is off the blood thinner (thank God). We had an audiology visit on Thursday. It appears that Luke's hearing is OK. We wanted to see if this was the cause of his speech delay. Although he does not say much, he always gets his way, just by grunting. Luke is attempting to make more sounds and can say bye-bye very well (hand gesture and all). It's amazing how fast kid changes. Only three months ago, after discharge from the hospital, Luke couldn't even stand. I can't believe that he is now running every where that he goes. I think that not long from now, we won't be able to get him to stop talking... Even the picture on the web site no longer look like the current Luke; mostly, because his hair is growing back and he is not as swollen as he was while on high dose steroids...

Thank you auntie Pearl and uncle Randy for the pumpkins and your visit. Uncle Thuy will be visiting this week. Please pray for Colby and Connor, Luke's JMML buddies who is battling a relapse of the leukemia as well as several families who are newly diagnosed with this horrific disease. Please pray for John, our neighbor, who just suffered a minor heart attack and underwent a quadruple coronary bypass this past week.

Thank you for checking in on Luke and our family. Till next time, goodnight.

Thurday, October 17, 2002 at 12:45 AM (CDT)

Day +212:

Sarah's Journal:

Sorry about the lack of updates recently. We had some very good news last week. Luke had his MRI of the blood vessels draining his brain and skull, which showed that all the vessels that were formerly clotted are now open totally. Lam and I had to read the report several times to believe it. We expected some improvement but not totally. We were able to stop those lovely twice a day injections of the blood thinner. Thank god for more miracles! All of Luke's blood counts are normal. There is no more sign of the TTP, clotting disorder that he had before.

He is doing well and is at the tail end of a virus. His skin has continued to be a problem. It is still unclear if he has skin GVHD or side effects from accutane or both. His steroid dose remains at 4mg twice a day due to the continued skin reaction, though it is improving to some extent. He is quite hyper on the steroids and his appetite is back up as well as his tantrum frequency. It is difficult to keep him constantly out of the sun which means basically in the house. Thank goodness that it will get dark sooner. Maybe Luke should be a vampire for Halloween. One of his buddies next door said the other day "Can Luke come out? It's dark outside, now." We have converted the living room into a second play area with Thomas posters, Thomas train tracks, Winnie the Pooh stickers, Thomas stickers. We bought Luke a Thomas Halloween costume but he refuses to keep it on. I think Dad or Mom will have to dress in the Thomas outfit and Luke will be the same bumblebee he was last year. Thanks Mimi for last year's great costume with it's padded belly which was meant to disguise Luke's protuberant abdomen last year.

Luke no longer wants to watch Thomas videos but instead prefers Barney and Bear in the big blue house and the muppets. He still loves his thomas trains, though. I found out that the trains are life time guaranteed. I called to return 2 of the wooden trains which were damaged from Luke's throwing them on the ground (remember Elaine). I was told that usually the policy is to return the trains then a replacement would be mailed back, but since it is a busy season, I didn't need to mail them but would receive the replacements in the mail. A mistake was made and 3 replacement thomas trains were sent. So, we have the quintuplet thomases as well as some of the ironcast trains. At the hospital Lam and one of the anesthesiologists were quoting lines from the Thomas videos. I guess I'll have to pay more attention to the videos so I'm not an "out of it" mom.

We still await Luke's audiology to see if he has a hearing deficit as well as his speech therapy. We still await to hear about our health insurance. By law, an insurance carrier has to accept us but the premiums may be high. Please pray for us regarding this very anxiety provoking issue. Please also continue to pray for healing of Luke's skin condition that he may be able to go out again. Please also pray for Colby and Connor who have relapsed with JMML.

Thanks to Rebecca Gonzalez, our staff, who also participated in the Leukemia and Lymphoma Society Lite the Nite and for the donation from Mr. Glenn Mayor, Pfizer representative. Thanks to the Triathlon team in training for Luke's great hat which you all signed.

Lam's Journal:

In addition Sarah's journal above, I would like to add the following. I would like to thank Cherry and Gupta. Dr. Gupta Etwaru, who I have known since 1988 from med school, is a board certified opthalmologist who performed Lasik on my eyes on 10-04-02. After about 20 years of wearing glasses, I can now see without any assistance. It's totally AMAZING. For those of you who may be interested, I would definately talk to Dr. Etwaru. His web site is www.insightvisioncorrection.com. Furthermore, thanks Gupta for setting up and paying the legal fee to establish The Luke Do Leukemia Fund, a non-profit public corporation. I am in the process of trying to obtain the federal and state tax exempt status. We have not fully define our mission statement; but definately, some aspect of our mission will be to increase the number of Asian in the bone marrow donor registry and to increase the awareness of umbilical cord blood.

We had a clinic visit today. No changes on Luke's current medication. I was hoping that we could go down a little on his steroid; but, not this week. Aunty Pearl and uncle Randy is coming tomorrow for a short visit. Luke will be excited to see them.

Goodnight...

Tuesday, October 01, 2002 at 12:48 AM (CDT)

Day +196: Boy, I'm starting to lose track of the days. Well, we had a step backwards today. We just keep trying to remember 2 steps forward and l step backwards. Actually, it feels more like a million steps forward and l0 steps backward since Luke got home. Anyway, Luke's skin really flared up in the past few days. His face looks like a bad sunburn. His extremities are blotchy with red raised areas. His trunk is the least affected. His face and scalp are also peeling. We called yesterday and were told to bring him in today. His steroid dose was increased from 2mg twice a day to 4mg twice a day to try to get the skin GVHD under control. If this doesn't work and he worsens, Dr. Agarwal said he may have to go on cyclosporine. He has had symptoms of a viral upper respiratory infection with cough and runny nose but no fever in the past few days. It's possible that a virus is triggering his worsening skin GVHD. Our hope is that as the virus improves, his skin will too. Just with the increased steroid today, he looks a bit better. We hate to see our poor boy itching and scratching and are using hydrocortisone and benadryl as needed. Again, it's hard to keep him indoors especially when he knows his buddies next door are playing outside. We know, though, that we can't risk possibly worsening his skin with sun exposure or other infections right now. We worry that possible sun exposure when we took him to see Thomas may have triggered this exacerbation. We have tried to learn, though, not to play the "guilty parent" game with ourselves which can destroy a person, but to learn from our mistakes. We are trying to keep in mind also that "the little things" as Lam said before are not so important in the big scheme of things and to trust in God to help get through this new hurdle. There are days like today when Lam felt particularly down especially after our clinic visit and calling all afternoon regarding trying to get new health insurance for Luke and ourselves and contesting bills we are getting for thousands of dollars. On other days, I'll feel down and Lam will try to boost me up and vice versa. I think we're going to need to again be more conscientious about planning breaks for ourselves together and apart with friends and family. Today, I told Lam to try to look at the funny side of the insurance situation. Here we are, two doctors, and we can't even get health insurance! We have one month before our contract with Lifeguard expires and we're out of insurance. Please pray for us that we can find insurance for Luke this month. We pray that God will give us the strength to keep fighting these mini battles. Luke, other than the above, is still doing great. We are still trying to let it sink in that his VNTR was 99% donor. It is still sometimes hard to celebrate for fear that something else bad will happen. Now, I feel extra sensitive to smaller things that compared to the worst times, don't seem that big. We find ourselves getting anxious over a cough or sneeze.

We had Luke's speech therapy evaluation yesterday. It was kind of a downer also. The speech therapist would ask "Can Luke do ----". After the umpteenth no answer, Lam and I just had to say "No he can't, but he's alive!" That put it in perspective. "And he's walking, and he's eating, and he's laughing, and he is saying some words, and he's in remission." Luke will be enrolled in Early Start, a county program where until the age of 3, a speech therapist will come to the house and work with him. We were very happy with this news. He will have an audiology evaluation first.

Luke continues to play with Thomas and his other trains daily. He often walks around the house with his arms full of trains or has two trains side by side in his hand which he holds up to his face so he can look at the train faces. He continues to take Thomas everywhere we go, to bed, to the clinic, and was even trying to take Thomas in the bath with him. We let him do this once or twice after tantrums but are now diverting his attention to other bath toys and bubbles in the bath which he loves. Lam and I usually wind up soaked or near to it when Luke takes a bath since he loves to splash. He also loves to lie flat in the water and kick his legs as though he were swimming. We hope to be able to take him to a pool someday.

Thank goodness his hair is growing out only because it means that his daddy will shave his beard soon. Lam promised that he would shave as soon as Luke's hair grew out. Sometimes I feel that I'm married to a monk or Rip Van Winkle. Lam has also been called "Uncle Ho" for Ho Chi Minh by his friend Vinh. When the two neighbor kids were over, aged 6 and 4, Lam asked them if they liked his beard. Kids are honest. The little girl Sarah quickly said "No." Then Lam turned to Jacob, who also said "No." The babysitter when she returned from a visit to Vietnam said a strange man who looked Indian came up to her and started talking to her in Vietnamese and she said to herself "Who is this Indian man talking to me in Vietnamese?" Truthfully, I admire his intent.

I want to thank Ms. Huong Le, Luke's former babysitter, who has been coming here almost everyday to help with housework and cooking and refuses to let us pay her. She loves Luke very much and because of her help, I believe he has improved much more quickly than he would have. She has prepared delicious, healthy food for Luke and ourselves and has by helping out given Lam and myself more time to devote to helping Luke and spending time with him. Thank you to Nicole Trieu(the babysitter's daughter) and her whole family for all their love and generosity. You have hearts of gold.

Sunday, September 29, 2002 at 9:50pm PT

Day +194: I know Lam just updated yesterday but I just wanted to give a big thank you to my church, Heritage Baptist Church, for all their support in many ways this year. They surprised Luke with a Thomas the train track set with a beautiful wooden table and trains. Luke has been playing nonstop with the set today. Since he has the probable skin GVHD, we are being extra careful and right now not taking him outside at all, so the train set will be very well used! It has meant so much to our family to have so many prayers from the church and I'm sure God was listening because Luke pulled out of so many near death situations. I remember thinking to myself that his case was so amazing that if he wasn't my son, I would think of writing him up for medical journals! God has blessed Lam and I with his comfort and strength this year as well. We know that he will also provide his strength to those other JMML families going through these tough times. We will continue to pray for their healing daily. "God is our refuge and strength, a very present help in trouble." A special thanks to Sue Douglas and her family and Pastor Cheetham and his wife Christina Cheetham for their unending support throughout this year.

Saturday, September 28, 2002 at 09:32 AM (CDT)

Happy Birthday Christina Hope Do!!!

Day +193:

Many news to report, both good and bad...

The good news... The result of Luke's bone marrow biopsy show 99% donor cells (YEAH!!). Luke had a visit to physical therapy on Monday. It will be our only visit since he is doing so well physically. He still needs some quad strengthening exercise to do; otherwise, he is improving on his own. Actually, he is running around the house now. We watch him carefully as he is still fully anticoagulated (on blood thinner). He is eating all food except dairy products and sweets. Luke's appetite is now very diminished. He is actually very choosy about what he wants to eat; not like when he first started eating... I guess he is finickly (sp) like any 2.5 yrs old kid... It's Christina, Luke's sister, birthday party in Oklahoma City today with Luke's grandparents and aunty and cousins. We will see them via the web-cam... Happy Birthday Christina!!!! You will be back with us soon. We miss you very much... You are our most PRECIOUS and only daughter as Luke is our most PRECIOUS and only son...

The bad news... We had a visit to the clinic on Tuesday. It was an unscheduled visits because Luke had developed an ear infection. He was started on antibiotic (Azithromycin). Luke's rash continues. Our physicians believe that the rash is a form of chronic skin GVHD. The rash is most severe on the face; very scaly and peeling like a continuous sun burn with redness, dryness and peeling of dead skins. Itchy as well... It's official, our health insurer (Lifeguard) will be out of business at the end of the year. I think the four or five families that needed bone marrow transplant on Lifeguard did them in... Either that or it's because Sarah was praying so hard for them to go out of business because of the way they had treated us by making Luke's and our life difficult... Anyhow, we are loosing our health insurance. It's a big deal when your son has leukemia... I don't know what insurer will pick us up... In the grand scheme of things, loosing health insurance is not a biggie for us... Luke is doing well. Everything else pale in comparison when you compare it to life and death situation. It's another "bump in the road" that we will go over...

I saw a patient in the office yesterday. His son David R. has been in the hospital for over a year now. Can you even imagine that? I cannot, as three months for me was more than an eternity... Please pray for David and all of our JMML families. Both Colby and Connor has relapsed of JMML. Colby was transplanted 3 days before Luke and Connor was transplanted about a month after. Their families are going through very very difficutl times and needs your prayers.... Till next time, have a good week everybody and thanks for checking in...

Sunday, September 22, 2002 at 9:38pm PT

Day +187: First, I'd like to say thank you to all of you who participated and donated to the Leukemia and Lymphoma Society "Light the Night" walk in San Jose on Friday, Sept. 20. It was truly an inspiring nite. Thank you to Lam's cousins Kimmie, Phuong, and Dung, Kimmie's boyfriend Steve, their friends who came on the walk (sorry I didn't get all your names except Vinh-a survivor himself), Dr. Khanh Tran, Terry Pham, and my mother. Thanks to the donors (sorry I don't know them all) Steve's coworkers, O'Connor MRI, Laura Karrer(spelling) from Novartis, Caroline Gaskins, VMC department of medicine. There were a number of survivors there and lots of supporters. Also food and music. I met one small boy walking with his grandparents who has been looking for a donor for a rare cancer for 4 years. The drives his family has participated in have found 25 donors for others but not yet for himself. He is hispanic. There is still a GREAT need for donors of minority backgrounds and mixed race. Please sign up as a donor with the red cross if you haven't already. Anyway, back to the walk. Walkers were exhilarated. Luke was in the stroller most of the way but then wanted to be carried. Thank goodness there were many to take turns carrying this 40lb boy. He had a good time and was laughing and playing. We hope to do this again and again on a bigger scale each year. If you'd still like to walk, check out the "Light the Night" website for locations nationwide.

Today marks the l year anniversary of Luke's diagnosis with leukemia. I remember that day so well as does Lam. We had had Luke's labs drawn the afternoon before and not yet received results. He had been very pale and fatigued with a mild case of chicken pox that week and Lam had palpated an enlarged spleen. We kept thinking he might just be anemic from too much milk intake and that he might have stool in the gut from being constipated. I didn't sleep well that night and very early the next am decided to call the lab myself stating that I was Dr. Gaskins and needed the patient Luke Do's labs (I know I wasn't supposed to do this). As they read off the results-- Platelets 40,000, Hemoglobin I believe was 8, and white count a whopping l40,000--I thought I was hearing wrong and asked her to repeat the results. I was trying so hard to keep my voice calm. I said thank you and got off the phone. I began to almost hyperventilate as I walked into the living room where Lam and Luke were sitting. I could barely get the words out between breaths that Luke's results were bad, really bad. Then I told Lam the results. We called Luke's PCP who was already arranging for admission to Packard before calling us. I was afraid I might have the baby that day that was due to be born on Oct. lst. but thank goodness that didn't happen. Lam and I can't believe all that's happened this year. We thank God for bringing us to where we are now because without him we wouldn't have made it. We will continue to trust in him and thank him for every moment we have with Luke. And as another JMML parent said, we hope that God will give us many, many more minutes, days, months and years full of memories with our son.

Thursday, September 19, 2002 at 7:49pm PT

Day +184: We heard today that our insurance company is at risk for going under. Maybe me and my church have been praying too hard! Just kidding! This is concerning because we don't know yet if we will be liable for all outstanding bills(which is a lot) if they go under. Also, who will pick up Luke with his history? Anyway, we'll be working on answers to these questions. It will also affect our business.

The Light the Night walk will be tomorrow nite here in San Jose. My mom, Luke, me, and Lam will be going with Luke in a stroller. We didn't raise much money this year but hopefully will next year for the Leukemia and Lymphoma Society. It will be inspiring to see the supporters, survivors, and current patients in treatment. We will be lighting the nite for all of you JMML team members out there and their families and other leukemic patients and in memory of others. I believe there will be other walks across the country. Check the website www.lightthenight.com. Check out the section called mosaic also. It features short stories about leukemia patients. Surprisingly, I didn't see any JMML patients and under the category rare leukemias, we still didn't find JMML. We will be adding Luke and hope you'll add on too.

Luke is doing fine. We hope his speech therapy starts soon.He has an outer ear infection but we can treat this at home with medication.

Please add Connor and Colby to your prayer lists and worldwide prayer lists. Please pray extra hard for Colby at this time for God's healing.

Tuesday, September 17, 2002 at 9:23pm PT

Day +182: Well, today was our special day out with Thomas the Tank Engine. I don't know who was more excited, Lam or myself. Luke didn't know about the trip. Of course, he was very excited and happy when we got there! Lam and I didn't get much sleep last nite--I'm not sure why. Luke woke up at 6am instead of his usual 7:30am. There must have been hundreds of little boys and girls with Thomas the tank engine shirts running around yelling "Thomas, Thomas". Luke was staring around in shock. He probably thought he was the only Thomas fan! Mom was a little bit disappointed by the train. Thomas was about l/2 the size of a regular train car. I thought that James, Percy, Gordon, Henry, etc. would also be there and that we would get to ride on each train. Instead, open train cars were attached to the Thomas train for the passengers. It was a beautiful ride into the redwood forest and back. After the ride, we went to a large building where only Thomas items were being sold-Thomas bedding, t-shirts, toothbrushes, puzzles, trains, tracks, etc. Luke immediately went to a large box which had the roundhouse, where the trains sleep. The box was about his size. He grabbed the handle and tried to drag it out. We finally convinced him to go on to other things. We had been in another Thomas store in the past and seen little boys having tantrums when they couldn't get what they wanted. Well, today it was Luke's turn. I think he wanted to take the whole store. He finally selected a train called "Dodge" who I haven't seen in any of the films. Mom's beginning to think there's a cult thing going on here with Thomas! We also got posters, a book, and a t shirt. He was quite happy. Thanks to all you folks out there for all the thomas gifts and other toys Luke has received. He has played with each and every one and they have kept him happily occupied during the months he has been in the hospital and at home.

We spent all day yesterday at the hospital. Luke had anesthesia for the bone marrow biopsy and insertion of the IV. He had labs drawn while under including to check his immune status. The initial smear of the bone marrow biopsy looks good we were told today. Hurray! The VNTR's will be back in 2-3 weeks. His steroid dose was kept at 3mg twice a day due to his skin rash not having resolved. It may be lowered next week. His appetite and progression of more and more foods to his diet are doing well. We've added watermelon, asparagus, waffles, goldfish(his old favorite), bananas recently. He has tolerated them all. He still receives some elemental formula, Vivonex, but is being changed over to Alimentum. Our insurance refused to pay for the Vivonex ($l,000 a month for us) even though it was medically necessary. Luckily, Luke has done so well that he will likely get weaned off formula soon. We are fortunate to have some samples of Alimentum. In a few weeks, hopefully, we will see if Luke's veins have opened up. Our doctors feel Luke's TTP has resolved and that he can get off Lovenox soon.

Sometimes, we feel like the soldiers who have come back from a great war. Life is getting more and more back to normal although it will never be the same again. We are all changed in our attitudes about life, love, family, friends, priorities. We thank God for the many miracles that have taken place and enabled our son to be with us today, laughing, giggling, bubbling over with glee on a regular basis. Thank you all for your prayers and support in so many ways.

Sunday, September 15, 2002 at 02:04 AM (CDT)

Day 180:

Wow, it's been six months since Luke had his transplant... How time fly??

Another week has passed. On Monday, we went to clinic as usual. Luke's counts are normal. His weight was up to 17.4 kg (38.3 lbs). The skin rash had improved. The steroid was decreased to 3mg twice a day. Luke's diet continue to broaden as well, one new food every two to three days. On Friday, we were evaluated by a physician at Valley Medical Center at the request of Lifeguard to see if Luke needed physical and speech therapy... Do you think that a 2 1/2 year old baby who underwent a bone marrow transplant and was bed bound and isolated in his room for 3 months will need physical therapy when he is sent home?? Lifeguard didn't think so... What a STUPID health plan... Their motto is "the health plan that is on your side, not in your way." I think that they should change that motto to "the health plan that is in your way and not on your side." My wife have resigned as a provider for this health plan as a symbol of protest for their unethical practices... Remember, they would not cover the HLA typing to see if Luke's sister was a match for him; nor, did they help us with finding an unrelated donor....

Since we have been home two months, we have slowly watch Luke strength improves. We have decrease his steroid dose and do home PT. Luke is walking very well now, almost running... He still cannot climb steps yet; but, soon... The physician we saw on Friday felt that Luke needed both physical and speech therapy. Luke's speech regressed while he was hospitalized. He is trying again... The other day, he said "bubble." I'm looking forward to him talking more and asking all the "why" questions...

Tomorrow is a big day. Luke will get a bone marrow biopsy and blood draw to determine percent donor cells. He will also get his IVIG infusion. Tuesday, we are taking Luke to Felton (near Santa Cruz) to see the REAL Thomase The Tank Engine...

Thank you for checking in on Luke and for your continual prayer for Luke and our family. Please continue to pray for the rest of our JMML family...

Sunday, September 08, 2002 at 12:45 AM (CDT)

Day +173:

Last Monday was clinic day and tomorrow will be another clinic day. We go to clinic now once a week (yeah) instead of twice a week like before. On last Monday, Luke's rash was still present; hence, we left the steroid dose the same (4mg twice a day). The rash might be from GVHD and or some component from a possible allergic reaction to penicillin. Luke was never allergic to penicillin in the past; however, with the new bone marrow, it's quite possible that the donor was allergic to this medicine and now Luke might be as well. This might be a problem since he is suppose to be on penicillin for a long period (maybe age 18 or maybe forever) since without his spleen, he is more at risk for infection. The rash has now disappear; but, he still on occasion scratch. It's worse at night. We are worry that his scratching might be a sign of recurrence... We hope not... It's strange that he scratch the most right after urination; especially around the diaper/belt line, but all-over as well. It's slightly less with us stopping the Aveno... Anyhow, not sure why he scratches at time...

Luke's diet has broaden. He has eaten rice, rice noodle, pasta, fish, chicken, pork, carrots, squash. He especially loves the spagetti with tomatoes sauce. Luke is eating like a horse, at least 5 or 6 times a day. I guess he is making up for all the lost meals. On Monday, he was 17kg (37.4 lbs). I think that he will be heavier tomorrow. Luke continue to make small daily improvement in walking. There is more muscle mass in his legs; though, he still cannot climb steps. In term of his behavior, in general, he is a happy boy. At times, he is having "temper-tantrum". He is 2 1/2 years old. The "terrible two's" stage... He will let you know if he does not get what he wants. His speech is essentially the same. He does not have to say much, just grunt, and he gets his way...

Last Monday, all of Luke's counts were normal. Platelets was 192K.

Thanks for checking in. Check out the new pictures. Sorry it took so long...

Please continue to pray for Luke, Colby, Connor and all childrens afflicted with childhood diseases.

Friday, August 30, 2002 at 12:28 AM (CDT)

Day +164:

Another week has passed since our last update. Time really fly by us when we are busy taking care of Luke and working as well... Luke had a clinic visit on Monday. He continues to improves each day. He is walking very well now; though, his balance is still not perfect as he has a large "beer belly." He is actually very Cushingnoid (sp) with truncal obesity. He has the typical moon facies, buffalo hump and truncal obesity... His leg is still weak in that he still cannot handle steps yet. He can barely get up from the gound on his own. He is now eating lots of white rice with small amount of lean chicken. He continues on his special formula; though, he prefers food... His medications remain the same. We did not lower his steroid this week because it appears that his skin is having some GVHD. It's a rash all over the body, most noticeable in the legs. At times, his skin feel very hot. At other times, the redness is less and the skin temperature is normal. The skin GVHD cause some itching. We hope that this skin GVHD will clear up soon so that we can continue to lower his steroid... Forgot to mention that Luke is learning how to talk again... Also, a BIG congradulation to Jack and Rosa....

Thanks for checking in. Hopefully I can upload some new pictures this weekend... Goodnight.

Friday, August 23, 2002 at 11:33 AM (CDT)

Day +157: Our recent time at home has seemed idyllic compared to previous months. We wish we could freeze this period since Luke seems so much happier. Since the steroid taper below l0mg twice a day, he has become more and more the Luke we knew--his mannerisms and personality are returning. It's wonderful to see this was not lost. He remembers more each day. He remembered the small garden patch we have beside the house where he used to pick berries with daddy each morning for breakfast. He went out there recently and tentatively reached over and picked some strawberries which he wasn't interested in eating (he wasn't allowed to) but just holding. He held the berries in his hand to his chest and squeezed them until the juice ran between his fingers.

His steroids were lowered to 4mg twice daily today. He was started on some soft rice as an addition to his regular formula 5 days ago. He can now take l/4 cup of rice twice a day and begs for more. He has tolerated this well without problems. He continues on his multitude of medications every day: oraped, dynacirc, omeprazole, fluconazole, lovenox, accutane, cellcept, and bactrim and leucovorin on Monday and tuesday. This means on wed-sun he takes l0 doses of medication and on mon and tues he takes l3 doses. 2 of these a day are injections of the lovenox(blood thinner). Whereas he used to almost like to take the meds when he was hungry, now we have to pin him down and force him to take them. At +180 Luke will have immunologic studies done. If ok, some of the drugs will be stopped and some restrictions lifted.

Luke's recent blood test VNTR (to check for % of donor vs. leukemic(host) cells) showed 99% donor cells. Hurray! Though the news is great, we can't help but hold our breath until the next test result.

For all you good souls out there who would like to help fundraise for the Leukemia and Lymphoma society to help in further research to find cures especially in cancers such as JMML where so little is known, there is a "Light the Nite" walk in San Jose on Sept. 20. You can sign up sponsors for a 2-3 mile walk. There will also be walks in Santa Cruz and Palo Alto. We'll give you more info on this soon. Please call your local Leukemia and Lymphoma Society for more info and to register.

Please keep Colby in your prayers. Colby is now on my church's prayer list. Also keep Joanne Pang (www.joannepang.org) who is 8 from San Francisco with leukemia at Duke University and having complications post transplant in your prayers. Prayers for comfort for the families of Edward Bordell, Jr., l5, who recently passed away from leukemia at Packard Children's and for the family of Luke Ydens, 4, who passed away last year August 11, and whose family has been a blessing to us. A hello to Nick Nelson and family who was in BMT when we were and is now home in Selma. We're happy for Cindy in Colorado who is doing well in Colorado.

Friday, August 23, 2002 at 12:16 AM (CDT)

Saturday, August 17, 2002 at 12:08 AM (CDT)

Day +151:

Since Tuesday, Luke continues to make slow improvement in walking again. He can now walks without any assistance. I am always right behind him or holding one of his arm just in case he loses his balance. The other day, he wanted to climb up the stairs to see our babysitter. Then he wanted to descend the steps. This was not fun as pulling up and going down the stairs with 30+ lbs step by step was just a little too much for my back. This is the first time since transplant that he wanted to go up the stairs. Luke is now saying "bye bye" very well; especially after a segment of Thomas the Tank Engine. Today, grandma Ikuko came to help out. We all took Luke to Kelly Park and ride in the Kelly Park Express Train. We also went to the park adjacent to the Zoo. It was closing time and a wonderful man, the operator of a kiddy car ride, allow me to take Luke on the ride. Normally, parents aren't allow on the ride with the kid. He made an exception for Luke and didn't even charge us. Thank you Mr. wonderful man...

Luke's steroid dose has been decreased to 6mg twice a day...

Thank you everyone for your continue prayers for Luke and all the other childrens with JMML, especially Colby...

Tuesday, August 13, 2002 at 12:07 AM (CDT)

Day +147:

Hi everybody:

It's been 10 days since our last update. We had clinic visits on Monday 8-5 and Thursday 8-8. On Monday, Luke was due for his monthly IVIgG (intravenous immune-globulins; ie, stuffs to fight infection). Unfortunately, Luke's veins were not cooperating and we could not get an IV started. Most of Luke's peripheral veins are gone because of high dose steroids, being two years old (and fat), and multiple access in the past. Getting blood draws and IV's is a real torcher... On Thursday, Luke had blood draw for VNTR (to evaluate for percent donor cells in Luke's blood- hopefully 100%. We won't know the results for 2 to 3 weeks). Also on Thursday, we had our first JMML support group web chat session. It was a success!!! I really enjoy "chatting" with all the JMML parents. I learn a great deal from everyone... Friday was a special day. A high school buddy of mine who I have not seen in 18 yrs came for a visit with his family. Yeap, 18 yrs... We had a wonderful visit and went out for dinner. It's good to know that good people really don't change with time; sure, we are now married with two kids each; but, we are still exactly the same as in highschool. Thank you John, Viera and kids for your visit. It was very up-lifting for my spirits..... Thank you Luke for getting us together again. Thank you Luke for bringing us closer to our families, our friends, and our Gods.... Saturday was B-ball day in very hot weather... Gupta, good to see you come down and hoop-it-up with the boys.... Yesterday, Monday, was clinic visit day again. Mom was not feeling well so Mrs. Le, our baby sitter, came with Luke and I to the clinic. The IV God was smiling upon us as a special nurse practitioner from the PACU came down and was able to get an IV started and Luke received his IVIgG. Unfortunately, Luke's blood samples x2 was hemolyzed and gave a very high potassium and bilirubin level. This necessitated another trip to the clinic today for repeated blood draw. Only one stick today; again, the Gods were smiling at us... I am very happy to report that Luke is doing well. He is as good as he has been since transplant. He continues to make slow improvement in walking and attempting to make some sounds. He can walk with some assistance; thought, only when he wants to walk. He said "Ba" yesterday and "Ma" today. It fills our hearts with joy to see him improves. He is currently on full strength Vivonex formula....

Thanks sister Ha and Haus for the Thomas stuffs... It's great and Luke really enjoys them...

Thanks everyone for all your thoughts and prayers... Good Nights..

Saturday, August 03, 2002 at 12:50 AM (CDT)

Day +137:

It was one busy week. Monday was clinic visit with heme/onc. Tuesday was with cardiology. Wednesday was with surgery. Friday was Hickman's catheter removal day. We were at the hospital by 6:15AM. By about 9:00, we were in the recovery room. Luke did great. He was already awake and wanted his formula. Thank you Anesthesia and Pediatric Surgeon.... Luke was monitor for another 2 hours and we thought that we would go home early.... Wrong.... We had mentioned to our oncologist that we had noted that Luke had episode of rapid breathing intermitenttly the previous 2 days. We went from the recovery room to 2N treatment room where Luke was examined. The plan was to get a chest x-ray and some blood tests. We went to clinic D and got the paper work and headed for the lab. Without the Hickman's catheter, it is alwasys difficult to draw blood from Luke. It took three sticks. The last was by the supervisor of the lab who got a vein over Luke's 2nd left knuckle... We then waited around for the results. Everything looked normal. We got home at 4:30PM. Luke was tired and went to sleep early at about 7:00PM. This morning, dad went to play b-ball. When he got home, the babysitter reported that Luke was feeling warm. His maximum temperature thus far for today was 37.0 degree C. Not much of a temp; but, Luke was fatigue the whole day. He slept for most of the day and intermittently has episodes of rapid breathing (52 breath per minutes tonight). His heart rate is also faster (160 tonight). He feels like he has a fever in that his hands and feet and his head feels warm; but his axillary temps are OK. We are concerns that he may be brewing and infection. We spoke to our oncologist tonight and will monitor him closely. If his temperature goes 38 or higher, he will be admitted... Luke is tolerating his Vivonex formula. He is taking 75-100cc/hr of 1/2 strength. We are waiting for our shipment of Vionex before we advance him again back to 3/4 strength.

Everyone, a big THANK YOU for all of your thoughts and prayers for Luke and our families... Lets hope and pray that we will not need another admission; but, if we do, we are ready. We practically live there anyway... Goodnight.

Thursday, August 1, 2002, l0pm PT

Day +136: Thanks for all your continued thoughts, prayers, and support. Lam and I believe in miracles(we have seen 2 others recently) and to us Luke is a living miracle. Colby and family, we know God heals. We will be praying for you every day and know many others are as well.

Luke goes for his surgery tomorrow to remove his Hickman catheter since it's nonfunctional. Lam and I are very anxious after the last event during removal and placement. Thanks to the hard work of Dr. Pillai and Dr. Agarwal, we feel comfortable with the current plan. Luke's low molecular weight heparin (blood thinner) is being held tonite and in the am to prevent any increased bleeding risk during the surgery. He will receive a dose right after the surgery to prevent new thromboses or clotting of vessels. We pray that the surgery goes smoothly, that Luke has no problems with bleeding, excess clotting, etc.

He has done well on his oral feedings of Vivonex and is taking 3/4 strength up to 75-l00 cc a day. His stools have been normal in color and well formed except for one tonite which was more watery. In one to two weeks we will try to switch him to a more complex formula.

Please keep Luke in your prayers at especially around 7:30am tomorrow morning since that is the scheduled surgery time. We will try to keep you more up to date on his progress. Thank you and bless you all again for your continued prayers. Sarah, Lam, and Luke

Thursday, July 25, 2002 at 01:42 AM (CDT)

Day +129:

It's been a while since I had the opportunity to add a journal. Let's see... The most important development since the last journal is that Luke's catheter has stop working. Yep, the catheter that almost took his life only lasted a few weeks. We have tried TPA, clot buster, several times and HCl as well without success of clearing the lines. The plan is to have the catheter remove next Monday since it's no longer functional and just serves as a portal for infections. Because Luke was dependant on this catheter for all of his nutrition and iv steroids, we had to advance his oral intake dramatically and converted to oral prednisone. We quickly went up to 50cc of pedialytes per hour without problem. He is now on 50cc/hour of 1/4 strength of Vivonex. Vivonex is a complete feeding formula whereby everything has been predigested to the amino acids level and medium chains fatty acids. Thus far, Luke is tolerating this formula. We hope and pray that his intestine will be able tolerate this liquid diet... Luke's counts are slightly improved, WBC in the 4.8 range, Hgb 10, Plt 88k...

Christina, our 10 months precious daughter, left with her grandparents for OKC today. Aunt Ha has been here almost a week to help us out. Thank you grandparents for raising our daughter and Ha for all of your help. Thank you eveyone for checking in on us. Please say a special prayer for Colby and his family and send them a message at www.caringbridge.com/pa/colby. Colby is about 3 days ahead of Luke interm of transplant for JMML; unfortunately, his leukemia has relapsed.

Sunday, July 14, 2002 at 05:13 PM (CDT)

Day +118:

It's been a week since I last had a chance to add a journal. You figure, since we have been home that we would have more time to do updates; wrong, it seem like we have less time. When we were in the hospital, the person who goes home would do the journal. Now, we barely can find the time to do the updates... It's been one crazy week for us. We went to the clinic on Monday, Wednesday, Thursday, and Friday. We almost got admitted twice. Actually, we were admitted on Friday night for a whole 60 minutes before we went home. Earlier in the week, Luke's small port (blue) of his Hickman's catheter stop working. We tried TPA ("clot buster") twice without success. Our concern was that the blood clot in his right IJ was extending or new clots were forming in his major veins. An MRI/MRV was ordered on Thursday late in the day. We were to be admitted afterward. We had a repeat doppler ultrasound first and waited around for the MRI. Sarah had went home and packed. I stayed with Luke. Unfortunately, anesthesia was not available and we ended up going home. On Friday, I was at work while Mom and Luke with grandpa was in clinic. The large port (yellow) of Luke's catheter malfunction (I think??); blood was not able to be withdrawn from the port. This necessitate a heel stick for blood samples (not fun). After learning that the yellow port stop working, I had to reschedule a few of my late afternoon patient in order to get to the hospital. I arrive just in time for Luke's MRI/MRV. Luke was given IV medication but NO intubation. What a NOISY machine; even with ear plugs... I held Luke's foot and talk (yell) to him so that he wouldn's move during the test... Luke did great. He only flinch twice. Both the doppler US and the MRI show stability of the clots; actually, there might be a slight improvement, a miniscual, of blood flow in his left sub-clavian and IJ vein. No flow in the right IJ. After the MRI, a peripheral IV was placed because of the malfuntioned yellow port. It took several painful attempts; lessen with ketamine IV (sp). We were then admitted. The same room that we were there the last time for a week when Luke's catheters were changed and when we almost lost him... Surprise, Surprise, Luke's yellow port is now working beautifully. The blue port also was able to receive some flush; but very slowy and still would not draw. Because we now have a funtioning catheter, at least one of the port, Luke can receive his IV nutrition and medication and we went home after a 60 minutes admission. What a difference? going from a 3+ months admission to a 1 week admission to a 1 hour admission. We were just so happy to get out of that prison... Luke's hemoglobin is stable at about 10. His WBC is a little low (2.5-2.8). His Platelets is in the 70-80 range. His IV solumedrol is down to 14mg twice a day. He is still only getting 20ml of pedialytes three times a day by mouth and lots of medications. His anti-rejection medication is cellcept and IV solumedrol. He is on Dynacirc for blood pressure control. Lovenox, fluconazole, prilosec, accutane and bactrim and leucovorin on Monday and Tuesday. We are scheduled for clinic for Monday and Thursday and more as needed. Luke's face is much less swollen; almost back to his normal cushingnoid self. He is much more playful and we are retrying home physical therapy (standing and sitting to play with his train sets). Sarah and Jacob from next door came over to play with Luke this afternoon. He recognize them but did not interact much... He will...

Together with a few of the other parents affected with JMML, we have started a web based support group. http://groups.yahoo.com/group/jmml_support/

Sunday, July 07, 2002 at 01:34 AM (CDT)

Day +111:

WE ARE HOME!! We came home yesterday. It is so much more comfortable here at home. Friday and Saturday, Luke face and neck continues to shrink. He actually almost has a neck now... He is on TPN and Lovenox (low molecular weight heparin). The TPN is now 24hrs instead of 16. His Lovenox is a subcutaneous injection 2x/day. Tonight, his face seem a little more swollen. His rate on TPN has been decreased by 50%. We have a clinic appointment tomorrow at 1:30pm. I am too fatigue now to type any further tonight.

Thursday, July 4, 2002, PT

Day +l08: Dear All, Luke is feeling a bit better today. His face is much less swollen. Interestingly, he has visible small veins on his scalp, back and chest which are some of the collaterals which were probably present and very much in use now since his major drainage of venous blood from the head and neck is blocked. He may be also opening up some of his blocked vessels we hope. He continues to be on and off very agitated and very hungry and has had many wagon rides today. The bad news is that his hemoglobin(red cell count) continues to drop and is now in the l0 range from the l2 range before surgery. Also his platelets are dropping and are close to l00 whereas before surgery they were in the l20's. Also his white count was low today at 3 where normal starts at 5. We are slowly advancing his IV feeding to try to get him to maintenance which is the lowest amount his body needs at 50cc an hour. He is at 35cc now and every l2 hours will be increased by 5cc an hour to see how he does. I believe that when he is very agitated he likely has a headache or abdominal pain from bleeding and GVHD. We are giving him Tylenol #3 or Fentanyl as needed but need him to be awake enough to judge his mental status.

I know that God has been with us every step of the way and especially the night his intracranial pressure was elevated. Though his CT of the brain was read as normal, I don't agree and believe he had hydrocephalus from increased fluid and pressure in the brain. It is not luck that he is alive. Thank all of you for your prayers since I believe God hears you all and continues to guard Luke. Please continue to pray for his healing and recovery especially with him having the bleeding from the blood thinners. I have placed all my faith and trust in Him.

Thanks to the Coles, Danette, Dana,Jennie and Nathan, Joan, Chris and Gooch, Chris Green, and Sue and family as well as all the rest of you out there praying for Luke. Thanks Jack and Rosa for the Little People toy and lunch.

Wednesday, July 03, 2002 at 01:32 AM (CDT)

Day +107:

Dear family and friends:

What should have been a straight-forward procedure on Monday turn out to be another nightmare... Again, we were staring at death straight in the face... As I mentioned in my last journal entry, on Monday, Luke's Hickman catheter on the left needed to be removed and a new one placed on the right side. This was because the old Hickman catheter had stop working properly and an ultrasound on the previous Friday show that Luke's left internal jugular (IJ) vein was completely occluded. His left subclavian vein (SV) was partially occluded. The left and right IJ are the major veins draining the brain and skull. The SVs drain the arms. There are small collateral veins that drain these structure as well... As you recall from the last journal, post-op, Luke's face was swollen (we thought from the anesthesia). That afternoon, Luke was asleep from the effect of the general anesthesia. Around 5pm, he started to have some vomiting; again, we thought from anesthetic effects. His face was still puffy. At about 8pm, we noted that his left arm was mottled and a different color than his right arm. We, and our on call team of physicians, immediately knew that something bad was happening. Luke had a superior vena cava syndrome (SVC). Luke's mental status had worsen. His breathing was irregular. His heart rate at a point had drop to the high 80's. His blood pressure was very high. We were all suspecting that his intracranial pressure had increased, producing the Cushing's reflex. The pressure in his head was increasing and compressing his brain, causing a decrease in his mental status. This eventually lead to an emergent CT scan at about 5AM. The scan result did not show evidence of cerebral edema (brain swelling). His ventricles were a little more dilated when compare to his last scan. This was a relief since we did not see cerebral edema or brain herniation... We slept for about 2 hours. At about 8am, Luke had two ultrasound studies. The first show that Luke's left IJ and SV was now totally occluded. It also show that Luke's right IJ was also occluded. When compare to the ultrasound from Friday, maybe the right IJ was not totally clean... The right SV was still open (this drain the right arm.) The cardiac echo show that there is a "moderate" clot in Luke's right atrium (one of the chamber of the heart). When compare to the cardiac echo done before the transplant; maybe there was a small clot there already... This was very devastating and disturbing news for us... Why were these results not seen before?? Luke's management might have been very different if these studies were read correctly the first time... As I mentioned earlier, again, we were staring at death staight in the face... Both of the major veins draining the brain and skull were completely occluded. He was definately symptomatic; but yet, he was still with us... Most people with Luke's condition would have already left the planet... Luke's must be draining via his vetebro-basilar venous systems and whatever other minor venous systems that drain the brain and skull... Most superior vena cava syndrome (SVC) develop insidiously; e.g, from a lung cancer compressing the superior vena cava (the major vein draining the upper body before entering the heart/right atrium). Luke's was acute. Our deduction is that, when the left Hickman was pulled, the left side went from a partial to a complete occlusion. The collaterals then picks up since his left arm had improved in color. When the Hickman was introduced into the right side via the right IJ, the right IJ became completely occluded. Because blood could not drains from Luke's brain and skull, the pressure in Luke's head increased, causing facial swelling, sedation, vomiting, headache, etc... Adults with clotting of some of these major veins report that they have a sense of "impending doom." Luke was started on Enoxaparin (LMWH-low molecular weight heparin) on Monday night when we suspected SVC syndrome. He continues on this blood thinner to prevent extension of the clots and to keep the collaterals veins open. Unless Luke's condition worsen dramatically, we (in agreement with our treating physicians) have decided against using a "clot buster" such as TPA. Luke's risk of bleeding in his gut, his recent wounds from the Hickmans', and possibility of bleeding in the brain and other organs is too high and would out weight the benefit of using TPA. We hope and pray that the collateral circulation will develops quickly... We will deal with the chronic complications as they develops... Luke had a MRI/MRV of his head, neck and torso today to evaluate his vascular system. No other clots seen except those reported earlier. Luke's face and left arm is still swollen; though, slightly less than on Monday night. He continues on the blood thinner. His stools is a darker color. His Hgb drop from 12 to 10 today. We are worry that there may be some small bleeding in his gut because of the LMWH... We are in the eye of the perfect storm...

Thank you uncle Jack for dinner tonight...
Thank you everyone for your thoughts and prayers...
Thank you Luke for being such a strong and brave boy... We are so proud of you...

Monday, July 01, 2002 at 02:15 AM (CDT)

Day +105:

Last night Luke was very agitated. He had to receive benadryl, tylenol with codeine, and 2 doses of haldol. Wagon rides started at 5am. At about 7am, his IV infiltrated (stop working). His surgery was moved up a couple of hours. The procedures took about one hour. In the recovery room, we noted that his face was very puffy and very flushed. With past anesthesia, Luke would get flushed; but, this time his face was more swollen. Luke slept all afternoon and woke up at about 8pm. His face was still swollen and we noted that his left arm was swollen and dis-colored (mottled in appearance). To us, this represented a superior vena cava syndrome (SVC); ie, there is now a complete occlusion of his, probably, left sub-clavian vein. This is a complication that we were hoping to avoid... The physicians on call were called to evaluate Luke. After much discussion with attending physicians, we have agreed on giving Luke some low molecular weight heparin to prevent futher clotting. Even before the treatment, Luke's arm has spontaneously improved in color. His face is still very swollen. The plan will be to do some type of imaging study in the moring to access the extent of the clots...

Thank you physicians on call and attending physicinas for your management of Luke. Thank you Drs. Jensen, Wang, and Lien for your advice. It is very reassuring that I can call you guys for your thoughts and opinions. Thank you for being there for us in these difficult times...

Please continue to pray for Luke and our family and for Colby's family and other families with sick childrens...

Sunday, June 30, 2002, PT

Day +l04: Lam and I are anxiously awaiting Luke's surgery to remove his Hickman catheter. The surgery is scheduled for tomorrow at l:30pm. Our team of doctors felt no anticoagulation was needed this weekend. Luke has done well except for being extremely agitated since Friday nite. We are wondering if the agitation stems from the TPN (IV feeding) being stopped then. It was initially felt that his peripheral IV (into the right arm) needle was too small to give the TPN. But Leslie, nurse extraordinaire on 2North, found out that this wasn't true but that the dextrose level would need to be decreased. So, tonite, after two whole days without TPN, it was restarted. We've been giving extra doses of Tylenol with codeine and benadryl in order to calm him. It was also unclear if he was having more pain. We have not yet met the surgeon who will do his surgery so we haven't been able to ask him our main questions about the risk of embolization from the clots and what can be done to prevent this occurrence and if it occurs what will be done.Will Luke's TTP affect the surgery? Our team reassures us that clotting from catheters is common and it is a common procedure to remove them. From cruising some internet info, it looks like the risks may not be as high as I would imagine, but I'm still quite nervous.

Our "One Hand Luke" may also be frustrated that he can only use his left hand, since the other has his IV in place and a board to stabilize it. He found it hard to play with his playdough, trains, and books today. We hope by tomorrow's end, the IV will be removed. Of course the hunger issue is always present. Lam and I have grown accustomed to spelling out any food related words that Luke may know. "Lam, do you want to go and E-A-T D-I-N-N-E-R now?" Words like milk and rice always need to be spelled out. Sometimes it can get a little ridiculous since we aren't sure what food words Luke knows. "Lam, how did you like the V-E-A-L S-C-A-L-L-O-P-I-N-I?" Of course, those who come to visit have to be pre-warned about the situation. You'd be surprised how many shows and commercials, books and magazines, pictures, etc. have food as a subject and need to be avoided. If on a wagon ride we go on an elevator with people holding food, I just ask them to hide the food since Luke can't eat. They are always cooperative.At home, our kitchen is open to the family room so we've put up sheets around it. When eating we will sometimes stick our heads in, stuff our face, then come out and smile at Luke with our cheeks bulging. We hope that this doesn't last too long.

Please say a prayer for Colby Cole, Luke's JMML brother, who has relapsed. We are praying for 2 other very special people also.

A belated thanks to Nicole Trieu and family TJ, JonTom, Quy, and Mimi for the tricycle and all their help entertaining Luke and helping us move to and fro. Thanks Vinh for your help today and always. Thanks Mom for the great food and my in-laws again for their nonstop care of our daughter Christina who is blossoming like a rose and Lam's mom's cooking and prayers. Thanks to Uncle Lich's whole family for all their continued help and for having my in-laws and Christina over when she was sick. Thanks Pearl for the great sun proof hat and shirt and all your other work.

If anyone has info on strollers or other devices we can cart Luke around in which shield from the sun, please let us know. We just found out that Radio Flyer, maker of Luke's wagon, makes a cover and we ordered it. Thanks Radio Flyer.

To all of you who think of Luke and us thank you. I'm sorry we can't answer all your wonderful messages but they mean a lot to us.

Saturday, June 29, 2002 at 02:08 AM (CDT)

Day +103:

It was good while it lasted, our ten days out of the hospital... Home is definately where the heart is... I spent the night at the hospital with Luke. He did OK through the night. I had to give him a dose of benadryl at about 5 AM this morning. We both slept until about 9:30. He had 2 small BMs last night and many wet diapers... Today, after some discussion with the team, Luke had an ABG done to check the arterial oxygen content of his blood. He had two episodes where he transiently drop his O2 saturation to 89% last night. He was put on some O2 "blow by." Luke actually did not needed the O2 througout the night as his O2 saturation was always adequate except for the two episodes... His ABG result was excellent... Luke's behavior was much worse today... He moan and cried for most of the day... He moan in the wagon... We think that its a combination of not getting the TPN, being off the clonazepam, being torcher for the ABG, and just being back in the hospital... Luke, we are so sorry that you have to suffer again...

For those of you that is local to the Bay area, the Tzu Chi Foundation Northern California chapter will be holding a Health Fair and bone marrow drive at the Milpitas Community Center on June 30, 2002 from 12 – 5 pm. The address is 175 Dempsey Road, Milpitas, 95035. For more info, please call 408-262-3389.

Thanks uncle Jack for the food and your help today.

Thank you for checking in on Luke and our family. Please continue to pray for all of our JMML families; especially for Colby and his family (http://www.caringbridge.com/pa/colby)

Friday, June 28, 2002, PT

Day +102: Luke was readmitted to Packard Children's Hospital today. The admission was a shock to us all even though perhaps in the backs of our minds, we expected it might happen. Luke has been having problems with blood draws from his catheter in his chest (Hickman) for some time, even l-2 weeks prior to his discharge. Unfortunately, this problem was not addressed as an inpatient and resolved. The problem continued to get worse as an outpatient to the point where no blood could be drawn from his line even though his IV feeding could infuse. A dye study yesterday of the line suggested a problem and an ultrasound today showed a clot in the left internal jugular vein and the left subclavian vein. It appears that a clot may be extending from Luke's catheter. We are extremely nervous about this since clots can break off and if large enough in this case can go to the lung causing possible death. Luke had multiple episodes of shortness of breath towards the end of his hospitalization as well which we inquired about but since his oxygen saturation was good and chest xray not changed , it was felt not to be significant. In retrospect, Lam and I feel that Luke may have been throwing small emboli (clots) from the larger clot to the lung. The plan is to possibly do nothing until his catheter is removed on Monday. However, you can imagine how anxiety provoking this is. Lam and I are wondering if anticoagulation should be started in order to prevent any further emboli, especially a large one to the lung. I'm wondering if Luke should be in the ICU. We are unclear about the plan of action if he does throw a clot. The resident tonite will discuss these questions with the fellow and attending. Luke had to have a peripheral (arm) IV started tonite, not fun for him, so he can receive fluids and medications if needed. On top of this, it appears that his gut GVHD may be worsening again. He was started on 60cc of pedialyte 3 days ago. His steroids have been tapered over the past few weeks from 2lmg twice a day to l6mg twice a day. His stool is now green and mucuslike and watery with flecks of blood. He also has more pain and is very distended. In the light of his latest problem, however, the gut GVHD may go on the back burner for now. His counts remain stable with platelets at ll0 yesterday. His liver enzymes are up for unknown reasons.

In residency we would say that an intern or resident who had bad luck (for example getting lots of admissions usually or difficult cases) had a black cloud. In Luke's case, he has a storm. No, I'd say a hurricane.

When we first got home, I felt a sense of joy and comfort. It was strange, but all the times we'd alternate and come home to sleep I never felt I was really home. It was only when we were together again as a family that I felt that I was home. Then ironically when I was unpacking today at the hospital, I felt like I had just been on a vacation and was returning "home" to the hospital.

To clarify, we did stay at the hotel which is being used while the Ronald McDonald House is undergoing rennovation for about a week, then returned home.

I want to thank the Vigen family for their great box of gifts for Luke who has and is enjoying each one. Thanks to the Sumida family for all the great food. Thanks for the prayers and support from the Heritage Baptist Church and the other churches in the area praying for Luke. Please again pray hard that he will make it through this next hurdle. His latest bone marrow biopsy showed about 96% donor cells. His leukemia is still at bay.

It's funny but I sometimes feel that I love Luke more than I would have if he hadn't become ill. Perhaps it is just that the threat of losing him so many times has made us appreciate him so much more. Or perhaps each smile, or laugh, or hug means so much more than it did before because we are learning to focus on that moment. We can only pray that with God's help, we will have many more such moments.

Tuesday, June 25, 2002 at 01:41 AM (CDT)

Hello Everyone,

Sorry we haven't had the opportunity to do the journal this past week. Just a few note for tonight. We are home!!! Yeah, in our own home... Luke is stable and doing OK. His WBC and Hgb is holding steady. His platelets was up to 111K last Thursday and 106K on Monday. He is not yet allow to eat or drink. He is getting 16 hrs a day of TPN (intravenous nutrition). Lots and Lots of oral medications.... Goodnight for now... Thank you ALL...

Monday, June 17, 2002 l0:18pm PT

Day +91: Well we are a go for tomorrow discharge. Please pray that all goes well tonite, i.e. no fever, etc. Luke was looking quite chipper today and this was noted by myself, the team and the physical therapist. He was very active in physical therapy and showed some of the old interest in checking out different and new toys. His counts were good with rising platelets to 76, stable hemoglobin at 12.3, and stable white count at l0. No fevers were noted though he occasionally feels warm and had a temp of 99.3 this am. Not enough to keep him here though. I really think it is time to leave. There is nothing else that can be done as inpatients that we can't do as outpatients. We will have PT 2-3 times a week, clinic visits Monday and Thursday with labs. A home health nurse will come out to show us how to run the IV when we get to the motel tomorrow. Our new place of residence will be a motel l5 minutes from the children's hospital. I hear there are 2 queen size beds so finally mom, dad and Luke can stay overnite together. There is a kitchenette as well. My biggest worry is how to give Luke the wagon rides he is so accustomed to! We don't want him to get too much sun exposure. I'm sure we'll think of something. Of course, the true worry is how to proceed with the diet and whether Luke's gut will hold up to even a very slow dietary taper upwards. Our clear signs that he is doing worse will be increased and greenish diarrhea, fall in platelets, and increase in LDH and schistocytes-part of the TTP he has which worsens with worsening gut GVHD. Dr. Pillai has called a few places like Dana Farber for more info. We will meet with our main BMT doctor, Dr. Agarwal, tomorrow to finalize a plan. We have a plan for pain control which is prn tylenol with codeine. Thanks to those who have responded to our pleas for info on gut GVHD. Thanks to and good luck to the Ledesma family at Denver Children's in BMT. We will follow your advice. We are also planning to contact the doctor in Michigan mentioned on email. Thanks to Elaine and Pauline, her sister for the wonderful visit today and gifts for Luke. Pauline, you are a true inspiration,to me and I'm sure many.

We still have a long journey ahead of us and we don't know what the outcome will be. But, we will continue to give this battle our best effort for the sake of our son. I continue to pray that even if it is not God's will that Luke live, that he change his will to allow Luke to be a witness to his power as the great physician and his mercy. Pauline reminded me again today to try to live in the moment for that may be all we have and we miss so much of life's joy when we constantly live in the past or future.

We'll let you know tomorrow where we are and how to reach us. Thank you again for your prayers.

Sunday, June 16, 2002 at 01:02 AM (CDT)

Day +90:

Luke slept fairly well last night, only waking up once or twice. He had no stool overnight but two today. We have no blood test result to report. The nurse was unable to draw a chemistry panel from Luke's catheters. No CBC was schedule. Hopefully, they will be able to do both test tomorrow. No fever (YEAH!). We are still shooting for Tuesday to be discharge from the hospital. Luke's is playing more with his toy trains. He still refuses to walk or stand for any lenght of time... Why walk when you can be carry by papa or pull in the wagon? Luke definately needs more physical therapy...

Thank you Ken and Vinh for your help today. Vinh was able to pull Luke in the wagon while Sarah and I took a coffee break today... Goodnight..

Saturday, June 15, 2002 at 9PM

Day +89: Today Lam was able to play basketball and as usual returned looking very happy. I had a pretty restful nite with Luke with him awakening only once--which is a first in many weeks. His CBC was done last nite and his white count is more elevated at 12 compared to 11.6 yesterday. He hasn't had a fever but continues to be very cranky--we don't know if this is from a new infection, steroids, hunger, pain or all of the above. We just pray that he doesn't have another infection. The other dreadful thought is that his leukemia has returned and is causing a bump in his white count. We should get the results of his recent bone marrow biopsy this coming week. We pray that we can be discharged this week. It would bring back some sense of normalcy to our lives. Today, as I was pulling the wagon around the hospital, I was feeling very frustrated and angry. Why were we stuck here in the hospital on a beautiful day for the umpteenth weekend without a solid plan for what was going to happen with Luke to help resolve his GVHD. While other people, including all of our attendings, were out enjoying the great weather and likely having a wonderful time, we were sitting here watching Luke whimper and moan and suffer. I know some of this is displaced anger, but it's hard to live with uncertainty day after day without a plan of action based on the information from others. I can only hope that the doctors are calling their colleagues around the world trying to find out about similar cases and the best course of treatment. If not, of course, Lam and I will, but we will have a harder time getting access to the information than people in hematology/oncology and bone marrow transplant. Lam and I are now trying to come up with a plan of action that makes sense to us to treat Luke's gut GVHD. We will proceed very very slowly. Luke is now having brown stools-about 4 in 24 hours-but still with some occasional blood which means his gut is still inflamed. Other frustrations we've had involve psychiatry. We were told to use haldol for agitation which we've been doing and which works well. A few days ago, however, the attending stated we should only use haldol for very severe agitation i.e. aggression, jumping off the bed. So since Luke is still daily agitated but not as bad as before, we shouldn't be using haldol. This was perplexing to me since he had reassured us of its safety and since it was working well. Luke was started on Klonopin which has not shown a clear affect in behavior control. We were also told by the resident when I asked about pain control for GVHD that they don't like to put patients on chronic pain medication for pain control of gut GVHD since it may affect the GVHD and that they would tell the patients to just "let it pass" when they had cramping episodes from the gut GVHD. This was in direct contradiction to what Lam had just read in the textbook on Bone Marrow Transplant regarding pain control in gut GVHD. And it seems analogous to telling a woman in labor to just let the pain pass. Sorry, that recommendation seems a bit inhumane for me especially since Luke spends a lot of time whimpering and possibly in pain. We have a lot of issues to settle before leaving and hope we can reach agreements with our team about the above issues. Luke continues in the fight for his life. If we can't resolve the gut GVHD, quite simply, he will die. Please pray that we can get the information regarding how to treat him and work together with our medical team.

Thanks to the person from Heritage Baptist who brought the pasta, bread, salad and great brownies this week. I'm sorry I didn't get your name since I wasn't home. Thanks to Sue for the gifts and I know you will be fine. Thanks to Cory for the ravioli, salad, and cookies and a nice time talking to you at lunch, thanks again to Elaine for coming by today and the puzzle for Luke which he is enjoying. I hope to meet your sister soon.

Please pray that Lam and I can hold on to our sanity. If you have any new ideas about distracting Luke, please let us know.

Thursday & Friday, June 13 & 14, 2002 at 01:15 AM (CDT)

Day +87 & 88:

It's late Friday night and I just got home from the hospital. I have been with Luke for the last 48 hours. I am tired but look forward to playing b-ball in the morning...

Yesterday, Thursday, Luke's WBC increased to 8.6 and Platelets increased to 64K. His HgB was unchanged. Today, his WBC increased to 11.6 and platelets decreased to 62K. The change in the platelets is probably not significant. The increase in WBC is quite significant; especially the previous few days he was in the mid 5's range. Elevation of WBC can suggest infection. Luke did not have any fever in the last 48 hours. I was on the look out for fever all day. I hope and pray that he will not have a fever tonight. We collected some urine today for analysis. It was OK. The only thing different that we have recently done was to switch to oral CellCept and stop the Acyclovir. We need to remember that last thursday (06-06-02) that Luke had S. aureus growing in his blood. He was bacteremic with a very virulent organism. He has been on Vancomycin since that time... Let me ask you this. If this was your child and his WBC has increase from 5.6 to 8.6 to 11.6 in the last three consecutive day, would you not check it again tomorrow? Well, the team was not planning to... We found this out from the nurse when I mention that I want to know what the WBC will be tomorrow... The team want to skip a day to minimize the amount of blood draw and risk of infection. I had a long discussion with the on-call resident about why we wanted to check a WBC tomorrow. The resident will check with the on-call fellows. If the on-call fellow disagree with us, I guess we will have to call the attending either tonight or early tomorrow morning. I suggested that if tomorrow's WBC is decreasing then we can switch to every other day schedule. I don't see why they did not make the switch when Luke's WBC was in the mid 5's range for at least 4 or 5 days earlier in the week... It's totally unbelievealble to me that these physicians assume they know what is best for my child or that they think they know my child better than I do. At most, they spend 5 to 10 minutes a day with Luke. On many days, they don't even examine him. For example, they did not know that today, his skin feels cooler than usual... Today, when the team came by, I expressed my concern to them about Luke's rising WBC counts... I expressed to them that some of his diarrhea stool had went to the front side, contaminting his male organs. We agreed on checking his urine. I placed the urine collection bag on myself... My point is, they knew about my concern with the increasing WBC as possible infectious in nature and what did they do? They decided they want to skip a day without checking his WBC... I ask you, is this logical?? I think that if this was their child, they would check a WBC tomorrow... Some of the resident physicians are so young that I doubt if they are yet marry or have childrens. They definately cannot relate to what it's like to have a child with leukemia... If checking a WBC means so much to the family; hell, give it to them... Did I not cancelled the endoscopies when I thought that the results would not help us change our management? I did... If Luke's WBC is even higher tomorrow, depending on how high, it would definately change our management. We might need to look harder at potential focus of infection, recurrence of leukemia, etc... I hope and pray that Luke's WBC will improves tomorrow and that he continues to do well so that we can be discharge next Tuesday... We want so much to vacate this place for so many different reasons...

I forgot to thank Anna in my last journal for bringing the wonderful Chinese food and helping with Luke on Thursday. Also, a big thanks to Mimi and T2 for helping as well. Thanks TJ for your help today... Lastly, thank you all for keeping Luke's and our family in your prayers and for reading our journal... Goodnight and Happy Father's Day to all the father out there!!!

Wednesday, June 12, 2002 at 11:33 PM (CDT)

Day +86: Well, not much new to report today. Luke's hemoglobin, platelets, and white count are about the same as yesterday. But it's great that he has not had any stool since yesterday at 5pm. He continues to be absolutely ravenous. Today he grabbed some white playdo and put a gob in his mouth. I retrieved it in the nick of time but not before he bit my finger hard. He was also chewing on some of his lego toys which were white and gold--I think he thought they were also food, i.e. crackers, bread or cheese. For some reason he is also putting his Thomas train in his mouth and trying to chew it. I tried a pacifier on him today but when he found out he couldn't suck anything out of it, he became angry and threw it down. He continues to grab his medications and put them in his mouth, this in a boy we used to have to hold down with two people to force him to take his medications. It is all still painful to see. I don't believe anyone could ever get used to it. Today I thought of the starving children around the world and what they and their parents must go through. At least, in this situation, Luke is receiving IV feeding so getting his needed nourishment.

I asked the team today if they had contacted other physicians as in other bone marrow transplant units or others experienced in gut graft vs. host disease to get more info on treatment. Dr. Pillai contacted the adult BMT MD and Dr. Castleberry the head of the JMML protocol. They had seen cases such as Luke's. Small intestine GVHD takes a long time to heal. In other cases it can take months and the pace from orals to solids is very very slow. It was reassuring to hear that it had been done before. I would like to get more information about specific cases and the diets tried and pace. Thanks Dr. Pillai for your efforts.

Thanks to Elaine for her visit today with the great casserol. You kept me great company on the wagon rides with Luke. Also, thanks to Heather for her visit on Monday and the great food and company also. Both of your visits were very comforting. Besides distracting Luke from food, it is also very helpful to Lam and I to be distracted from Luke's moaning and whimpering for food. When we're alone with him, it can be quite depressing. Thanks to Mimi and Billy for helping out with Luke also as well as Lam's Dad and Mom and for Dung for the rides again.

We are praying that we will actually be discharged next week if all goes well. I saw a sign saying Happy 4th of July in the hospital and for the life of me I couldn't comprehend what it was saying. The days, weeks, and months and the hospital have all blended together into one long seasonless stay. It may as well be Christmas for all I know.

Please continue to pray for Luke's continued healing. Thank you all for all your prayers and best wishes for Luke and for us. I know that God answers our prayers in so many ways every day. Last week, I was beginning to lose hope of winning the battle, but with the support and help of you all, hope is renewed and faith in God alive.

Monday & Tuesday, June 10 & 11, 2002 at 12:57 AM (CDT)

Day +84 & 85:

June 11, we have been in the hospital for 3 months; actually, 92 days... An eternity in our eyes... Will we ever get to leave the hospital? The answer is maybe... If everythings work out right...

Luke's behavior in the last two days has worsen. He is much more irritable and cranky; the whole day, and night. He has figure out that we are deliberately starving him. He gets nothing to eat or drink except his medications. It's scary that he now enjoys drinking his medications that he use to hate. It so sad to see him wimper and sob. He did this the whole day today. He was up from 3 to 5 AM earlier today and yesterday. Wagon rides at 5 AM is NO fun. He even moan while in the wagon... Haldol and Benadryl was needed. The Haldol at the current dose of 0.125mg appears to be not working as well as previously.

Luke's diarrhea has lessen in frequency and possibly in volume as well. It is now less green than before but still with evidence of blood. Luke's WBC & HgB has been stable and normal. His platelets in the last two days has been at 63K. We decided to cancell the endoscopies procedures that was schedule for today. Interventions are done to acquire information to help with management decisions. Because we feel that the management of Luke's condition would not be altered by the result of the endoscopies, the risk would outweight the benefit and the procedures were cancelled. I had a bad feeling that if we had done the procedures, something bad would happened. Luke's intestine is very inflammed and friable and to go in with a scope and doing biopsies, the chance of perforating the gut is too high for me to accept; especially if the result would not change my management...

We had a "Care" Conference with members of the team today. We are preparing Luke for a possible discharge date next week. His Acyclovir has been stopped. CellCept will be converted to oral form starting with tonight dose. We will see how his gut does on oral CellCept for one week. He will continues on iv steroid (solumedrol) at 21mg twice a day. His Vancomycin will be finish next Monday. Assuming everything goes smoothly, Luke will be discharge to a motel in Mountain View (Ronal McDonald house is under renovation). His nutrition will be intravenous with TPN. The plan will be to "wake up" his gut very very very slowly... Please keep your fingers cross and the prayers going so that we may be able to leave the hospital next week... Is that a sailboat I see floating on the surface of the ocean?

GoodNight.

Sunnday, June 09, 2002 at 12:41 AM (CDT)

Day +83:

I was with Luke last night. He had one dark green-color jelly like stool at 1:30AM and one green stool tonight. It was both heme negative; ie, no blood. Luke slept fairly well with the help of benadryl and a dose of Haldol. The bacteria grown from Luke's blood is Staph. aureus, a very aggressive organism. We are still awaiting the bacteria's sensitivity report to see which antibiotic(s) the organism is sensitive too. The Vancomycin appears to be working. No fever in the last 24 hours. Luke's WBC and HgB are normal today. His platelets is 56K (YEAH, a slight increase). Luke looks very comfortable, much more interests in his trains, etc. This is because we are resting his gut and treating his infection. His eye lid infection is very much improved. Occasionally he complains about us "starving" him; but, it's not too bad. I just take him for more wagon rides. I must admit, I am a bit sore today from playing 3 hours of b-ball yesterday and pulling Luke around the hospital most of yesterday afternoon, evening, and some this morning... Thanks uncle Jack for helping out with Luke this AM. Thank you ______ for coming to visit and praying for Luke today. I am sorry that I forgot your name. I am very bad with names... Thank you J. Kelly for the information on Remicade. We greatly appreciate your help. To re-iterate Sarah, if anyone out there with personal experience, has info or contact info that can help with severe gut GVHD, please e-mail us. Any suggestion or information will much appreciated...

Thank you for reading our journal and signing our guestbook. Goodnight..

Saturday, June 8, 2002, l0:25pm PT

Day +82: As Lam reported, this week has been a trying week. We were so hopeful that on this, our third attempt at introducing solids to Luke's diet, he would tolerate the solids and be able to go home. But again we learned that his gut is not ready to accept solids. Thanks to Thanh in Norway for calling just a few minutes ago to put some perspective to this whole situation: She had the experience of being hospitalized for the first 2 years of her life for numerous illnesses. Her mother, on recalling that time, still feels such pain that she cries and yet Thanh does not remember any of it. We hope that Luke will also live and not recall these painful times. Also, Luke is physically nourished by his IV feeding. It is the emotional suffering, as Thanh pointed out, of his yearning for food that is so hard to watch. We feel we are starving him and he feels the same. Yet in the big picture, his not eating or eating very little will allow his gut to heal and hopefully be cured of the GVHD. We must keep our "eyes on the prize" which will help us endure and keep to the plan of first no food until his gut is ready and then very slow advancement. Because his stool in the last 24 hours was bloody, we have made him NPO again (no oral intake). He will have a gut biopsy again on Tuesday or Wednesday. We hope the biopsy will reveal the state of his gut. I am praying that it is improved over the previous one. The biopsy may help us determine the next step in management. Please pray that Lam and I can remain strong and keep Luke distracted from his yearning for food and drink. Luke's counts today were: Platelets 49K a little improved from yesterday, Hemoglobin ll.4 a bit reduced from yesterday, and white count 5. He has grown out staphylococcus from the blood cultures which may have come from several sources as Lam stated. He will remain on IV antibiotics for at least l0 days. Lam and I are trying to get him reconditioned after being in bed for most of 3 months. He is able to walk but unsteadily. He cries or whimpers when we try to make him walk. He may be having some muscle pain or just feel very weak and tired. We will try to encourage him to advance a little every day.

We now believe that the TTP was triggered by Luke's GVHD. Every time Luke's GVHD worsened, his TTP worsened. For example, after introducing crackers this week, we felt the gut GVHD worsened with more inflammation. At the same time, his red cells had increased hemolysis or break down causing his red cell count to drop leading to his transfusion. He also had the drop in platelets from the 60's to the 40's due to the consumption of the platelets in clotting of small vessels which is all part of TTP. So, in essence, we feel that if we can control or heal the GVHD, we can control or heal the TTP.

We'd like to ask that if anyone has time to do any research into gut GVHD and how to advance the diet, please do so. We are trying to do this ourselves, but time may be of the essence. If you have experienced gut GVHD or have a child or know someone else who has,please give us any advice that was helpful for you. There is no "gold standard" for how to advance the diet so we are doing this by trial and error. If you know of any experts in the area of GVHD of the gut or diet for it or treatment of it, please let us know their names so we may contact them.

Today, I asked a question I shouldn't have asked the team. I asked what Luke's prognosis was. I was told "not very good" since he's had gut GVHD for at least 6 weeks. I probably knew this in the back of my mind, but to hear it was devastating. Lam reminded me later though that when Luke was diagnosed with JMML we were told there was a 20% in 5 year survival rate. And yet we've met on the web many JMML patients doing well several years out. We were also told we had a "slim" chance of finding a donor. Well it was slim indeed: l in 4.5 million, but we found one. Luke has come so far. He has always had a poor prognosis yet he is alive and kicking (and screaming). We hope to yet overcome this battle with GVHD and TTP. We hope with God's help and everyone's prayers, that he will beat the odds.

Yesterday, Mom was overcome by emotion and crying in front of Luke, which I usually try to avoid in order not to stress him. He began smiling. I knew from prior experience that he was trying to make me happy by smiling since he knew that when he smiled, I would always smile back and look happy. My little boy just breaks my heart. He is so wonderful and so precious to Lam and I. Another mother related to me that her husband told their son's doctors "You'd better save my son, because I can't live without him." That's how we feel.

I had one of those bad nites last nite with Luke. He was agitated from hunger and or pain all nite and we didn't get to sleep until 5 am. I kept praying for God's help to calm him and give me the strength to bear everything since it all seemed so overwhelming. I was actually angry because there was no instant answer to my prayers. But today my brother, Ken, helped with Luke pulling him back and forth up the hallways of the hospital (if you like mall walking you may want to try hospital hall walking). He had a few good three stooges jokes which made me laugh. His help allowed me some break time to shower, eat, etc. Thanks Ken. Also, spending time with Lam and Luke tonite was nice and talking with Thanh helped keep perspective. Thanks Thanh. I know that God works through these different people and does answer our prayers in so many different ways. There is a bible verse that says something about God not giving us more than we can bear and that he gives us an escape so that we can bear all things. I can see that every day.

Our thanks to Dr. Veneris for his work on Luke's case. We appreciate his efforts and his honesty and compassion.

If anyone is interested in getting some exercise, please just call us about taking Luke on wagon rides. I feel like I'm finally getting some good exercise but it can be a bit tiring doing this hour after hour. If you want a work out, just call. Lam who is already Mr. Thin has little reserve to spare. I'm afraid if he keeps on walking, he may one day disappear and there will just be a wagon with little Luke sitting in it! Mom on the other hand has a lot of reserve to spare and hopes to reduce it. We could also use a companion for those walks back and forth. This is of course, Luke's main way of being distracted from food and so is critical in the next several weeks to come.

To Sue, I hope you're feeling better and doing well. To Debbie, thanks so much for the great Thomas train with all the pens, crayons, etc. Luke's enjoying it immensely.
To all of you signing the website, thanks for the messages of encouragement. Please continue to pray for Luke's recovery. God bless.

Friday, June 07, 2002

Monday June 3 - Friday June 7, Day +77 - +81:

Today is Friday, another week has gone by and we are still in our prison. We attempted to journal this past week but had problem with our ISP from home. The person with Luke at the hospital did not have the opportunity to do the updates; by the time Luke fall asleep, you are so exhausted that you have to close your eyes yourself before Luke wakes up again...

In my last journal entry, I down-play the fact that Sarah and I had not been out to a movie since at least last October when Luke became ill. I can only remember going out with Sarah to dinner once since that time. We have so little time together now since with rare exception, one of us is with Luke at all time... I am sure that many of you understands how difficult it is to have a sick child...

Let's see. On Monday, we started Luke on one cracker (saltine without the salt) every four hours. He would munch on the crackers as if he had not seen food for months; it's true, he has not seen food, solid food, for a long while now. He would shove the whole cracker in his mouth and chew with his whole hand and fingers partially in his mouth... He enjoys the crackers so much... We continues him on liquids, pedialytes and lactaid milk alternating at 30 to 40cc/hr (30 cc is roughly 1 oz). His WBC=9.3, HgB=9.3, Plt=61K, Coags are normal.

Tuesday, Luke had a bone marrow biopsy done at about Noon. He was not allow any fluids since 6 AM of that morning. This is always torcher for a kid, taking away his food and fluids. Many wagon rides that morning... Luke was sedated with Nembutal and Demerol combination. It was not very effective as the bone marrow biopsy procedure was very painful for Luke physically and emotionally for his parents. Of course, we had to block out our emotion while helping to hold Luke for the procedure. Luke slept most of that afternoon and was quite sore that evening and the next day as well. For those of you that does not know what a bone marrow biopsy involves, it is about the same as using a cork-screw to remove a cork from a bottle of wine; with some anesthesia of course... Luke had a cracker or two and his fluid ration that evening.

Wednesday, Luke's WBC=9.8 (5-16), HgB=7.6 (10.5-14), Hct=22.4 (32-40), Plt=61k (150-450K). Because Luke's HgB and Hct has fallen so much, Luke was given a red blood cells transfusion. His magnesium was 1.5 (1.7-2.2) and this was also replaced. Dad worked on Wed. Mom advanced Luke to 2 crackers every four hours and continues his fluids.

Thursday: WBC=10.1, HgB=12.2, Hct=36.2, Plt=47K. After one unit of blood, Luke's HgB and Hct increased dramatically; maybe a little too much... Usually, Hct=3xHgB and with every unit of blood transfused, HgB would increased by one and Hct would increase by three. Here we have a much more increase than what would be expected. This lead me to question whether the number from the previous day was actually real or not; whether he needed the transfusion or not... Anyhow, his Plt (platelets) is now lower at 47K. His Pt/PTT/Fibrinogen are all normal. A repeat Plt level later in the day was essentially unchanged. Thursday night, last night, Luke had a new fever spike to 38.4C. Fever is never good in someone who is so immunosuppressed from steroids (currently 21mg Solumedrol twice a day) and post BMT. Blood cultures were done and Ceftazidime and Vancomycin antibiotics were started. No more crackers starting this day. I'll explain below...

Friday, today. Mom and Dad had switch schedule. Starting with today, Sarah was going to cover my clinic on Friday. I would be with Luke on Tuesday, Thursday, and Friday. Mom was to worry to work today and came early to be with us this morning. Luke had a chest x-ray this morning (essentially normal). I couldn't believe that the x-ray technition wanted me to leave the room. "It's better if he cry, we would get a better inspiratory film." Not with my son, I wore a shield as I alway do with Luke getting a CXR. I wanted to be sure that my son would not roll of the table since he was only being restrain at the legs and that he would cry only minimally with his dad at his side, holding up his arms for the film... Luke's WBC=7.5, HgB=12.1, Hct=35.5, Plt=45K. Only liquids today. We are cutting down to 20-30cc/hr and pedialytes only...

As you have read up to now, I have not mention the "S" word (Stools) a single time... Here it comes... We have noticed that Luke does OK with fluids alone, pedialytes and even with Lactaid milk. It appears that every time we introduce solid (crackers, white bread) that Luke's STOOLS becomes more frequent, diarrhea like, and even blood streaks. His abdomen get distended with gas and he is very uncomfortable and we think in pain from cramps and frequent stooling. His gut, because of what we believe to be gut GVHD, appears to be not able to handle the solids yet. I wonder if his gut is even ready for the lactaid milk that I mention earlier since we progress from liquid to solid, I believe, again too quickly... I think that we pushed Luke's gut too hard this past week. He may have had seeded his blood with bacteria from the gut... Just in, Sarah just called, it's a little after midnight, the blood is growing gram + cocci and Luke is having more fever tonight... Hmm, maybe it's Luke's left lower eye lid "stye" and now left upper eye lid stye that we have been battling this week that is the source of the infection. OR, maybe we introduced skin organism during the bone marrow biopsy procedure, or, maybe we introduce some bacteria into Luke's bloodstream via his catheters. We just change his dressing last night and it look clean. His temperature actually started yesterday afternoon when he went to 38.1 for about 10 minutes, before we did the bath and dressing change last night... Anyhow, Vancomycin should covers the majority of gram + cocci; except for the rare vanco resistance gram + cocci organism...

I am being quite details in some of my journal as I believe that: 1) It keeps everyone informed on Luke's progress 2) It actually contribute to his care. I have refer back to my journal on countless number of occasion. Many times, Luke's everchanging physicians would not know when an intervention was started and because of my journal, I can tell them exactly the date... I don't know how many volume of charts Luke is up to...

Well, it's late and I need to get some rest before my b-ball game tomorrow. Goodnight everyone. Please continues to pray for Luke and our family...

Friday - Sunday, May 31 - June 02, 2002

Day +74-76:

Aside from my basketball break on Saturday morning, I have been with Luke since Friday afternoon. I went to work on Friday morning as usual. Sarah paged me right after lunch and informed me that Luke's platelets count was only 1K (normal >150K). Sarah was very emotional on the phone. I had to cancell all my afternoon patients and rushed immediately to the hospital. Luke's platelets had dropped from the 50-60K range the previous day to 15K then to 1K. OR has it?? When I arrived at the hospital, Sarah had told me that the team thought that Luke had Thrombotic Thrombocytopenic Purpura (TTP). The attending and fellow (the two most senior members of the medical team) had came into the room and informed us that the peripheral smear look like TTP. TTP was something that I vaguely remember from residency. I remembered that it was a very bad condition to have with high morbidity and mortality rate and that the treatment was plasmapheresis (the exchange of your plasma). My memory of plasmapheresis was that it require the placement of a large catheter into a vein of the body, usually subclavian or internal jugular in adults and "hooking" you up to a big machine that does the plasmapheresis; a machine somewhat similar to a dialysis machine... I had to brace myself for what was about to happen to my Luke. A short while later, we were informed that a repeat platelet count show that it was actually 63K and not 1K; (WOW). The two blood samples that showed unusually low platelets had "clotted". Luke then had a "peripheral" blood draw, and not via the catheters, that show his platetes in the 60s' range... Wow, what a yoyo... I was relieve that Luke may NOT have had TTP and would not yet need plasmapharesis... The bottom line, Luke may have a mild case of TTP cause by the FK506 rejection medication. The FK506 was immediately discontinued in exchanged for "CellSept" (sp). Since Friday night, Luke has done well. His platelets is in the low 60's range. He is drinking his ration of lactaid milk and pedialytes every hour. Last night (Sat), Luke fell asleep without the need of any medicaiton. We were awoken by the nursing trying to draw blood from Luke's Hickman's. The line clotted and had to be fixed with TPA. Bottom line, we were up from 1-5am. By that time, Luke had to use some Benadryl for sleep. Today Luke was in a much better mood and smiles many times. Uncle Jack, aunt Pearl, and grandmom Ikuko came and watch Luke this afternoon while Sarah and I went out for a movie and a cup of coffee. The plan will be to try Luke on some small amount of solid tomorrow; one saltine cracker every four hours...

Friday, May 31, 2002 PT

Dear All: Lam and I have received some bad news today. It looks very likely that Luke's low platelets may be due to a drug reaction from one of the immunosuppressive drugs he is taking to prevent rejection, FK506 also called tacrolimus or prograf. He has what is called thrombotic thrombocytopenic purpura, a condition I don't know much about except that you have destruction of red blood cells (as you recall his red cell count has been slightly falling over time and was 8.9 today), consumption of platelets by small clots in different organs such as the brain and kidneys. This condition has a high morbidity and mortality rate. The FK506 was stopped today and another drug started in its place. Please pray to God and ask those you know to pray that God will grant Luke healing from this latest complication. Please also pray that the doctors will remain diligent in their pursuit of the best treatment plan. Please continue to pray for our strength and patience. Please help us to recognize when Luke is in pain, as we believe he is now, since he is crying often, and to treat it appropriately. I pray that God will continue to sustain us and that our faith will be unerring. We love our little boy so much.

Wednesday, May 29, 2002 at 9:40pm PT

Day +72: Mom and Luke had a pretty good nite. Thanks Pastor Mike for anointing Luke again and praying for healing again. You reminded us that we must continue to ask God for what we need and want which we will continue to do. Luke was very happy to start his pedialyte today at llam. He quickly grabbed that bottle from mom, gulped it down and threw the bottle on the floor which has been his usual habit today.Is this some macho kind of thing? He was again quite calm today, likely thanks to haldol every nite, but with less smiles than yesterday. Any smile from Luke is a gift these days. We took several wagon rides today with Auntie Pearl helping out, even with her severe tendonitis. Thanks Pearl. Packard Children's and Stanford hospital are interconnected by long corridors. There are plenty of windows to look outside at the beautiful sky and flowers as well as great art work on the walls. We try to swiftly pass the cherries and peaches pictures which Luke eyes with hunger. Luke sits like a little buddha in the wagon on top of pillows with his puffy cheeks from the steroids, his conductor hat and blue mask covering most of his face but his eyes. My mom calls him the "little prince". We can imagine that we are going to view his vast properties and to see his subjects. We can imagine he's a pioneer exploring vast new frontiers with his faithful horses, me and Pearl, pulling him. I was even thinking of a way to tie a rope around our waists to the iv poles and wagon to pull them more easily, but that might look a bit too weird. We get lots of stares from adults who usually smile at him. Kids with their noninhibited manners have a variety of responses when they see Luke: they may just stare with their mouths partly open and I can read their minds, "what's wrong with that kid", "how can I get my mom to pull me in a wagon like that". If a parent is with them we often hear "is that little boy sick?" "mommy, mommy look at that baby!" "he has a thomas train in his hand!". We pass the medical-surgical ICU with its crowds of people waiting for news on a loved one. We pass the robot ICU and I wonder what they're doing in there. Walking through the ground floor atrium feels like we're in a beautiful garden. When we return to our ward, 2N, we pass by the Pediatric ICU with parents usually crying outside. Today for the first time in a long while, when kids stared at him, Luke stared back. This is good since he's always loved kids and is showing that he's getting some of his old self back.

Luke had a few stools today. I won't go into too much detail. All I can say is that Lam and I will never look at stool the same way again. It's a big part of our lives now. Luke' white count remains normal, his hemoglobin is slightly decreased, and his platelets were 60K stable from yesterday. We were hoping they'd bump up but at least they're not dropping. We are anxious to see what tomorrow's platelets will be since we started fluids.

Thanks to Randy for the new Thomas. Thanks to Diane and Ron for the books--one of them, a thomas book, Luke almost always wants to have on his lap turning the pages back and forth.We are going to step up efforts to get him back to his regular walking which he resists but needs to do.

Thanks to Drs. Ngoc Nguyen, Minh Tam Nguyen, Nicole Thai, Khanh Tran, John Lien and wife, and Linda Ha for asking me out to a very nice lunch recently which I really enjoyed. Thanks to Leslie Griffith, a great nurse on 2North for her wonderful care. Thanks Pearl for all the clothes, toys, Thomas pillowcase, etc. you bought Luke. Sorry if I'm sometimes irritable.

Please continue to urge people to donate blood, platelets and bone marrow for all are very much needed. Little Nicole Howard in Seattle is in remission for CML but will ultimately need a transplant to survive and has no match to date. Also, Linda Lee, who is Korean, a 27 year old elementary school teacher in Seattle needs a donor as well.
Thanks Chris Martinez, our neighbor for your concern about Luke. When I ran into you while just about to leave for the hospital, I didn't know what to say when Sarah, your 6 year old and Luke's buddy kept asking "Where's Luke, where's Luke." I didn't mean to burst into tears. I hope that Luke will be home soon to play with them just like last summer, riding wagons, running through sprinklers, riding their little scooters like the good ol' days.

Tuesday, May 28, 2002 at 01:10 AM (CDT)

Day +71:

Last night Luke went to sleep after getting his benadryl and demerol as premedication for his ampho b medication. He slept fairly well and woke up at 2 am. We tried more phenergan, fentanyl and then eventually haldol 0.125mg at about 4:30am. Luke then slept until about 8am. Luke had a stool at 2:30am and none until about 6:30pm tonight. He had another stool right before I left the hospital tonight. Stools are mucus like, yellow to brown to green with occational streak of bright red blood. The green/yellow/brown material is guaiac negative (ie no digested blood). The red blood is obviously red blood. Luke's stool frequency and volume has definately decreased. Two of the above stools were only ~10 grams each. Now, for the good news of the day, Luke's platelets is today 61K, an increase from 52K yesterday. His WBC is normal and HgB is mildly decrease...

Today was a good day for Luke. He smiles many times. He was comfortable watching TV and riding in his wagon. It is like night and day when compare to a few days ago... The plan will be to "bite the bullet" and start Luke on some pedialytes tomorrow. We plan on "starting low and go slow." Tonight Luke was switch from iv ampho b to oral fluconazole as fungal prophylaxis. Please continue to pray for Luke that his gut will be able to tolerate the liquids and eventually solid food. We hope that his platelets will continue to rise and that we do not return to GVHD of the gut. I think that this last week was another major bump on the road for Luke and his parents...

Thank you Leslie S. for your advice on stool color yesterday. Thank you Manjula for our convesation today. You are a very wise person... Thank you aunt Pearl for all of your help today; especially for lending me your ears and your insightful advice. Thank you "mama" for being such a wonder mom and having two such wonderful and beautiful childrens. Hang in there, it's a rough road... These roses are for you...

Monday, May 27, 2002 Pacific Time

Day +70: Luke was smiling when I arrived at the hospital today. I could see that he was doing even better than yesterday since his toys were strewn everywhere which meant he was playing again. He was much more calm this morning and his level of agitation was minimal in the am but started to increase in the late afternoon. It was unclear if he was having pain from cramping of the abdomen or was hungry or again having medication side effects. We asked for some fentanyl just in case. He had several more stools today and we may continue the no eating/drinking policy for another 24-48 hours. As stated previously, we are doing this on our own, not per our team's advice. We are afraid of recurrence of the previous GVHD which started in a similar pattern and was life threatening. It is very difficult to watch Luke begging and crying for food but the alternative could be much worse. Luke's platelet count is 52K today holding stable since yesterday. His hemoglobin is l0K and white count normal. Luke's Aunt Ha left today. She was a wonderful help to us.Thanks for listening to my venting and for uplifting our spirits and Luke's.Thanks for helping us to get through the last several days which were quite horrific. Imagine watching your child constantly wimpering, crying, trying to throw himself off the bed. I've never seen him so agitated. We repeatedly asked for haldol and were told to try a hundred other drugs first. Of course, we'd been through this whole thing about 3-4 weeks ago and had had child psychiatry consult and recommend prn haldol for agitation which worked for Luke wonderfully without significant side effects. We found ourselves starting at ground zero again trying to convince our new team of the need for haldol. I lost it one day when Aunt Ha and I were there with Luke who was inconsolable and screaming and crying nonstop. After trying benadryl and phenergan without relief, I asked the resident for haldol. But he wanted to give the benadryl and phenergan "more time to take effect". I asked the nurse to send him in. I then asked that he come to my side of the bed where Luke was screaming. I then told him that if he didn't feel Luke needed haldol right now, he could spend a half hour with him and see. I then walked out of the room. The haldol was quickly ordered. I don't like to lose my temper and feel that we shouldn't have to get to this point to make a point but it seems to happen over and over. I can only say that I pray for God to give our doctors ongoing wisdom and empathy. We are doing what we believe is best for our son and which has already been proven with experience. Our hearts have been broken over and over again. Sometimes it's hard to believe we can still go on. Just when you think everything is fine,something else occurs. We are emotionally and physically worn down.Luke has endured more suffering than all the people I know combined. Please forgive us if sometimes we don't journal. Reliving the horror of the day can sometimes be too much and we need to put up our defenses to keep on going and caring for our Luke.

Thanks again Pastor Mike. I didn't mention the l4 day fast he did several weeks ago when Luke was not allowed to eat. He stopped when Luke began eating. Thanks for the anointment of Luke and prayer for healing. Aunt Pearl is here now and we thank her for her many visits and time spent away from her home and husband in Chicago. Thanks to the stranger who approached me in the hall as Lam's dad and I were pulling Luke with his huge IV pole with 3 pumps and he in his wagon. She called out "Mrs. Do, Mrs. Do" I turned around and she handed me a get well balloon for Luke and a small pot of yellow roses. She said "I'm from blah blah blah blah and these are for you". Me in my semicomatose state didn't pick up the name of the organization but blurted out my thanks. Thanks whoever you are. Thanks to Sue Haynes Douglas and her wonderful family and others at Heritage Baptist who continue to pray for Luke. Please, all of you, continue to pray for Luke's healing. Pray that he will be relieved of his agitation and that the gut GVHD will heal so that he can begin to eat again. Pray for the leukemia not to relapse. Please also pray for Lam and I to stay close to God, to stay physically and emotionally strong. I have already had 2 colds and the stomach flu which has meant more hospital time for Lam. Thank you Lam for being a great husband. Your strength and your love for Luke are played out everyday in your actions. Please pray for Joan and Don whose l8 year old son with Fanconi's anemia and leukemia has had severe complications post bone marrow transplant. Pray for his healing. Thanks again to all our staff at Evergreen doctors for their encouraging messages on the website and at work.Thanks to Son and Thanh for their generous donation. God continue to bless little Vincent Luu and his parents who have completed the l year chemotherapy for ALL. He was hospitalized this weekend for an infection but is doing very well in general.

We are continuing in our fight against JMML. The war is long and there have been many battles. God remains on our side. He will stand by the growing JMML team of fighters who are winning the fight. We want to thank their parents for such support. I pray that we will all get through this together.

Sunday, May 26, 2002 at 01:01 AM (CDT)

Day +69:

Last night Sarah was with Luke. She reported that he was much more comfortable and slept much better with the haldol. I came to the hospital by 10 o'clock this morning. Luke and mom was still asleep. Luke had 5 stools in the previous 24 hours. Most were yellow to green mucus, low volume diarrhea. One thing that is new is that Luke's stools has a horrific odor. Sarah describe it as being "sulfur" like. To me, it smell like rotting tissues. The stools appear to be less green in color. This morning, I noted that one of the stool had several spots of bright red blood. Many scary thoughts pop into my head... I latter discover that the skin surrounding Luke's anus is very raw and peeling. Luke had another stool latter without the red blood. I now think that the red blood probably came from the raw skin. It looks very painful... This came about probably because of the frequent diarrhea. Luke was given fentanyl for control of pain today. I took Luke on a few wagon rides this morning. Luke's WBC is 6.9 (normal), HgB 10.3 (slightly low), and Platelets is 56K (stable from yesterday). His electrolytes are unremarkable. Ast is 60, Alt is 161. These 2 test represents liver enzymes and suggest mild inflammation of Luke's liver. The Ast/Alt has been in this range for quite a while... My thoughts are that Luke had a flare of his gut GVHD and that because we caught it on time by restarting iv steroids and decreasing and stopping oral intake that Luke is beginning to respond. The plan is to continue the course and that he might get another endsoscopy to see if there is gut GVHD. The monoclonal antibody is always an option...

Because I didn't get my exercise yesterday, I decided to take a break this afternoon. While mom and aunt Ha was with Luke, I got together with my long time friend from med school (Gupta) and we went out to watch Star War and had a bite to eat... It was a good break. Thanks Gupta... When I got back to the hospital, mom and aunt was crusing the hospital with Luke. I noted several of Thomas's train on the bed. I knew that Luke must be feeling better if he was playing with his train. Yep, mom reported that he was better... Tonight, pastor Mike came by and annoint Luke with oil and pray for him to get better. Thank you pastor Mike... My sister Ha is leaving for the East coast tomorrow. She has been such a great help with Luke. In the last several days with Luke's behavior out of control, at times it takes 3 of us to change his diaper. With both mom and dad and aunt here, Luke and his parent is much better care for. We can take turn taking naps, eating, and getting breaks. A big THANKS sis... Aunt Pearl is coming in tonight from Chicago area to help out for about a week... We are so lucky to have such wonderful supports from our family and friends... Goodnight.

Tuesday May 21 - Saturday May 25, 2002 at 01:17 AM (CDT)

Day +64-68:

My previous journal was from Monday. On Tuesday and Wednesday, I was just too plain tired to add any entry. On Thursday, I tried to do a journal, but caringbridge server was down. On Friday, last night, I was with Luke at the hospital and didn't sleep a wink, so had no time to even turn on the conputer. Tonight is Saturday night and I finally will update you, reader of this journal, all the events that has occurred since Monday. Let see, where should I begin. Saturday, as you know, is my favorite day of the week since I usually play basketball. Today was an exception, I did not get to play ball. Luke and I had such a bad night that I knew today would be hell for everyone, so I decided to skip b-ball for this week... But, I am getting ahead of myself, let's back up to Monday and Tuesday (please refer to my previous entry). On Monday, Luke was started on some solids (saltine crackers) and continue on his ration of liquids. His liquids was gradually increase to as much as 50cc/hr, if I remeber correctly. From my last journal entry, although Luke's behavior was very good, I was very worry about his platelets dropping to 84K. The team explanation was that it was probably a spurious value. Yeah, right! At this point in time, the team was only going to check Luke's CBC on Monday and Thursday. On Tuesday, Luke had about 5 loose stools, yellow liquids. I asked for a repeat CBC as I was worry that with the increase in stool frequency and the drop in platelets that Luke was having a recurrence of his gut GVHD. The repeat CBC show a slightly low WBC, HgB, and a platelet of 102K. Well, I felt a little bit better that Luke's platelets has not drop lower. Luke was given more saltine crackers and liquids (pedialyte and ?lactaid milk) on Tuesday. On Thursday, Luke's platelets had drop to the 70's range. On Friday, it was in the 50's and today, Saturday, it was "stable" at 56K. During this whole week, the team advice to us has always been to advance his diet to more solids and more volume of liquids. If I remeber correctly, on Tuesday, Luke had saltine crackers and some white bread as well. I was very very nervous of this advice as his platelets was dropping and his stool frequency was increasing. Some of the stools were greenish in color, mostly watery diarrhea, with some mucus; just like it looked when the black stool started to change to green stool after Luke's GVHD was inproving. This scare me greatly. If you remember, we almost lost Luke at that time... What the team was recommending did not make much sense to me as a physician... My gut instinct as a physician and my paternal instinct as a father tells me that something very serious was happening, probably a recurrence of gut GVHD... I think it was Thursday when I found out that his platelets had continue a downward trend from 84K to the 70's range that I stopped all solids and decrease this liquid intake. Luke was correctly switch from oral to iv steroids as he might not have been absorbing the oral steroid via his gut. By stopping Luke's solid intake, we were going against the team advice... If your doctors was telling you to hold your son in your arm and jump off a cliff, would you do it?? I bet that you would NOT... Can doctors give bad advice? Damm yes... Remeber way back, before any of this started, when Luke was engrafting and he was getting over his skin GVHD, and he started to have frequent, small volume green stools and diarrhea. We kept asking the team is this gut GVHD. The team answer was always that they did not think so as the diarrhea was not enough volume... This was the same answer for about a week. Finally, one of the attending that I respect highly, felt that the diarrhea was from gut GVHD. Luke was scoped from above and below and confirm the diagnosis of sever gut GVHD. Then it became large volume bloody diarrhea. We were changing diapers every 30 to 60 minutes. Our poor son was spiralling down the draim as the cascade of inflammatory response, the GVHD, was so sever that he was on the brink of going to heaven. Thank God for the mega-dose of steroids, and the prayers of many many people, that help rescue Luke from the cold and dark abyss... The team was just plain wrong on that occasion... On this occasion, if what they recommend does not make logical sense to us, we were not going to follow their recommendation... On Friday, a new attending came on service. You would not believe it, but the attending (the head of the team and most experience physician member of the team) changes weekly here at this hospital. Before you can learn their name, a new one comes on board... This system stinks... Since we have been in the hospital for almost 3 months, we are beginning to know all of the attendings... Sorry about the ramble, it's late... Let's see, that take us to Friday... Luke's platelets was about the same in the 70's range. He was on 30-40cc of pedialytes per hour and iv steroids. I came to take over for mom on friday night after work. Luke behavior was SO bad. He kept wanting more crackers to eat or more liquids to drink all through the night. I had limit him to 30-40cc/hr of fluids and no crackers... He had other ideas... It's the combination of iv steroids, accutane, and just restarting of solids, only to have it taken away again, not to mention being in a prison and getting torcher and abuse for almost 3 months is just a little too much for Luke to handle. He is so wild and crazy, ballistic, just like he was before on high dose steroids (remember "vitamin H" or "happy juice"). Things only got MUCH worse when I stop Luke fluid intake at 5am on this Saturday morning. His platelets was on 56K this morning. Last night, I had to take Luke on wagon rides all through the night (12, 1, 3, 5, etc.). I had never had to take Luke on wagon rides in the middle of the night. He was always asleep. Last night he was sooooo restless. We tried benadryl and demerol pre-med for ampho b, phenergan, fentanyl, more benadryl, etc... Why not give him more vitamin H (haldol)?? We wanted to, but the team felt uncomfortable with giving an anti-psychotic medication... DUH!! I guess they haven't review Luke's chart very well. They need to read the child psychiatrist note recommending haldol... Finally, at 5 am, after being up all night and dealing with Luke, I told the nurse that if the physician thinks that he knows my son better than I do that he need to come down and talk to me... Luke was given a dose of haldol and he went to sleep after about another 45 minutes of fussing. This dose was 0.06mg or roughly 50% of 50% of the original dose of 0.25mg (where he slept for a whole day...) I had asked for a second dose of 0.06mg but it was held until later because Luke was falling asleep already... Why are doctors so damm paternalistic? Patients need to be informed of the risk and benefit of treatments options and the informed patients can decided for themself what is best for themself or their son... Doctors need to remember that they are not our parents. We don't want them to make the decision for us unless we aske that of them. We want them to inform us of the different options for treatment and the risk and benefits of the treatemnt. We will then decide what is best for us... Wow, what a mouth full...

Thank you sister Ha for coming from the east cost and helping out so much today. Tomorrow night, aunt Pearl is coming from the Chicago area to help...

Goodnight...

Sunday & Monday, at 01:26 AM (CDT)

Day +62 & 63:

Not much to report from Sunday. While mom was at church, dad was with Luke. Grandma Ikuko and Dung came to help with Luke. When mom came to the hospital, I had a break and went to catch Spider Man with Vinh and Anna. This has to be the first movie that I have seen since Luke became ill last September. I don't even remember what the last movie was about... Mom was with Luke Sunday night and Monday through the day. Grandpa Do came to help with Luke. I went to work today. Brought unfinish work to the hosptial and tonight telecommuted for 1.5 hrs while Luke was asleep. Luke behavior was much better today as reported by grandpa. Luke was started back on some solids today. He was given saltine crackers. Grandpa said that he had about 9 throughout the day. I gave him one tonight. I am so happy to see my son eating again. He can enjoy a cracker so much... His fluids ration is the same. We have switch from iv steroid to an oral form. Luke's lab result was a little worrysome for me today. His WBC is normal at 5.2. His Hgb is slightly low at 9.7. Most worrysome for me is that his platelets is now only 84K. It was in the normal range in the past. Hopefully this was an anomaly, a laboratory error... We will see with the next CBC...

Goodnight Everyone. Thank you for your continual prayers for Luke and our family. Thank you for signing our guest book..

Saturday, May 18, 2002 at 01:04 AM (CDT)

Day +61:

Luke woke up multiple times last night to drink his ration of fluids. Not so good for dad's sleep. He had 2 stools that was brown/yellow in color and one that was greenish and cottage cheese like... I am sorry that so much of Luke's journal deals with stools; but, it's significant for gut GVHD. This morning, grandpa and Sarah came to relieve me for my exercise. B-ball was good as usual... Grandpa and mom had a tough time with Luke toward noon. He cried for about 10-15 minutes. Mom thought that Luke was having pain and Luke received a dose of pain medication. This afternoon, Luke was better behave. We went for a few wagon rides. He would fall asleep in the wagon. Dad would circulate around the unit until he is asleep. This is when I would park the wagon right in front of the kitchen to heat up my dinner. I would find a seat somewhere on the unit and have my dinner while Luke is asleep. I also enjoyed the newspaper this way. Tonight, we watch movie and I am now doing the journal while Luke is asleep. Luke drank lactaid milk and pedialytes today. This is his current diet...

Friday, May 17, 2002 at 11:35 PM (CDT)

Day +60:

Mom reported that Luke had three stools last night. You know what that means; Luke is again restricted to liquids only. He can have only pedialyte, pediasure, or lactaid milk. He likes best pedialyte or lactaid milk, not the pediasure. No more crackers or white bread... Well, he had 5 saltine crackers and about one slice of bread yesterday. It was good while it lasted. I am sure that we will resume solids soon... Luke had a chest x-ray this afternoon. We are concern that he still have this intermittent cough. We think that he may have pick up another virus. No fever or anything like that, thank God... Tonight, Luke was again "hep-lock". His catheters was flush with a dilute amount of heparin to prevent clotting. The iv pole and lines were detached and we were free for a couple of hours. We were able to walk mom and Vinh down to the garage to say goodbye. Luke took a few more steps tonight. I am trying to get him to stand and walk more. He prefers to ride in the wagon or have daddy carry him... He is so spoiled.

Thanks cousin Dung for taking my dad to the hospital so that he can help Sarah with Luke on M,W,F; even when you did not feel that well today... We greatly appreciate your help...

Thursday, May 16, 2002 at 12:50 AM (CDT)

Day +59:

Luke had two stools on my shift. One from last night and one from this morning. Both were moderate amount of green pasty stools. This made me nervous; but, he hasn't had a bm in 3 days. The team was not nervous about this... I continue to try to give Luke the Pediasure (half and full strength). Guess what? This morning, he vomited about 175 ml of the mixture. So much for Pediasure. He would only takes Pedialytes. After consulting with the nutritionist, it was decided to start Luke on lactaid milk and low residual carbohydrates type of food. Luke ate about 5 saltine crackers today and one slice of white bread. He was so cute muching on the crackers. He drank the lactaid milk without much complaint. Luke was very happy to be able to eat something again. He had not eaten in about two months. Most of the day was spent riding in the wagon wearing a mask and a train conductor's hat. He always has his favorite, stripes pillow with him on these rides. Thank you Aunt Lich for making 8 extra pillow cases from a sheet with the same blue, stripes that Luke love. (I will try to get pictures soon.) With Luke wearing the conductor's hat given to him by Dr. Dahl for his second birthday, you cannot see his bald head and he looks just like a normal kid. Tonight, he look even more normal as we were able to hep-lock his catheters and he had no tubbings or iv pole attach. We all went down to the atrium and gardens and watch the toy trains. Today was a good day. Last night was a bad night. Luke was pre-medicated early for his ampho b and was asleep when I came to relieve Sarah. He woke up at about eleven and it seem like hourly after that until about 7 am. On the hour, he would get his 50 ml of fluid. I couldn't believe that he wouldn't sleep. Today, he barely took any nap. It may be because he is now completely off the fentanyl pain medication and still on 23mg solu-medrol twice a day. The plan will be to continue to advance his diet, convert iv to oral medications, and increase his activities level (like standing and walking).

Thanks Dung for your visit today.

Goodnight everyone.

Wednesday, May 15, 2002 at 10:06 PM (CDT)

Day +58:

I finally had a night of un-interrupted sleep at home in my own bed. Didn't get to bed until around midnight though. Had to answer all the e-mail, had to do the journal, had to read journals from others childrens with JMML, etc., etc. Saw patients in the office today. Boy, am I behind in my paper work... It's endless... I brought a bunch of the paper work with me to the hospital so that I can work while Luke is asleep. Had dinner at home and held Christina for a brief period. I am now at the hospital with Luke. Sarah informed me that Luke was advance to half strength Pediasure today. He was very happy initally, but realize that it wasn't his usual whole milk. He rejected the Pediasure (Ensure like for childrens). He drank his Pedialyte (water like with some electrolytes). Grandpa reported that when he left to go home, Luke was actually clapping and very happy. Luke is now asleep under the influence of pre-medication for his ampho b. He looks so peaceful asleep...

Thank you for reading the journal and following Luke's progress and signing our guest book. Goodnight.

Tuesday, May 14, 2002 at 01:18 AM (CDT)

Day +57:

Wow, I get to sleep in my own bed at home tonight. HORRAY!! I have had spent one full week in the hospital with Luke with the exception of my Saturday morning off to play basketball. Mom has been under-the-weather this past week and had to be separated from her beloved son. Of course, Sarah had to see all of my patients in the office so that I can take care of Luke. When one child is sick, it takes a full time parent to care for the child. What is it like spending 24 hrs a day for one week with Luke? In one word, TOUGH... At times, especially when he is having a temper-tantrum, it can be very trying. At other times, it is so pleasant to see him smile that it makes it all worth it. You should have seen him tonight. When mom came, and with dad in view, Luke was so happy to see the two of us in the same room, he broke out in so many smiles. He was sooooo happy. We have not seen Luke so happy in at least two months...

Luke continues on his 50ml fluids per hour diet. Steroid is being decrease another 20% starting tonight. Once we get down to about 3mg/kg/day, the plan will be to decrease the dose by 10%/week. The next step in his diet will be to re-introduce some substinance to his fluid, probably half strength Pediasure. We continue to make "baby steps" improvement; but, we are heading in the right direction. It is as if we are a submarine that was descending into the cold and dark abyss. At any moment, the submarine could have exploded. This was when we were battling Luke's GVHD and thought we were going to loose him. Now, the submarine is ascending from the deep and we can see rays of light shinning down from above. We can almost see the surface of the ocean...

Monday, May 13, 2002 at 02:02 AM (CDT)

Day +56:

Not much to report except that Luke's fluid intake is increasing to 50ml/hr. We continue our many wagon rides each day. Tonight he had two episodes of temper-tantrum. Each of the tantrum occur after taking his ration of fluids. He just want more to drink. Because he is getting stronger, his tantrum is more severe... Luke is now on a lower dose of ampho b, prophylatic dose instead of full dose. His pain meds continue to be taper down. He receive his montly penicillin shot today into the thigh. This is to decrease risk of infection since he no longer has a spleen. He receive his weekly Bactrim with Leucovorin today. We will be resuming Accutane at day +60 for a total of one year.

Sunday, May 12, 2002 at 12:43 AM (CDT)

Day +55:

Happy Mother's Day!!

Luke had a good night. This morning, grandma Ikuko came to help. Later Kimmey and Steve came for a visit. Vinh and Anna also came by. It was nice to have all the help. I think everyone enjoy taking Luke around the hospital for his wagon rides. Mom came in the afternoon and we spent a quite rest of the day. Sorry Mom, we couldn't do more for Mother's Day; but, Luke is getting better and that's the best Mother's Day gift that any mom can wish for... Today, Luke was more interested in his toys and he actually smile a few times, especially when we took his pictures or when we tease him. For a very long time, Luke is more his usual self...

Luke continues on his 40ml of fluids per hour. He had a stool this morning at about 7 am. For the first time, it look more brown than green. This afternoon, he had another similar stool. Luke's steroid dose is being decrease by another 20% starting tonight. He is also finishing his Unasyn for his possible sinus infection that was seen on the last total body CT-scan.

Thank you grandma Ikuko for your help and the food. Thank you Kimmey and Steve for your visit and the wonderful bread. Thank you Vinh and Anna for the lunch and movie. Lastly, thank you mom for being a great mom... Happy Mother's Day!!

Saturday, May 11, 2002 at 12:01 AM (CDT)

Day +54:

This morning, grandpa Do and mom came to relieve dad so that he could go and get his batteries re-charge. Mom was still under the weather and had to stay outside of the room. Grandpa said that Luke only complain a little bit when I left. Grandpa was instructed to give Luke 30ml each hour. At noon, Luke wouldn't stop crying because he wanted more to drink. Mom was called in and the two of them took Luke for his wagon ride around the hospital... Dad had a great time playing basketball. Won some and lost some. I finally got a chance to go home and saw Christina for about 15 minutes. I haven't seen her since Monday. I wish so much that I could spend more time with you my Christina... Luke was well behave the rest of the day. We went for many wagon rides. We are now increasing Luke's fluids to 40ml per hour...

Thank you Kim-Thoa and Nhi for playing with Christina today. Thank you grandpa Do and Mom for watching Luke this morning. Lastly, a big HAPPY MOTHER'S DAY to all the mothers out there, especially Luke's mom and grandmothers.

Friday, May 10, 2002 at 11:30 PM (CDT)

Happy, Happy, Happy, Happy...

Day +53:

Let see, we have been here now for 60 days, two months; but, who's counting... I'm so use to being here that when given the opportunity, I rather be here with Luke than working in the office. I just need my occasional break, like playing b-ball tomorrow morning, surfing the web, or reading the newspaper... Luke had one stool this morning that was again green in color. No diarrhea. Mimi came to help out with Luke today. (THANKS MIMI!!) We continue Luke's fluid intake at 1 oz per hour. He always wants more. It seem that each oz would hold him for about 5 to 10 minutes. He would then beg for more. We would then take him for his wagon ride around the hospital. This morning, before Mimi came, I took him for three walks. One arm carrying him and the other arm pushing his iv pole. Every so often (quite often actually), I would switch arm as Luke is almost 29 pounds. When Mimi came, one of us would pull the wagon and the other would push the iv pole. I lost count of how may times we took Luke for his wagon rides. This afternoon, I was able to secure the wagon handle to the iv pole using a belt and was able to navigate Luke around the hospital by myself. From now on, Luke and I will be seen cruising the hospital on an hourly basis... I think that all iv poles in children's hospital should come with attachments for wagon handles... We are lucky, there are children's hospitals that don't have/allow wagons... Tonight, Luke had a prolonged "temper-tantrum". He finally fell asleep after Benadryl and Demerol pre-medications for his ampho b. He also had a stool tonight. This time is was again green, but more pasty in consistency...

Luke continue to be improving gradually. His pain meds is being decrease more today. His steroid dose is being decrease by another 20% starting tonight (34mg). He continues on his ampho b, acyclovir, and Unasyn. We are checking his count only two times a week now. His electrolytes are stable.

Thursday, May 09, 2002 at 12:09 AM (CDT)

Day +52:

GOOD NEWS TODAY!!! Luke's bone marrow biopsy result show 99-100% donor cells. This means that as far as we can tell, Luke's bone marrow is all new, from the stem cells from the donor, and not from his old stem cells. As far as we can tell, there is no leukemia currently in Luke's bone marrow. Only with time and repeated testing can we tell if Luke has been cure of his leukemia. We pray to God that this is a cure... Statistically, there is a 40 to 50% chance of recurrence... The second good news was that we were able to start giving Luke some liquids. You should see him. He just wants more and more... Currently, we are allow to give him 1 oz an hour while awake.

Thank you grandma Do for the daily food and grandpa Do for helping with Luke, especially pulling him around the hospital...

Goodnight Everyone and thank you so much for all your prayers and support for Luke and our families...

Wednesday, May 08, 2002 at 09:59 PM (CDT)

Day +51:

Luke slept well last night. He had a stool at 4am; but unfortunately, the nursing assistant changed Luke and took the diaper away. This morning, she told me that it had a moderate amount of brown stool in it. Grandma Ikuko came to help today. Everytime Luke would get craving for food and water and starts to cry, we would take him out of the room and put him in a wagon and pull him all around the hospital. This really distracts him. Immediately after sitting in the wagon, Luke would stop crying and start to look around (I think he is searching for food). Once we starts to move, Luke would get interested in other things and he would sit so quitely in the wagon. We are so happy that this simple thing Luke actually enjoy. We takes so much things for granted... Luke continues on his 48 hrs of nothing by mouth. He was more calm today. I think that we only had to walk him about four or five times. We are going down another 20% on his steroid dose tonight, now at 46mg of solu-medrol twice a day. His pain medication is also being reduce slowly. We look forward to being able to give Luke something to drink tomorrow...

Mom was under the weather yesterday. Because we do not want to take any chances, mom had to see all of dad's patients today. It's a good thing that she was able to cover my practice today so that I could be with Luke to minimize any potential exposure. We are lucky that because of our commom profession and that we are in private practice, we have more flexible schedules and can cross cover for each other...

Tuesday, May 07, 2002 at 10:50 PM (CDT)

Day +50:

Last night, Luke had 2 small stools. At 4am, Luke receive his first increase of fluid to 20ml/hr. He had 40ml of Pedialyte. At 7am this morning, Luke had a moderate green mucus stool. We held any additional fluids and Luke will not have anything else by mouth for the next 48 hours. The team feels that if liquid causes Luke to have loose stools then his gut is not ready for oral intake. Luke’s counts continue to do well. His WBC is 11.8, HgB 10.3, Plts 203. We are decreasing Luke’s pain medication just slightly today. Not much else to report except that it continues to be painful to watch Luke starve. Technically, he is not starving since he is getting IV feeding with TPN; but, he does not know this. Luke would grab my hand and point it toward the door for me to go get him something to eat or drink. He would whimper, cry and moan and give me such a pitiful and helpless look. Sometimes, he would make his body stiff and even try to throw himself off the bed. He sometimes kicks me out of bed. In the ends, he eventually gives up...

Thank you Vinh for the wonderful lunch and thank you grandpa for helping with Luke today.

Monday, May 06, 2002 at 12:25 AM (CDT)

Day +49:

Sarah was with Luke last night. She reported that at 11pm and 1am that she had to take Luke for a wagon ride around the floor with the help of the resident physician. Thank you, that was beyond the call of duty. Luke had no stool last night or today. He is tolerating his 2 teaspoon per hour of liquid. Luke had one scant green to brown stool tonight. He is now allow 20ml per hour starting tonight, a doubling of his intake. This will probably not starts until the morning since he is now asleep. His dose of steroid is also being decrease by another 20% tonight. Luke's counts are again "stable"; though, I have not seen them myself yet. We are very happy that Luke is making some slow progress...

I was in the office today seeing patients. I must say that because of Luke's illness, I am much more aware of issues dealing with leukemia and bone marrow transplant and would try to convey these information to my patients. A mother and a father-to-be had come in to re-confirm a positive home urine pregnancy test. I congradulated them and inform them of the potential of saving umbilical cord blood during the delivery. They are now informed and will decide for themself what they want to do with their future baby umbilical cord blood. They can bank it for their own private use (~$1500 one time set up fee, and ~$100 annual storage fee), donate it to some cord blood bank for public use, or do nothing with it and it will go in the trash. While we are on this topic, I would like to mention something about Pre-implantation Genetic Diagnosis (PGD). If you and your spouse are both carrier of the same genetic disorder, there is a 25% chance that your child will have the disease and a 50% chance that your child will be a carrier (this is assuming that the disease is "homozygous recessive"). The technology is now available that, via in-vitro fertilization (IVF) and PGD, you can select an embryo that will assure that your child will not have the disorder or even be a carrier of the disease. When Luke became ill with Leukemia and we knew that he needed a stem cells transplant and that his chance of finding a donor was very small, we had consider having another child (in addition to Christina). Because the chance of another child being a perfect match for Luke was only 25%, we research the topic and discover that via PGD and IVF, we could have selected an embryo with a perfect match for Luke. We would collect the umbilical cord blood at the time of the delivery and Luke would have a perfect matched stem cells transplant. We did not choose this rout because our chance of success with IVF was only in the single digit and we did not have enough time. If you are interested in PGD, I would look up UCSF IVF program or the Reproductive Genetic Institute in Chicago... I hope that some of you find this info useful...

Goodnight.

Saturday & Sunday, May 04 & 05, 2002 at 12:32 AM (CDT)

Day +47 & 48:

Saturday morning I had my usual break, playing basketball. I was more fatigue than usual and the ache in my knees was more pronounced. I did not bring my "A" game that morning. At one point during the morning, I ponder if I should not have taken a week off from playing. Most of the guys that I play with are in their mid to late 20's. They don't know it yet, but after they pass 30, it's all down hill... The exercise did help me feel better afterward and gave me more patience to take care of Luke. Just imagine a 2 year old who has not eaten in about 2 weeks who is on steroids and trap in a box... I guess we are lucky that he cannot speak. I can only imagine what profanity or violence would come out if he was speaking or was older... As expected, Luke was not allow to have anything by mouth on Saturday. He had 2 stools since yesterday. One at 4 am and one at 8 am. Both were green in color and mucus like in consistency. When I changed him at 4 am, he decided to stay awake until about 11 am. It reminded me of residency days when you are called for that 4 am admission and then had to start "rounding" on your inpatient. Being "post-call" was never fun because you are so often sleep deprived. The good news for today is that Luke was allow to restart taking some liquids. He is only allow 10ml per hour while awake. This is roughly 2 teaspoons. I tried giving him 30ml and making him wait 3 hours before he could have anymore fluids. Three hours was to long an interval. I did not wanted to give him 2 teaspoons every 1 hour as this would be to much torcher. We have decided that it's best to give him 20ml every 2 hours. He does not seem to notice the difference between 4 or 6 teaspoons as he suck the whole thing down in about 15 seconds. The other good news is that we are allow to take Luke off the floor. Especially after one of the above "tease," we would put on his face mask, his "Bob-the-Builder" slippers (thanks Pearl), and put him in a wagon and pull him all around the hospital. This seem to help distract him from the hunger...

Luke's counts are all essentially normal this last few days.

Thanks Gupta for your visit today.

We spoke to our physicians team about having volunteers to help with Luke. The team will discuss the issue with the bone marrow attending physician and get back to us... Basically, they still want Luke to have minimal exposure to people. The less the better. They don't even want Luke's sister (Christina Hope Do) to come and visit as she is "probably colonized with viruses." The team, rightfully so, don't want to see Luke with any further setback from acquiring another virus and restarting GVHD. For people who would like to volunteer, probably it's best if you could help baby sit Christina. This would give one of my parent a break. One of my folk would be with Christina at all time. This could also free up one of my parent to help us with Luke at the hospital. Saturday afternoon is a good time for those of you who would like to come by the hospital and go out with Sarah. Sunday afternoon is a good time for me to get a few hours break from Luke. If you are interested, please check the calendar link above and e-mail me with the date and time that you would like to volunteer with baby-sitting Christian in San Jose or come by the hospital to go for a short outing...

Thank you and goodnight.

Friday, May 03, 2002 at 01:47 AM (CDT)

Day +46:

The first thing that I noted upon waking up this morning was that Luke's diaper was wet and that he had a moderate green stool. Mom came to relieve me at 6am so that I could attend a medical conference in SF. I took Cal-Train for the first time. I am surprise that not more people take Cal-Train... The conferences was very informative and I learned some great materials. I also ran into some classmates and colleagues. It was very pleasant seeing and chatting with them...

Mom gave Luke 4oz of Pedialyte this morning... The team made Luke NPO (nothing by mouth) after that. Luke had another green stool this afternoon- moderate amount. Tonight, Luke had a moderate to large green stool, somewhat diarrhea like. I guess that he will not get anything by mouth tomorrow either... The team made Luke NPO today to rest the gut more.

I hate to admit it; but, both Sarah and I am beginning to feel somewhat fatigue. We have been in the hospital now for a continuous 53 days and it's finally catching up to us. Eventhough I get my "batteries recharged" every saturday morning, I don't think that my batteries are holding a charge as long. For those of you who reads this journal and would like to help, these are some of the areas that we need help in: someone to help us out either at home (helping my parent(s) with Christina) or at the hospital (helping one of us with Luke). Basically, all of us need a little respite care or "time out." It's a must that if you are sick or been around anyone sick, you will be most helpful by NOT helping. Luke's counts are now good and he is no longer neutropenic. His risk of infection is now less than before; though, his immune system is still very fragile. We realize that this is quite an impersonal way of asking for help; but, it's probably the best way as we don't have to make so many phone calls...

Thank You ALL and Goodnight...

Thursday, May 02, 2002 at 10:02 PM (CDT)

Day +45:

No significant event overnight. No stool either. Luke was started on liquids today. He received 50ml (almost 2 Oz)of 50% diluted grape juice. He suck up the fluids in what appear to be one breath. He begged for more; but, I could not give him anymore. Two hours later, another 50ml of the same. Again, he wanted more. Again, he cry and beg for more... I had to remind myself that if I give him too much, it would be a bad thing. His stomach and intestine has not seen liquids or food for I don't know how long. The physician then felt that 50ml every 2 to 3 hours was too much. It was recommended that I give him 10ml (2 teaspoon) every one hour. Why torcher him every one hour? I decided that 20ml every two hours is torcher enough for my Luke... After the second 50ml above, Luke had a small green stool without any visible blood. I think this scare the doctors and hence they recommend to slow down the fluids...

Luke's WBC, HgB, and Platelets are ALL NORMAL today. His dose of steroid is being decrease by another 20% tonight. He is now at 90mg of Solu-Medrol twice a day. We started at 250mg twice a day...

Thank you grandma Ikuko for the food and your help today.

Wednesday, May 01, 2002 at 01:29 AM (CDT)

Day +44:

Well, not much to report. As they say, "no news is good news." Mom report no stool last night or today. Luke's behavior was not as well last evening after dad left. He cried for almost 2 hours and need a dose of "vitamin H"; half the previous dose. Tonight Luke started to have a tantrum. We had to take him outside of the room, with his mask on ofcourse (what a good change to be able to leave the room). He finally settle down and we avoided a dose of haldol. Luke's WBC is finally within the normal range. It's 13.1 (5-16), not too high from being on steroid or too low from not engrafting. His platelets is an amazing 141K (150-450). His HgB is 10.7 (10.5-14). Luke's steroid dose is down to more than half what he started with. If he continues to do well, he might be able to take some clear liquid in a day or two.

Everyone, thank you for everything, especially for all of your prayers for Luke and other childrens afficted with childhood disease.

The Leukemia and Lymphoma Society Triathalon Team in Training is having a triathalon event this weekend. Luke is one of the honoree. Good luck to everyone competing in the event...

Goodnight.

Tuesday, April 30, 2002 at 07:25 PM (CDT)

Day +43:

Luke and I had a wonderful night... NO, I repeat, NO stool. He had only one wet diaper that was changed by the nursing assistant in the middle of the night. Guess what, it's now 5:30pm PST and still no stool. Luke's GVHD of the gut is in control... His GVHD of the skin is also better. It's amazing that the color of Luke's skin, the GVHD, can change so rapidly. Last night and this morning, it was so visible. Now, it's almost gone. Luke's counts remain essentially unchange. This morning, while watching Sesame Street, Luke smile and clap. What a wonderful sight... He spent most of the day watching videos and sleeping. Dad spent most of the day on the web, downloading graphics and signing guestbooks...

Thank you Joe, a volunteer here at LPCH, for watching Luke while I heated up my lunch. Thank you everyone for your prayers, for reading our updates and for signing our guestbook.

Monday, April 29, 2002 at 10:11 PM (PST)

Day +42:

Mom reports that Luke's stools continue to improve in color (more brown) though he is having more abdominal discomfort. We think that he is having cramps. His pain medication was increased today. The result of the "whole body CT" has not reveals anything not expected except maybe a possible sinus infection. Luke is starting another antibiotic today to treat the possible sinus infection. He is also re-starting Bactrim with the addition of leucovorin today. Look like "lipids" are being added back to the TPN. Luke's counts remain stable. His platelets is increasing on it own to 80K (150-450). In addition to the stools, other laboratory findings suggest that Luke's internal bleeding has dramatically decreased or even stop... We hope that this trend continues as we continue to decrease his steroids. We are concern that Luke does not want to swallow anything. He continues to make some mucus but does not want to swallow. The previous upper endoscopy reveals a very inflammed esophagus. It look so much like a fungal infection; though, all biopsy and cultures has not demonstated a fungal or any infectious etiology. The concensus at this point is that it may have been GVHD of the esophagus. Maybe there is a recurrence of the esophagitis, from whatever cause... Previously, before the endoscopy, Luke was having severe nausea and vomiting. Round clumps of tissue like material was being produced. Currently, we are only noticing some mucus production and no nausea or vomiting... Luke's skin on his cheeks, scalp, back, arms, and scrotal region has a rash that looks like GVHD of the skin. It is much milder than when he first had GVHD of the skin, soon after engrafement...

I was back at work today and saw quite a few patients. One patient I remember in particular was a new patient. She was an Asian mother who was accompanied by her 2 1/2 year old son. He was a very handsome boy and obviously was mixed-race. We had a long discussion about mixed-race childrens having difficulty finding potential bone marrow donor. We also discussed about saving umbilical cord blood since the chance of finding a perfect match in a sibling is only 25%. I was happy to hear that she was already registered with the NMDP for about 5 years. As a physician, I am also a teacher. I am trying to teach and inform my patients about saving umbilical cord blood and the under-representation of ethnic minority on the bone marrow registry, especially those of mixed-race heritage. Luke has taught me to be more patience with my patients. He has taught me to be a better physician and to live more of life in the present...

Goodnight.

Sunday, April 28, 2002 at 01:11 AM (CDT)

Day +41:

Luke slept fairly well last night. Grandma Ikuko came this moring to help with Luke. She brought a wonderful breakfast for pappa. Unfortunately, Luke is still not allow to eat or drink yet. Luke had several diapers last night that had green color mucus with occasional small spot of red blood. The melena is resolving. HORRAY. We hope that this will continue to improve. The team feels the same and is lowering his steroid dosage by another 20% starting tonight. Luke's counts and electrolytes continue to hold steady. He is making slightly less mucus and we are beginning to think that he is getting over his viral infection. Luke gave a beautiful smile tonight while watching Peter Sam (one character on Thomas the Tank Engine) on TV. He gave more smile when we pull out the camera and took a few shots. Luke always loves to smile at the camera... Sarah is with Luke tonight. Pappa is home to get a good night sleep before returning to work tomorrow. Both Sarah and I will try to resume our regular work schedule this week. One of us will be with Luke at all time...

Thank you sister Mai & Scott who left for OKC today. The grandparents and Christina was very happy that you guys gave them a mini break with your visit. We are always happy to see you guys. Please come visit again as soon as you can... Thank you Christina Cheetham of Heritage Baptist Church for the food today. Thank you Debbie Phillips and family for those beautiful flowers.

Saturday, April 27, 2002 at 12:40 AM (CDT)

Day +40:

Last night mom again stayed with Luke. I was home by about 10:30pm and stayed up to 12:30am having a glass of wine and talking to Mai, Scott, and Nicole. It was delightful to have a glass of wine and a pleasant conversation. Thank you Scott for taking my dad at 7:00am up to the hospital to help Sarah and giving me a chance to get some exercise. It felt so good to play basketball this morning, even in the wet and slippery condition. The sun actually came out and smile at us for two games before the rain return. My batteries are re-charged for another week. I came to the hospital by 2:00pm. Luke is always happy to see his pappa. Sarah was exhausted. Daddy took over and gave mamma time to eat, shower and to take a nap. Sarah reported that Luke had a few more black/melenotic stool last night. An explanatory note: melena is black stool. It represent "digested" blood that came from within the intestine, usually the small intestine and stomach. Blood in the gut is a natural laxative; hence, black diarrhea stool is not a good sign. Luke's amount of melenotic stool is stable or slightly decrease. It is definately decreased from previously. Because Luke continues to make gurgling noise from his mucus production, he underwent a "whole body CT-Scan" today. He did so well with a dose of benadryl, phenergan, and two push of the PCA (fentanyl) pump. He slept like a baby through the whole procedure. The team was looking for any fungal infection/focus, especially of the lungs. The preliminary reading is "negative" by the resident. We will wait for the final reading... Luke slept most of the evening since he is still under the influence of the above medication.

Luke's WBC today is 43.3 (5-16). The numbers in parenthesis represent the normal range for the specific lab. Steroids usually elevates WBC (so does infection). His HgB is 11.7 (10.5-14), Platelets is 50K (150-450). His Pt/PTT, fibrinogen, d-dimer are essentially normal. His electrolytes are fairly normal. We continue to nurse Luke's peri-anal rash/wounds with each diaper change. It's improving slightly. Once the steroid dose is further reduce, it should heal much better...

Friday, April 26, 2002 at 02:30 AM (CDT)

Day +39:

Last evening, Sarah stayed with Luke. She reported that he had one melenotic(black) stool at about 1AM. I went home for a good night sleep. Today, I came to the hospital at about 9:30AM. Luke's lung sounded not as good as yesterday. He had a repeated chest x-ray that was again "negative." He had repeat nasal swabs today. He was given iv IgG (immunoglobulins) to "boost" his immune system a little. Last night he was given blood transfusion. The steroid dose was decrease by 20% starting with tonight dose. Luke receive two breathing treatment today to try to help his lung. Mucus production is slightly less today. His peri-anal rash is improve in some areas, but worse in other. Luke's behavior is more calm than previous. We think that he is fatigue and does not have the energy to make a fuss. As I was leaving tonight, Luke had 2 more episodes of black stools. We pray that the diarrhea does not worsen with the decrease in steroid dosage.

Tonight one of our JMML family member, our neighbor here at the hospital, Kayli Jankowski (www.caringbridge.com/ca/kayli has just been diagnosed with an infected gallbladder with an adjacent abscess. She is to undergo a needle aspiration procedure to drain the abscess and possible removal of the gallbladder as well. The procedure(s) is higher risk since she is day +18 post transplant and is immunocopromised. Please say a special prayer for Kayli and her family tonight. We know that they would appreciate your prayers and some encouraging words in their guest book.

Goodnight

Thursday, April 25, 2002 at 10:50 PM (CDT)

Day +38:

Luke’s behavior all of yesterday was quite different. He seem more fatigue and took more deep breaths. We also noted an increase in mucus production to the point that we had to mechanically “fish out” the secretion. We also noted a vesicular eruption on the roof Luke’s mouth. We were concern that he may have acquired another viral infection. Last evening, Luke slept fairly well without much interruption. I think that we had only two interruption for diaper changes. The stool appears to me more greenish and maybe even slightly brownish in color with traces of red blood . This is much improved compared to changing diapers every 30 to 60 minutes earlier when the GVHD was worse. An explanatory note, GVHD is graft versus host disease or the graft rejecting the host. Luke does not have any infectious etiology for his diarrhea. Luke’s dose of steroid last night, this AM, tonight, and tomorrow morning is at 20% lower than his previous dose. If his diarrhea does not worsen, we will probably decrease the dose by another 20% for some length of time before repeating the steps. If at any point in time there is a worsening of his diarrhea or GVHD, Luke will receive the experimental medication mentioned in earlier journal. This morning, Luke had his bone marrow biopsy performed. It took three doses of fentanyl, two doses of Demerol and two doses of versed and four adults to hold Luke for the procedures. He is not only tolerant to the pain medications, but he is also very strong. There may be some effect from the high dose of steroid as well. The preliminary result of the bone marrow biopsy is encouraging. The granulocytes appears to be “mature.“ This is probably the first good news we have had in a very long time. We are waiting for the sample to be analyze to see if the marrow is that of the donor (what we want) or that of Luke’s old marrow. The results will not be available for about two weeks. In the meantime, we will continue our battle with the GVHD.

Today, my sister Mai and her husband Scott came from OKC. Together with my mother, they came to visit Luke. Sorry for the masks; but, we have to be cautious. Thank you for bringing dinner. Thank you Sue Andy Nicholas for bringing lunch and the Thomas Train and video tapes that Luke greatly enjoy. The meals were both delicious. Thank you Jenny for the wonderful breakfast this morning. Lastly we would like to thank everyone for reading our journals and signing our guest book. Although we cannot respond to everyone individually, we want you to know that we look forward to reading them each and every single day. In term of visiting, because Luke’s immune system is still very fragile, we are trying to minimize personal contact. If you don’t mind viewing Luke from an adjacent room window and speaking with us via the intercom, we would love to have people come by. We want everyone to know that if you are sick or have been around anyone ill, you should NOT come for a visit. We do try to broadcast Luke via Yahoo messenger web cam. Our Yahoo id is “lukegdo”. We don’t have a specific time but usually it’s in the mid-evening hours. If things are too hectic, we tend not to broadcast…

Goodnight everyone.

Wednesday April 24, 11pm

Day +37:

Oops, we are sorry for what happened with last night journal entry. The font color was the same color as the background, hence white on white equals blank. We made up for this by adding trains to the page. Luke loves trains...

Last night, not much happened. Luke had about 2 diapers only. What was totally amazing was that with one dose of Haldol ("happy juice" or "vitamin H"), Luke's behavior was 180 degree different. He was not ballistic, he was not constantly crying and demanding food or the search for food. He was happy lying in bed watching his video tapes. The effect lasted even through today and Luke has not needed a second dose. For those of you not familar with Haldol, it's an antipsychotic medication. It help both Luke and his parent so much to see him not suffering as much. Throughout today, we noted that Luke was taking deeper breaths. Tonight we noted vesicular lesions on the roof of this mouth and Luke is making more mucus and more gurgling sounds with breathing. It's possible that Luke may have another viral infection. We hope not... Swabs were taken for viral cultures and DFA (direct fluorescent antibody test). Luke is staring back on acyclovir tonight in the event that its herpes. Luke's steroid dosage is being decrease by 20% starting tonight. We hope and pray that the diarrhea will not worsen; else, he will get the experimental monoclonal antibody. Luke's counts are about the same as yesterday. He will be receiving a platelets transfusion tonight in preparation for his bone marrow biopsy tomorrow. Luke's perianal rash is slowy improving.

We would like to thank the family of baby Vincent Luu who came by for a short visit today. Thank you for the balloon and card. We would like to thank all the people who are following Luke's progress and leaving encouraging and thoughtful messages. Of course, we cannot thank our families and friends and all the medical personel enough for their direct involvement in Luke's care.

We continue to fight this battle with Luke and it is with your thoughts and prayers that keeps us going. We thank you with all our hearts...

Tuesday, April 23, 2002 11pm

Day +36: It's dad's day to stay overnite. It has been a rough several days due to the realization that it's possible we may lose our Luke soon. It's something that has always been in the back of our minds since we know he has a bad disease, but we have kept hope which has helped us go on. Of course, we still have hope but this past weekend we had to stare reality right in the face: Luke has Stage 3 graft vs. host disease of the gut and may not respond to steroids. He has persistent gastrointestinal bleeding with drops in important clotting factors. We were also told the devastating news that some of the cells seen on his blood smear look abnormal and he may have relapsed his JMML. It was like a cold bucket of water thrown on us or maybe more descriptively a punch in the stomach. We are still trying to accept this and have spent most of our time praying-as Pastor Mike taught me, instead of the self talk people usually have in their minds, I should talk to god which I have been trying to do. I continue to pray for Luke's healing from the GVHD and leukemia. I continue to pray for strength, hope, courage for Lam and myself and for us to be a comfort to Luke. I have repeated over and over "Please God heal Luke. Please God, save our son." The best feeling in the world is to hug him tightly and tell him I love you, I love you.

Luke's diarrhea has certainly slowed down in the last few days compared to several days ago, but each stool is bloody. He had to receive more blood today and will receive cryoprecipitate tonite. I don't know if people realize how much they love someone or something until they think about life without that person. It is very hard to think of life without our Luke. He has been the center of our lives for so long. We have memories everywhere. When Lam or I come home from the hospital, we see his little clothes and shoes in the closet, his toys everywhere, his little gocarts and wagons all lined up in a row waiting for him to ride them. Please think for a moment of the person or persons most near or dear to you not being there any longer. It is painful yet it helps us to realize their importance in our lives and to not take them for granted. The next few days or maybe weeks will determine whether Luke makes it through this hurdle. I want to thank all those who have and continue to pray for Luke, even strangers around the world. Thank you to our staff at work and Chris, Crystal, Viet, and Linda for all your prayers and encouragement. You have helped us in ways you don't even know and have been so thoughtful even before Luke was sick. We had a wonderful visit from Jim Mack from the Team in Training of the Leukemia and Lymphoma Society today. He will do a triathlon on May 4th and Luke is one of his honorees. Thank you Jim. Thank you and your son for choosing the Thomas trains for Luke. Thank you for your fundraising for the Leukemia and Lymphoma Society and for all the work in signing up the l00 donors yesterday. You all are doing a great job. Your visit was very uplifting to us. Thanks Pastor Mike and Christina and all of you at Heritage Baptist Church for your support and prayers. At first I was angry at hearing the latest news-at the doctors and at god. I wondered why god was allowing my son to suffer so and why he would consider taking a child who has experienced so little of the joys of life. I ran into another mother with a very sick child and at the end of our conversation she said that she was at peace with god about her son's illness. She then said that God loved Luke even more than I did. I pray that God will grant me peace and that I can place all my faith in his will. I have prayed for him to help us bear Luke's suffering and to comfort him. Today, the child psychiatrist suggested that Luke start low dose Haldol to control his possible steroid psychosis. This seems to have worked in calming him. Thank you god. He remains hungry and thirsty but he is calm now. I believe that his yearning for food and drink and his out of control behavior were one of the hardest things Lam and I and Luke have had to bear. Anytime your child or loved one suffers, you can't help but suffer too.

Luke will have a bone marrow biopsy on Thursday. The results will help resolve whether he has a recurrence of his JMML. If he does, unfortunately, there are not many options. We pray that the leukemia is not back. We pray that the GVHD resolves with the steroids and the bleeding stops. If Luke is meant to go to heaven soon, we pray that Lam and I can accept God's will. Lam and I know that no matter what, there is a reason and that part of our mission in life will be involvement in issues related to leukemia. Give your kids an extra hug for Lam and I.

Monday, April 22, 2002 at 11:36pm

Day +35:

Last night, Luke slept fairly well. We only had 2 diapers change. The stools continue to be melenotic. Once Luke woke up at about 5:30am, all hell broke loose. Luke became ballistic, looking for anything to eat or drink. He was unconsolable, uncontrolable, and relentless in his search for food and water. It was as if we were starving him to death. The primordial urge to eat and drink made Luke, and his parents, all too crazy today. At one point, he pulled one of the bottle from the IV pole down to try to drink the fluid. He played with water from the sink faucet and even try to go after the toilet bowl water. We gave Luke a couple of ice chips and boy, did he enjoy them. We paid the price afterward when he demanded more and we refuse to give in. It was doctors order... We finally had to medicate Luke to have him sleep through his hunger pain and craving for food and water... It was so painful, almost unbearable, to watch Luke in this way. He was suffering so much... Luke's behavior is worsen because steroids increases hunger and can cause "steroid pyschosis."

All of Luke's count are holding today. We continues on mega-dose of IV steroids for now. He definately has had a positive response to the steroids. The plan is to wean him down very very gradually. If he has a worsening of the GVHD, he will get the experimental monoclonal antibody to T cell (Nuvion).

Please continues to pray for Luke and our family as Luke's condition continues to be very fragile.

Sunday, April 21, 2002 at 12:01 AM (CDT)

Day +34:

Last night, Luke slept fairly well. He had diaper changes at midnight, 3, 5, 6:30, and 7am... It appears that the diarrhea is just slightly less; though, the color is more black. Black stools, melena, is a sign of digested blood from internal bleeding. In Luke's case, most likely from GVHD causing inflammation and intermal bleeding along his small and large intestine as was seen on the endoscopies. On a positive note, it appears that Luke's hand and feet rash is decreasing, less red and less peeling. Yesterday, Luke was itching around his anal area and scratch so hard that he dug into his skin and denuded several areas. This is was a terrible thing as he is having frequent diarrhea and will irriate the skin in this area increasing the risk of infection. He is already at increase risk for infection because of his leukemia and the high dose steroids. We really did not need this extra complication to worry about... We are taking extra care to prevent him from scratching and putting antibiotic cream, aquaphor, and "Butt Balm" on the area with each diaper change. This area is a little worse today... We will also try to "air out" the area as much as possible...

Overall, Luke has a little more energy today. His rash is improved and the diarrhea is slightly less. Aside from this morning crying spell because he wanted food, he was fairly comfortable thoughout the day. I HATE to see him suffer so much from hunger pain. My poor son, now that he has the appetite and wants to eat, we are purposely starving him to rest his gut. Of course, we are actually not starving him as he still get his TPN and iv fluids. For an adult who might go on a fast for religious or political reasons, it is done conscioustly. For a 2 year old child to be denied water, food, or anything else by mouth must be severe torture. When will Luke be able to eat again? The short answer is, I don't know. A more formal answer is when the diarrhea is much less, when the GVHD is control, when the gut is able to tolerate food without aggravating the GVHD. We are continuing on the mega-dose iv steroid for another day as Luke has obviously responded...

Luke's WBC this morning was 16.2, HgB 11.0, Platelet 26K. His PT 12.7(INR 1.1), PTT 21.2 with a decreased fibrinogen of 85(223-407). His electrolytes continues to improve. By 6pm tonight, Luke's HgB has decline to 9.6. His platelets is 28K. Luke was given cryoprecipitate earlier in the day to bring up the fibrinogen. He will be given red blood cells tranfusion tonight.

Both Sarah and I have decided to take another week off from work to care for Luke in these critical times. We know that this will be an inconvenience for our patients who's appointments will have to be reschedule; but, we know our patients will understand our situation.

Saturday, April 20, 2002 at 02:15 AM (CDT)

Day +33:

Dear Family and Friends:

As I type this, my Luke is asleep. He sleept well last night. I only had to change his diaper a few times. Sarah and my brother Son, from Norway, came at about 7:30am. Son and I went to play basketball while Sarah, and later Mimi, took care of Luke. After our B-ball game, we came home and I held my Christina for a little while. We had lunch at Krung Thai and came up to the hospital by 1pm. Luke, as always, was very happy to see his father. What I noticed next was horrifying to me. The skin of the tips of his finger were peeling off. Not the whole skin, but like what your skin would do after a sun-burn. His palms and feet were more red. He was very uncomfortable from pain/hunger. He then started to have multiple and multiple diarrheal stools, dark green to black in color. I lost counts of how many diapers I changed. Obviously to me, Luke has worsen from yesterday. His WBC continues to rise at 25.6 (5-16), HgB 12.6 post transfusion from last night. His platelets has been drifing downward in the last few days, but was alarmingly at only 51K today. We had a long discussion with our attending physicians as to our possible options:

1)Do nothing and continue with the steroid taper
2)Give Luke an experimental medication call Visilizumab
3)Go back up on the steroid.

The decision as what to do was very difficult. What we decide to do may mean life or death to our child. I will try to explain to you, the reader of Luke's journal, as to how we arrive at our decision. Option 1 was definately not an option for us. To do nothing and wait was something we coud not do. We feel that the GVHD was worse as the diarrhea seems worse, Luke was in more pain, his rash of the palms and feet was worse (a sign of GVHD), and his platelets has drop quite significantly. We were correct initially when Luke's started having diarrhea that it was GVHD, eventhough no one listen to us. We waited and waited until it was so bad before finally admitting that it probably was GVHD and finally did the endoscopy to confirm our suspicion. This time we would not wait. Our instinct tells us that Luke's GVHD is worsening and we will not wait. We will take action... But what to do??

Option 2, to give an experimental medication that is a monoclonal antibody "that selectively attacks the problematic donor T cells" to decrease the GVHD. This antibody has only been given to a handfull of patients. We are nervous to give it a try as it is definately still experimental. It's something that we will have to resort to if there are no other option. We would definately be a human guinea pig in this instance. We will hold off on this as a last resort.

Option 3, to go back up on the iv steroid, was what we agreed upon with the attending physician. We would go back to the original mega-dose of iv steroid for 24hrs (two doses) and see what happen. If Luke continues to worsen, we will have to try option 2, the experimental medication. If Luke improves, we are not sure what to do next. Should he continue on the mega-dose of steroid and for how long? How will we taper the steroid? He cannot continue on high dose steroid indefinately as the side effects are too many and too dangerous. If he improves and starts to worsen again with tapering of the steroids, we again, will have to use option 2. As you can see, there are not so many options remaining that we can choose from...and it's not exactly clear as what is the best course of treatment...

Luke took a late afternoon nap today. His steroid was infused from 7-8pm tonight. He woke up at about 7:30pm and was happy watching "Little Bears." He actually smile (:-) and clap seveal times. He looks so beautiful when he smiles. It just breaks my heart to know that these may be some of the last few smiles that I get to see upon my son's face... We have won so many battles and yet may ultimately loose the war againt JMML... As I said to Sarah today, "Mama, we are doing everything we can for Luke, we are trying to save his life."

Please continues to pray for Luke and our family, for Cindy, Kayli, Colby, Zacharyd and all the other families with childrens who are fighting the battles against Leukemias and other childhood diseases.

Goodnight

Friday, April 19, 2002

Dear All, Well the good news is that the diarrhea is slowing down with less volume than yesterday. Luke's pain is also much better controlled with higher dosing of fentanyl. He has lost some blood due to the inflammation in the GI tract and is receiving a blood transfusion tonite. His hemoglobin was 7.8 today. His albumin level was low again at l.7 due to protein lost in the diarrhea and he will continue to be replaced every day as needed. A new problem now that is not dangerous but hard to watch is his huge appetite due to the steroids. He is ravenous and constantly looking around the room for food or anything to drink--of course we have hidden it all. He searches under the bed for the ice chest we kept milk and juice in. He is often inconsolable. As parents, we want to feed him but we know that it will cause his diarrhea to worsen and can make the graft vs. host disease(the donor cells attacking Luke's gut-esophagus, stomach, intestines) much worse. At one point today, I thought he was trying to take a bite out of my arm! I'd better wear long sleeves. I was thinking of bringing the plastic food from the surgery clinic we used to go to. When Luke was told not to eat before procedures, he used to try to take bites of the plastic play food there. Anyway, this is just another form of suffering he has to endure and we hope to keep him distracted enough to lessen his thoughts of food. I thought this might just be for a few days but it could take many days. The high dose steroids have also caused him to have mood changes including irritability, aggression, emotional swings. He spent a lot of today screaming and crying as though he was having a huge tantrum. This is also difficult to watch. I asked the team for some medication to calm him. Ativan was tried without much reaction. We will likely continue benadryl as needed. Luke had no vomiting today. He is retaining fluid which makes his face appear puffy. We pray that the steroids will continue to do their magic in decreasing the graft vs. host disease. We pray that we can hold on to the vision of the big picture which is the recovery from the transplant and cure of JMML. I'm happy to hear that Colby, Cindy, and Kayli-all with recent transplants for JMML are hanging in there and doing well. One thing I didn't know about GVHD is that it can be triggered by viruses and even by sunlight. We will need to gather more information on GVHD to ensure help prevent Luke from exposures which may initiate another event. Thank you Pastor Mike for coming by this am and praying for us. Thanks Jack for the delicious Chinese food. Since Luke cannot eat, we are not getting any of his low microbial diet (bone marrow transplant diet). Makes you wonder if we should look at a microscope and examine a regular "high microbial diet" meal. Thank you for all your get well wishes and prayers.Thanks to Lam's brother Sun here from Norway for coming and for his daughters' cards for Luke. Thanks Dung for the ongoing rides for Lam's dad and the gift for Luke. Please continue to pray hard this week for Luke's recovery from the GVHD since he is still not out of the danger zone.

Thursday, April 18, 2002 at 10:13 PM (CDT)

Day +31:

Last evening, Luke was restless during his sleep. He had several episodes of pink diarrhea. Everything seem to get worse at about 3-4am. At 4 am, Luke woke up and demanded milk. I was weak... I gave in. I was acting as a father and not as a physician. He drank 8oz of milk in one sitting. It seem like in one breath. At 6 am he demanded more drink and took about 6oz of water. I had to stop Luke and hide the ice cooler in the bathroom... This was my cheap version of an endoscope. Because he is able to swallow, I know his esophagus is improving. On that topic, thus far, the result of the upper endoscopy has not reveal a CMV (cytomegalo virus) infection. Surprising to me, the result for fungus is negative thus far. Luke continues on ampho b. Since he is on mega-dose of iv steroid, even if the pathology from the esophagus does not show fungus, it's still best to have him on ampho b. People on steroid are at increased risk of acquiring fungal infection. I would have never thought that "amphoterrible" would be my best friend. It's a tried and true drug that has been around for a long, long time. During the morning shift of 8 hrs, Luke had about 1 liter of diarrheal output. They are matching his iv fluids to his diarrhea output; ie, his input should at least be equal to his output. Luke's electrolytes are much improved. His blood counts are also in the appropriate range. In term of pain control, Luke was switch to Dilaudid late last evening. Last night and more noticeable today, we noted Luke's tongue to be somewhat swollen and he was holding it upward toward the roof of his mouth. Since the only new medication was Dilaudid and high dose steroid. The tongue might be a reaction to the Dilaudid. The pain mangement team switch Luke back to Fentanyl at a higher dose. Tonight, Luke is sleeping and breathing through his nose. His tongue was down and up at time throughout this afternoon. Hopefully, it has resolve.

We would like to thank EVERY members of our team, from physicians to housestaffs to nursing staffs to housekeeping for their excellent care. Although we may not say it enough, we are truly greatful and thankful.

We would also like to thank each and everyone who is reading and signing our guest book. It gives us great comfort to read each guest book entry and to know that we are not alone and that everyone is pulling for Luke to make it through this ordeal. Thank you for all your prayers for Luke and our family.

Wednesday, April 17

Day +30: Luke could use your extra prayers now. I thought that his probable GI GVHD was no big deal and par for the course but the team expressed this afternoon that they are very worried about him. He has primarily GVH grades l and 2 in the GI tract which is mild and moderate but in the descending colon he has grade 3 which is more severe. These were the preliminary diagnostic impressions from pathology of the biopsies yesterday. I know that Lam and I have had many frustrations and complaints about things at the hospital but I appreciate that the team spent much of their time today conferring about Luke's case, speaking to other doctors, looking at his trends and at the pathology slides and blood smears and then discussing in depth their concerns and plans for treatment for Luke. We are fortunate that we have the expertise of such physicians as Dr. Agarwahl, Dr. Amilon, Dr. Dahl and Dr. Pillai. The plan today is to increase Luke's steroids to high dose to try to stop any progression of his graft vs. host disease which could be very dangerous or even deadly. He is currently on 2mg per kg per day which will be increased to 30mg per kg per day. He will get this whopping dose for 24 hours and then will be tapered. At the same time, Dr. Agarwahl will attempt to find out if she can obtain another drug which is used in adults to treat GVHD but not in kids as a trial for compassionate use in Luke. I appreciate her efforts on his behalf. Both steroids and this other drug if available will hopefully stop Luke's GVHD of the gut.

He was feeling quite badly today. I was with him all nite and day and his diarrhea was so frequent that I got only one hour's sleep. He is exhausted and in such bad pain that he spends much time writhing on the bed or bent over in cramps. This type of pain in GVHD of the gut is difficult to treat and can usually be reduced but not eliminated. The pain specialists saw him today and suggested a change from fentanyl which doesn't seem to curb his pain to dilaudid which should start tonite. I pray that this will help him. He has suffered so much already. Seeing him suffer so much now is almost more than we can bear. My mother today and Lam's father yesterday were crying intermittently throughout the day. I'm trying to reassure them that he will get better but now I am not as sure. He is very weak and has barely energy enough to watch a few minutes of videos. He continues to vomit. His electrolyte status continues to be very difficult to control and sodium and potassium as well as others remain low. His albumin level today was l.7. He is losing this protein in his diarrhea. He is having some albumin infusion tonite. His counts stay stable except for a mild decrease in white count. It was stated today that it is possible that his RSV infection triggered the GI GVHD.

Lam and I will continue to advocate for Luke to keep him as comfortable as possible and to make sure that all is being done to stabilize the GVHD. If it progresses, it will be like having cholera with severe loss of fluids. I pray as much as possible for him and that God will heal him, help control his pain, give wisdom to his doctors. It is ironic that he has engrafted so well with pretty much near normal counts only to have the GVHD of the gut which was likely triggered by his viral infection be the major risk to his life at this point. Please pray for his healing. Please pray for our strength. This has been the most difficult time thus far in his transplant journey. Thanks to Drs. Nicole Thai and Minh Tam Nguyen for the delicious food and videos for Luke. I'm sorry I couldn't come out as Luke was having severe pain. Thanks again to all the donations to help alleviate the costs of transplant. Thank you to Diane and Ron Kintner in Iowa for all your prayers. Thanks Sue and family for all your support and to Pastor Mike and Christina Cheetham. You may not realize it, but each of you and so many others help us get through each day and give us the strength to care for Luke. We pray that God will bless you.

Tuesday, April 16, 2002 at 07:47 PM (CDT)

Day +29:

My frustration continues...Last night, during my watch and as Luke was vomiting, I noted small chunck of white/pink mucoid material coming out. I have seen this before in Luke's vomitus. I thought to myself, these things are not normal. They could be tissues. Maybe we can analize one of them to see if there are fungal elements in them... I spoke to the intern on call about sending a sample to the lab for analysis. Her comment to me was that it's probably related to the RSV and increase in mucus production that he then swallow and vomit up the material. Anyhow, since Luke was going to get his upper and lower endoscopy in the morning, I did not say much... Lying in bed, I thought to myself, I know that Luke is not coughing these things up and then swallowing them. I know that he is vomiting them up. Why am I not being heard? Why do I get no respect? Am I Rodney Dangerfield? Here I am speaking to an intern. I completed my internship in 1993. I have 10 years of clinical experience, not counting the 2 years in medical school. Yet, I get no respect. Maybe I should have them address me as Dr. Do instead of "Dad" or "Mr. Do." Maybe then they will remember that I am a physician and a father and that they should take me more seriously, especially my observations and thoughts. Why, Sarah and I spend 24/7 with Luke when they spend about 5-10 min a day max. The above mucus incidence just remind me that we are in an age of "high-tech" medicine. We no longer do KOH to look for fungus, or gram stain to look at the different type of bacteria anymore. We have CT-this and Mri-that and scope this and scope that... In practicing medicine, we no longer have the time to go do a gram stain or a KOH, we are pressured to see more and more patients... What a sad state of our profession...

Enough philosophy. Here's what happened today. Luke had an enema this morning and went down for his endoscopy (upper and lower). Everyone from anesthesia and GI addresses me appropriately and formaly as "Dr. Do." Sarah inform me that here on the floor its more informal and everyone is on a first name basis... The upper endoscopy reveals a severe infection/esophagitis (infection and inflamation of the tube connecting the back of the mouth to the stomach). The stomach itself is not completely normal but appears slightly "swollen." The duodenum, the part of the small intestine that the stomach empty into, was severely inflammed, suggesting GVHD. There was also a possible ulcer in the duodenum. From below, the colon was also inflammed suggesting that the whole GI system is affected by GVHD. They did not do a full colonoscopy as it was not necessary. Multiple biopsies were taken. We were given photographs of the different pathology. Guess what, on the picture of the esophagus, there is one of those mucus like oval body that I have seen Luke vomited up.... We went next to the recovery room where Luke woke up gradually. We would like to thank the anesthesia and GI physicians for their excellent care of us today. Their formaitly and professionalism was quite welcome by me. Because the result of the upper endoscopy suggested a fungal (candida) infection, Luke will be restarting lysosomal amphotericin b today. Another frustraring point is that we agreed on ampho b at about midday and now it's almost 8 pm and it's still not "hanging." They move like slugs here, not quick enough for Speedy Gonzalez like me...

Luke is quite a lucky boy. Because of the transplant, and his WBC being normal, he actually has an immune system, abeit still immunocompromise, he is fighting this infection. If this had happened a few weeks earlier during the conditioning regimen (preparation for transplant with radiation and chemo)or soon thereafter, Luke could have develop systemic fungal infection. This could have been lethal as systemic fungal infection are notorious for being difficult to treat...

Luke's WBC today is 8.9, his Hbg is 10.8 and his platelets is 165. Luke's sodium is still 130. His potassium is worse at 3.3 (4.1-5.3). His calcium and phosphorus are low. His albumin, a reflection of his nutritional status, is very low at 1.8 (3.4-4.2).

Monday April 15, 2002. 11:30PM PST

Day +28:

Mom was with Luke last night. He continues with multiple diarrhea. It's greenish in color and watery in consistency with occasional strands or clumps of mucus. His vomiting continues. He vomited at least 3 times tonight. The vomitus is bile like with clumps of white to pink mucoid materials; occasional small fleck of blood was also noted. Luke is quite fatigue and tired. He looks so worn out, a body ravage by disease. My poor son, who can't even speak to tell his parents how much pain and suffering that he is going through... I feel so bad for him.

What is causing Luke's diarrhea and anorexia? Probably GVHD... Well, we will find out tomorrow when Luke will go "under the gas" (general anesthesia) and be scope "from above and below." From above, a fiberoptic endoscope will be introduce into the mouth, then down the esophagus and into the stomach, and then proximal duodenum. During this process, the GI doc can visualize and biopsy any pathology. From below, another fiberoptic endoscope will be introduce into the anal canal, up the sigmoid and descending colon, across the transverse colon, and down the ascending colon, looking and doing biopsy for possible cause of Luke's diarrhea. Of course, Luke will get an enema to clean out his colon in advance... HOW FUN??? Luke has been through these procedures before, during his inital admission last October when he was having internal bleeding... Isn't fun? We MUST do it again. (I'm sorry for being sarcastic...well, why not, I'm typing the journal and I can be as sarcastic as I like....)

Luke's count today is again good. His WBC is 7.3, HgB 11.6, and Platelets 148. Luke's HgB is currently being check every 6 hrs because earlier in the day, one sample had shown that his HgB was only in the 8 range. This is most likely a spurious value as the repeat sample gave the result above. Nevertheless, to verify that he is not having internal bleeding, his value is being check every 6hrs. This is very frustrating for me. The more blood draw, the more blood he looses, the more chance of contamination, the more chance that the tip of the IV tubing may break (those of you that have read my earlier journal know what I mean by this), etc.... Luke's sodium is better today at 130, still low, but improve (Wow, something actually improve, can you believe it...) His potassium, calcium, and phosphorus is still low.

Thank you grandpa, Nicole, Bac Huong (our baby sitter) for helping Sarah and for visiting today.

Good Night =:-(

Sunday, April 14, 2002 at 10:44 PM (CDT)

Day +27:

No major events from last pm. We spent most of the evening watching TV. Our last Ribivarin was this morning at 5:30. We were only able to complete 75% of the treatment as Luke was no longer willing to be caged like an animal. This was partly attributed to the nursing staff taking about 20 minutes to get him a dose of benadryl. I refused to have Luke torture any further with this morning treatment and refuse to have this afternoon treatment until we have the result of this nasal swab. The result of which was negative and we did not have to torture luke this afternoon. We are now officially off the Ribavirin treatment. The plan is to re-swab his nose on Tuesday or Wednesday to see if he is still shedding the virus. If he is, we go back on Ribavirin.

Luke continue to be very fatigue and possibly even in pain. He refuse to eat or drink anything. He went as far as putting a straw into his mouth but did not suck up the fluids. His whole day was spent in bed, mostly sleeping and watching some videos. Luke is still having multiple diarrhea stools each day and continues to vomits throught the day. The team now thinks that the GVHD is the cause of the diarrhea. We are waiting for the higher dose of steroid and the FK506 to kick in and controll the GVHD. We have also increase Luke's pain medication as well...

Luke's count today is a little lower than yesterday. His WBC is 4.3, Hgb 10.8, and Platelets 135. Of more concern is Luke's sodium level which has worsen in the last several days, probably from the diarrhea. His sodium is 128 (nl 138-145). Low sodium can cause seizures, etc...

We would like to thank the Mavin Foundation of Seattle for organizing the Sixth Annual Pan-Collegiate Conference on the Mixed-Race Experience held at Cornell University yesterday. Luke's aunt Pearl spoke at the event. A bone marrow drive was also organized.

Thank you grandma Ikuko for helping out today.. Thank you Irene Yden and family for visiting today and for your understanding of not coming into Luke's room inorder to minimize exposing Luke to viruses.

Saturday, April 13, 2002 at 09:53 PM (CDT)

Day +26:

No significant event from last PM to report from Sarah. I am sure that his treatment at 3:30AM was not fun. Sarah did not get much sleep. After a good night sleep, I had a wonderful time playing B-Ball this AM. There's few things better than "running and gunning." After a good shower, my mom and I took Christina to a bbq and crawfish boil. Thank you Viet and Linda. The crawfis was wonderful. Christina had a good time as well. I was back at the hospital by 2:30pm. Luke slept most of the afternoon. As I am typing this journal, Luke's in his "cage" getting his Ribavirin treatment. The poor little guy, like a cage animal. Luke's actually getting use to the whole thing. He would lie in the cage and watch Bob-the-Builder. He vomited once while in the cage and we had to stop the treatment and clean up the mess before resuming his treatment. The Ribavirin is quite toxic and I am typing this wearing a mask, gown, and purple gloves. Everyone else in the room (Sarah and grandma) is wearing the same; of course, Luke is "bathing and inhailing" the stuff...

Luke's count today was PERFECT. His WBC is 6.1, Hgb is 11.3 (no need for transfusion), and platelets is 152K (NORMAL). Luke continues to not have any appetite. He is refusing all solids and liquids. He is on TPN.

Since the increase in the IV steroid, which he has received 2 doses, we think his diarrhea is beginning to slow down. I hope that we are right. His FK506 is being increase as his level is low. This should also help any GVHD as well.

Luke had another nasal swab for RSV today. This is not much fun. We want to see if he is still "shedding" RSV particles. If he has two negative swabs, we can stop his Ribavirin. His lungs sound totally clear otherwise.

Aunt Pearl called from Cornell today. She is giving a talk at the 6th Annual Pan-Pacific Symposium on Mixed-Race..... They are doing a bone marrow drive tomorrow inspired by Luke and other children in need of finding a bone marrow donor.

Thank you grandma Ikuko for helping out today...

Friday, April 12, 2002 at 08:24 PM (CDT)

Day +25:

Last night treatment of Ribavirin at 3AM was probably more difficult for dad than for Luke because I am not use to staying up for 2 hrs at that time. This morning treatment went fairly well with the help of benadryl. Luke continues to have more vomiting and diarrhea. His appetite is still zero. We think that his mucositis/mouth sores is coming back. The laboratory results confirm the diagnosis of RSV. All stool cultures has been negative. We are going back up on Luke's IV steroid and TPN. At this point, we are thinking that the diarrhea is from GVHD.

Luke's WBC count is 5400 (NORMAL), his HgB has decline to 10.4 and his platelets is almost normal at 129K (INCREDIBLE)... GO MARROW GO.... These numbers we are very happy with; though, he might need some PRBC (red blood cells)transfusion soon..

Mom will stay with Luke tonight. Dad get to go home for a good night sleep and B-BALLS in the morning.

Good Night All,

Thursday, April 11

Day+24:

Last evening was VERY eventful. Luke vomited many times. He had 5 BM. His Hickman catheter malfunction because of a tear in the catheter. The repair was a major ordeal at 3 AM. The section with the tear had to be cut and spliced together with a new catheter. Thank GOD it work. Needless to say, we did not get much sleep. Because we couldn't use the line for 4 hours, Luke did not get any fluids, meds, or nutrition for quite a numbers of hours. Any milk that Luke would drink usually would come back up.

Our team of physicians feel that the diarrhea is most likely not GVHD as the diarrhea is not profuse and watery. They feel that the RSV need to be treated. This was also the opinion of Infectious Disease team as well. Though, Luke's nose was re-swab again today and the "rapid test" is still negative. Because of Luke's immunocompromised status, RSV can be very sever and serious, the consensus was to treat. The treatment is not a simple one. He has to stay in a plastic "tent" and the Ribavirin is aerosolize into the tent for 2 hrs, 3 times a day for, I believe, 5 days. Thus far, our 1st treatment took 3 hrs instead of 2 as Luke was not cooperative for 1 hr. He look like the boy in the "bubble;" a small bubble as his legs are sticking out. Actually, the contraption is made up of 2 plastic boxes, one inside another with one face of the box extended by some extra plastic sheets where his legs stick out. Our next treatment will be at 3 AM. Luke will also get one shot of the vaccine for RSV tonight and planned for a monoclonal antibody medication to RSV tomorrow. Why were we not given the vaccine before the transplant??? This RSV infection has to be one of our major setback thus far... So much for our recent freedom, we are back in isolation, not because of Luke's counts, but because of the RSV.

On a happier note, Luke's WBC today is 5.6 (I forgot to mention that yesterday it was 4.0), his HgB is 12.3, and his platelets is a wopping 102.....all thanks to the new marrow... His hair is starting to re-grow at the roots...

Luke is back on IV FK506. He continues on his current dosage of IV steroid as his FK506 level is low and because of the diarrhea and possible increase in the rash of his hands and feet. He is on about 12 hrs of TPN. The fluctuation in sugar level with the "cycling" of the TPN may contribute to Luke's vomiting; or how much is contributed by his infection, his medications, etc....

Tonight, I would like to thank my parents for their sacrafice. My father is almost always here helping me out. My mother is home taking care of Christina and cooking for us. They gave up everything to bring me and my siblings to this country. They have sacrafice these many years to give us an education. Now, again, they have given up their golden years to help take care of Luke and raise Christina. Mom and Dad, we cannot thank you enough. We GREATLY appreciate your help.

Wednesday, April 10

Day +23:

Last night Sarah stayed with Luke and I was able to go home for a good night sleep. I took Christina in this AM for her 6 months visits and she received 4 shots (my poor baby). She is now 16 lbs.

Luke had some vomiting this AM. His appetite continue to be poor. He is not eating anything again. He drinks some milk but it almost always comes back up. We try to give him the FK506 (anti-rejection meds) orally today on 3 separate occasions without success. Luke had a chest x-ray today. He also had two nasal swab, looking for viral infection. The initial test was negavite; however, a latter test show that he has RSV (respiratory syncytial virus) in his lung. He will probably starts on some anti-viral treatment tomorrow. He is back on IV FK506. Tonight he had more vomiting; quite a few times...

Thank you Cliff and Jen for giving me a break by bringing Thai food for dinner and just keeping me company. Thank you Khang for your gift. Thank you VMC staffs for your kindness and prayers. Sometimes I wish that I was "back in the trench" with you guys.

Please continues to pray for Luke, Kayli, Cindy, Colby, their families and other families with children who are ill...

Tuesday, April 09, 2002 at 10:35 PM (CDT)

Day +22:
No significant events from last evening except that Luke seem a little more short of breath. This AM, his weight had went up to 13.7 kg. He was given one dose of lasix and by this afternoon, his weight has decreased to 13.4 kg. His breathing status has much improved. We were able to take Luke out of his room again today; no problem with the mask. Luke's appetite today was not as good. He had more vomiting and really did not eat much. He drank some milk, but most of it came back out.

Luke's WBC continues to increase. It's 7.1 today; even more normal than yesterday. His RBC is holding and platelets continues to increase slowly. His rash has essentially resolve. The only residual is some itching. Luke's iv steroid and iv nutrition continues to decrease. He is switching to oral FK506. Luke does not like taking any oral medication. He fights vigorously and try not to swallow the medication. He often gag and vomit the meds.

Please continue to pray for our family as well as all other families with sick children.

New pictures of Luke from tonight.

Tuesday, April 09, 2002

Day +21: Yahoo! Luke continues to do very well. His WBC today is 6.1, platelets are 35,000, still low but coming up on their own. Hemoglobin is normal. He is slowly being tapered off the steroids for his graft vs host disease skin rash which is much improved. Even though he is bouncing off the ceiling due to the steroids, it is wonderful to see in comparison to the way he was feeling last week. It is amazing to see that in one weeks time, he has gone from looking absolutely the worst he's ever been to almost normal--though about l0 times more hyper than before. His IV feeding is being tapered down so that he will have an increased appetite and drink more fluids. Again, we took him out on the ward with a mask on. This time we also had his shoes on. He is still in awe when he leaves the room. He is very quiet and looking around at everyone and everything. It is almost as if he is in shock and slowly readjusting to the real world again. All the staff is so happy to see him out of isolation and you can only imagine how mom and dad feel. His appetite is not back to normal but he ate his favorite rice today, more goldfish, and milk and cheerios. I think Lam and I are kind of walking around in disbelief. It's hard to fathom that a bunch of cells from another person were given IV to our son and are now reproducing in his body. If you think about it this is very different from a heart or other solid organ transplant. These cells had to find the right place to go to and reproduce. It is, as Nathan Jankowski said, a rebirth. Luke's transplant was 4 days before his birthday. Maybe we'll have a 4 day long birthday celebration from now on or 2 birthdays. Congratulations to Kayli Jankowski who had her transplant today. She also has JMML and is 2 door down from us on the ward. Just wait Kayli. You'll be where Luke is very soon. There are still many hurdles to jump. We pray that Luke will not develop any lifethreatening graft vs. host disease. On day +30, he will have a repeat bone marrow biopsy and blood tests to test for how much of his blood cells are from the donor vs his own. If leukemic cells are still prevalent, we may need to have the donor give lymphocytes which will be given to Luke to decrease the leukemia or rid it totally. We pray that this doesn't need to happen. Again, one day at a time. God has blessed us in so many ways already.

Thank you Debbie Phillips for the greeting card. Thanks Kevin Hoang for the card and gift. A belated thanks to the Heritage baptist church member who delivered the delicious pie. Thanks, to all those friends and colleagues who participated in the fund raiser dinner for us. You have done so much already. Thank you for all your hard work, prayers, and support. Happy birthday today to my mom who gives so much of herself to care for her first grandchild. Luke loves you, mom. Thanks Sue, Andy, Nicholas and Matthew for your continued encouragement. Kathy, I'll see you soon and will continue to pray for your dad. Joan, thank you also for all your support. And of course, Dana, Jim Delaney, Karen, Chris Russo, Niki, and so many others, thank you. I believe in the power of prayer and that God hears and responds. Lately, especially when I was sick, I felt a sense of peace from trusting in God--that whatever happens, as Sue said, it will be alright. I was worried about our financial situation last week but after praying felt that God would provide for us. I was worried about Luke beating his cancer. I have a sense after praying, though, that he will be all right. Thank you God. We continue to pray for Kayli, Cindy, Zachary, Brian, Joanne, Gooch, Nicole, Colby who are fighting JMML and other forms of leukemia. Remember, we are in this fight with you together. Months ago Luke had his picture in the paper. It was a wonderful closeup shot of him looking upwards. We have ordered this to be enlarged and will call it HOPE.

Sunday, April 7

Day +20:

I came to the hospital today at 10:30am. Sarah's mom came a little ealier to help out. No significant event last evening except that Luke's amphotericin b is now switch to fluconazole in preparation to switch to a medication that he can takes by mouth. His dopamine has also been stop.

WBC = 5.1 (NORMAL!!!!)
Hgb = 12.8 (NORMAL!!!)
Platelets = 27 (Low... Normal is 150-450)

It is absolutely amazing that Luke's WBC is normal. It's been almost doubling daily. He now has a NORMAL WBC count. His neutrophil count is above 1000. This means that his risks of certain infection for an immunocompromise person is dramatically decreased. It also means that he can leave isolation. He has to wear a special mask to leave his room. We had to cut the mask to make it fit his little face. It's the same mask that I wore during residency while on the pulmonary service where the exposure to air-born infection is high. It was amazing, Luke had no problem with wearing a mask! I guess he was happy to leave his room and walk around the ward. We took him down to the first floor where there is a large train set. He wanted to push all the buttons to make the traim make noises. We also took him for a short stroll in the atrium. This was Luke's adventure for the day. He has not been out of his room for nearly 4 weeks. Visitors are still discourage, especially anyone who is ill or has been exposed to anyone sick.

Luke's appetite is much much improved. He is drinking milk again. He is eating goldfish after goldfish crackers. He had some chow-mein noodles. He enjoyed the chow-mein so much. It made him smile to be able to enjoy food again, especially noodles and goldfish. It made his parents very happy as well... Our son is back to his normal self :-) It may be possible for us to leave the hospital in about a week if everything continues to go well. We would go to Ronal McDonal House or somewhere nearby. We have to be within 10 minutes of the hospital in case of any adverse events. This will be approximately for another 6 weeks... at least we won't be in the hospital in isolation.

The grace of God has smile upon us today. We are truly blessed for we have seen our son smile again...Thank you God and thank you everyone for all of your prayers.

Saturday, April 6

Day+19:

Saturday is my favorite day of the week. I get to exercise by playing basketball. Sarah and my dad came to relieve me this morning. Friday night was unventful (great). We played for about 3 hours. I went home to shower and have lunch with my mom and to hold Christina. She smile at me because she know that somehow we are related. I took her outside to say hello to our neighbor; one careful look and she started crying as she reconize stranger. Sorry Cindy... Give her time.

I went back to the hospital by 1:30pm to give Sarah a break. We all had a much need nap till about 4:30. Luke's WBC today is 2300 (INCREDIBLE & HORAY!!) and his platelet count is 30K without transfusion (y'day is was only 18K). His hemoglobin is holding steady. For the first time in I don't know how long, Luke was able to eat 2 crackers. Last night he had 2 sips of milk; none today. His rash (gvhd) continues to improve with the iv steroid (solumedrol). We think that he is getting some behavioral changes from the steroid. He is full of energy and at time very impatient. He wants us to cotinuously fast forward his video tapes. This started last pm and continues tonight as well (as per Sarah's report). By 11:30 pm of last night, I finally just turn of the video. He protest briefly then went to sleep. We are stopping the antibiotics today (vancomycin, ceftazidine, and gentamycin) as Luke no longers has fever and his counts are up. He continues on acyclovir (antiviral), and amphotericin b (antifungal) for now. He is also on FK506 for antirejection, renal dose dopamine to help increase kidney perfusion, low dose heparine to help prevent veno-occlusive disease, fentanyl pump for pain, Nubaine, benadryl, ativan for itch... (I think I got most of the meds)...

I took my dad home from the hospital and went out to a Luke Do's fundraising dinner. The dinner was put together by a few of my close physician friends. We had sushi (yum yum). Luke and our family want to thank EVERYONE (family, friends, colleagues) for being SO generous. Your kind hearts has truly touched us... After dinner, we went bowling (I haven't bowl since highschool or college many many yrs ago.) It was a blast just to get out... Again, a big THANK YOU to EVERYONE.

Well, it's 12:30am and I'm suppose to advance my clock another hour forward. So, goodnight.

Friday, April 5, 2002 Pacific time

Sarah and Lam need a journaling break, so this is Luke's Aunt Pearl filling in tonight.
After spending the past week with Sarah, Lam, Luke, and Christina, I will be flying back to Chicago tomorrow. I'm glad that I got to see Luke smile and laugh today. He's doing so much better now than several days ago. He's up watching videos and playing with his trains. He's full of energy and spirit. His white count was 1500 and his ANC was 540. His rash looks better although he's still itchy. I spent a difficult Wednesday with Luke--I filled in for Lam and Sarah (Lam worked, Sarah was sick). There were no smiles on Wednesday. Luke didn't even have the energy to cry. Luke was extremely weak, uncomfortable, and looked like he was in constant pain from horrible mouth sores, medicine side effects, etc. Auntie Pearl was liberal with the narcotics. It was heart-wrenching to see Luke in this condition. It must have been a very difficult week for Lam, who spent each night and several days tending to Luke. Sarah missed Luke a lot--a cold kept her away at this crucial time.
Luke's former baby-sitter, Mrs. Le, came to the hospital to help me out several times this week. She's a wonderful lady and cares deeply about Luke. He was very happy to see her. He doesn't know me well yet. Sarah is recovered from her cold and she spent the afternoon with Luke while Lam worked. Luke was happy to see his mom and he took a long nap laying on his mom's stomach.
I'll be checking in by Web cam once I get to Chicago. Keep posting messages to the guest book everyone. Each encouraging message gives Lam and Sarah a needed boost. I'm happy to see that people have been extremely generous and supportive. We are so grateful. Some of you probably care deeply but don't know how you can help.
Sarah and Lam are doing an incredible job caring for Luke. But I'm sure that a meal dropped off at the hospital every once in a while would be welcomed. Also, Lam's relatives could use rides to and from the hospital. Lam's cousin, Dung, has dropped off and picked up people at the hospital several times this week. That type of thing is helpful.
Also, friends can assist by making sure that Lam and Sarah get more breaks. The oncology ward is a not the most upbeat place to spend 24 plus hours. It's enormously stressful. If you want to help, you can come by and take Lam or Sarah out for coffee or encourage them to join you for a 30-minute walk to a nearby park. Perhaps Sarah might want to go to a nearby movie theater to escape for a few hours. Thanks everyone for everything you've done for my family.

Thursday, April 04, 2002 at 08:23 PM (CST)

Day +17:
Luke's WBC today is a WOPPING 700 with 50% neutrophil. This is GREAT news... Once the neutrophil goes above 500, Luke's risk of infections goes down and once the neutrophil is above 1000, the risk is even lower. Luke's rash continues to worsen, now a more diffuse red. It's most prominent on the cheeks, palms, soles and arms. It's essentially all over the whole body. We are in agreement with our teams of physicians that it is most likely GVHD (graft verses host disease). GVHD is both good and bad in patient with JMML disease. There is GVL (graft verses leukemia) effect in that the graft will see leukemic cells as foreign and will destroy them; therefore, lowering risk of recurrence. On the other hand, if GVHD goes out of control, the graft will destroy the host (ie, Luke). GVHD can be lethal. The usual organ systems to be affected includes the skin, gastrointestinal (GI) and liver. Thus far, Luke's liver test is improving and almost back to normal. He is not having diarrhea to suggest GI involvement. The only system affected is his skin. If GVHD is not control, all of Luke's skin can peel off like a whole body 3rd degree burn. It is a fine line that we are walking. We want enough GVL effect without having too much GVHD. We will start iv steroid tonight in order to start controlling the GVHD as Luke's rash continues to worsen. Luke's mucositis, mouth sores, continues to improves. I was able to remove several big gunk of dry blood and mucus from his mouth today. Luke wanted to eat and drink some fluids today; but, it still hurt too much for him to even try to swallow. Again, nothing went in today.

I remain nervous as Luke's GVHD worsen; yet, I am conforted by knowing that Luke's chance of recurrence is lessen with the GVL effect.

Thank you Vinh for the Pad-Thai noodles and your company at lunch. Thank you Pearl and grandpa for watching Luke while I visited with Vinh.

THANK YOU donor, whoever you are, you have given my son the gift of life and a chance of living. We are forever grateful for your most precious gift. Thank you donor, whoever you are for donating the umbilical cord blood for Cindy Nguyen (http://www.caringbridge.com/co/cindy) transplant yesterday. Also, a big thank you for the donor for Kayli's upcoming transplant (http://www.caringbridge.com/ca/kayli). I hope that people who follow our stories are inspire by these donor and will register with the national marrow donor program (http://www.nmdp.org) to be potential bone marrow donor. If you are having a baby, you may want to consider saving the umbilical cord blood. If not, please donate it for humanity; otherwise, it goes into the trash can. Donating umbilical cord blood may be more difficult as our nation has not yet have any funding for processing and storing of cord blood. You to can save a life by donating bone marrow or umbilical cord blood...

Lastly, we need to thank all of the doctors, nurses, and everyone involve in our care; especially all of our family members. This journey is not possible without you... Thank you from the bottom of our hearts.

Wednesday, April 3 22:00 PST

Day+16:
Last night ampho b went in without any reactions. This morning Luke's WBC is still 200, no change from yesterday. I had to leave Luke for work this morning. Aunt Pearl and Bac Huong stayed with Luke. No significant event happened. My day at work was a change from being in the hospital. I was somewhat fatigue as sleeping in the hospital is not such a great thing. After work, I went home for some dinner and held Christina. She is such a cutie... I was back with Luke by 6:45 PM tonight. It appears that his rash has worsen. They are a deeper red and more noticeable, es of the palms and soles. We are not yet sure whether this rash is GVHD or a drug reaction.

The ampho b went in tonight without much problem. Luke continues to be fatigue without any appetite and spends most of the day watching video tapes. I don't think he has the energy to do anything else.

Thank you all for all your supports and prayer.

Tuesday, April 02, 2002 at 09:38 PM (CST)

Day+15:
I relieve Peal and Bac Huong at about 7pm last night. Luke was ofcourse happy to see his papa. We spent the evening watching his video tapes. I enjoyed the NCAA final. Luke finished his ampho b at about 10:15pm. He was premedicated with tylenol, benadryl, and demerol. Luke finished his vancomycin infusion at about 11:30pm and started to be tachypneic (breathing fast). His hands were mottled and cool. His temperature went to 38.7C. By midnight, his temperature spiked to 38.9C (~101.8F). Luke was given tylenol to help his fever. At 1:30am Luke was given the blood transfusion. Earlier in the evening, Luke slept. He decided to stay up from about midnight to about 3AM. This was not much fun for dad. Today, Luke and I was still asleep when grandpa came to help. Luke did not leave the bed today to play with his train. He has not left the bed for a few days now. He has not eaten or drink anything also for a few days either.

While Luke was still cranky from trying to wake up, we were inform of some GREAT news. Luke's white blood cells (WBC) today is 200, double from his usual 100. This means that the new bone marrow is beginning to make new WBC, something we have been anxioustly waiting for the last 2 weeks. HORRAY!!!!! Now, for the not so good news. Because of last night fever, the team have decided to go up on the dosage of ampho b, to full dose. This is because his fever has been persistent, daily, and increasing. Also, we cannot take a chance that a fungal infection is brewing. If we hold off on the ampho b, a fungal infection untreated, can be lethal. Luke will receive a different type of ampho b, something call amphotericin b lysosome. The ampho b molecule is suspended in a lipid bilayer and form little lysosome or spheres and is suppose to have less side effects. Early this evening, I noted that Luke has a new rash on his lower back, legs and arms. They are small 1-3 mm little red dots; mostly, they are blanchable. They look like small cherry angiomas. I am concern that this may be the beginning of GVHD (graft verses host disease) or a drug reaction...

Another crisis happened tonight. At about 7 pm, while trying to unscrew the IV line from the large port, the tip of the iv line broke off and was wedge in the cap of the port. All sort of possibilities went through my mind. What would happen if we loose this line? What would happen if we contaminate the line trying to remove the broken tip? What if little pieces got into Luke's blood stream? They would be like little emboli, or projectile shooting through his vascular system... If we don't remove the broken tip off in a timely manner, the line would clot.... A different nurse was called to see if the situation could be fix. We tried unsuccessfully to remove the broken tip with a large tweeser, using the tip of the tweeser inside the broken tip's lumen and prying outward. Fortunately, with a sterile hemostat, the broken tip was able to be removed after some persistent attempts. Luke then received his platelets transfusion. The ampho b lysosome is being infuse currently. Its a light fluorescent yellow/green color; like regular gatorade or antifreeze. Luke is sleeping now and I must do the same as I have to work tomorrow.

GOOOOOOOOO Stem Cells!!!!!

Monday, April 01, 2002 at 10:59 PM (CST)

Day +14: Mom misses her little boy and of course misses Lam, too. It's been 4 days since I was allowed to enter the room due to my flu. Unfortunately, I can't enter until all symptoms are resolved. Luke's aunt Pearl came at just the right time to fill in. Also, Luke's old babysitter, Bac, is helping. Thanks to you guys. Without you, we'd have a big problem. Lam reports that Luke had an episode of unrelenting coughing then wheezing last nite and had to receive a treatment to open his breathing passages. He also received lasix since it was felt to be due to fluid overload. He also had a fever at that time for unknown reason. Pearl and the babysitter were with him today while Lam worked. Pearl states that he was very weak and had no energy to play. He had another fever tonite from unknown causes. The fevers from amphotericin have stopped after premeds were started. His white count is still 0.1. Platelets were 44,000 and hemoglobin l0.3. He will receive a blood transfusion tonite. The team feels that he is basically doing as well as expected at this point in the transplant journey. The usual course would be to expect some donor cells to be produced by the end of this week or beginning of next. When this occurs, he will begin to feel better with less pain, vomiting, increased appetite, etc. Let us all pray that this happens and that no major complications develop. I feel bad that I am unable to be there to comfort Luke at this worst time in the transplant process as well as to allow Lam some much needed time off. Lam never complains, just encourages me to get well soon. So, I'm doing all the regular stuff, rest, fluids, decongestants, cough medicines, and antibiotics for possible bronchitis. I had held off colds/flus for 6-8 weeks prior by taking mega doses of vitamin c but this one just couldn't be beat. It's great to be able to see Luke and Lam on webcam each nite. Thanks to Diane, my sister pearl's sister in law in Iowa for all the great books for Luke and for her husband Randy and his whole families support by their thoughts and prayers. Thanks to Sue, Andy, Nicholas,and Matthew for all those encouraging messages. Thanks again to Heritage baptist church for their prayers.

Something remarkable happened today. Luke's donor sent us a card saying "Wishing you all the best for a speedy recovery. Get well soon!" From Donor XXXX-XXXX-X To Luke Do XXX-XXX-X Thank you Donor XXXX-XXXX-X. I didn't know we could communicate via writing. We are blessed at the chance you have given Luke to live. We will be in touch. I heard a rumor that the donor was from Texas. It's interesting that Luke will acquire the donor's blood type in a few months. I wonder if he'll also speak with a texan drawl, crave steak and potatoes, and have a thing for rodeos.

Thanks Pastor Mike for leaving these verses when I was feeling particularly down. "Let not your heart be troubled: ye believe in God, believe also in me."John 14:1 and "But the Comforter, which is the Holy Ghost, whom the Father will send in my name, he shall teach you all things, and bring all things to your remembrance, whatsoever I have said unto you. Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid." John 14: 26-27.

Sunday, March 31, 2002 at 11:03 PM (CST)

Day+13:
Last evening was uneventful except for the one episode of fever and chills after the ampho b infusion. This morning Luke did not eat anything. He vomited four times; billious material and mucus. He did not eat lunch or dinner; nor did he had any milk. Aunt Pearl came today to help out since mom is still with cold symptoms. Drs. Ngoc Nguyen and Khanh Tran came to visit. They were able to view Luke from outside of his room. We spoke via the intercom mostly. It was nice to have them came visit; eventhough, Luke and I could not spend much time with them. This afternoon, Pearl and I gave Luke a bath and did his Hickman catheter dressing changes. Luke receive a platelets transfusion and some lasix (a diuretic) this afternoon.

No rigor (chills) or fever tonight :-) Its about 2 hrs after the "amphoterrible" infusion and Luke is sleeping comfortably. Because of the platelets transfusion, he was premedicated with tylenol, benadryl, and steroid. We took this opportunity to give the ampho B right afterward with all these premeds on board. He was also given some demerol premedication and the ampho B was infuse over 2 hrs tonight (instead of 1 hr). This combination worked. NO rigors, chills or fever now 2 hrs after the infusion. Luke is sleeping like a baby (well, actually, he is a baby).

We had the opportunity today to have a conference with all of my family in OKC (my 2 sisters and their families and my brother Thuy's family visiting from Virginia). This is the first time that I heard Thuy and Melissa children spoke. The conference was with everyone from OKC together with my 2 uncles' family and our babysitter family and 2 college friends. All at once. Amazing technology! All these people saw Luke and I was able to see and hear those with a web-cam and mic.

Tomorrow, I am back to work. Aunt Pearl, grandpa and our babysitter will take care of Luke while I am at work.

Thank you for the easter baskets and all of your prayers.

Goodnight...

Saturday, March 30, 2002 at 11:26 PM (CST)

Day+12:
I can't believe that we have been here 19 days. Saturday is my favorite day. I get to play b-ball in the morning and get to go home and see Christina and have lunch at home. We played for nearly 3 hrs and my team(s) lost every single game. The exercise was great. Mom has a cold and cannot come in the room right now. Grandmom and our babysitter came this morning to watch Luke. He protested and cry when I left. I could hear him from outside the door and wanted to go back in to stay with him; but, I knew I had to go and take my break. I would go nuts if it wasn't for my b-ball on Saturday morning. After the game, I went home and took a hot shower, held Christina for a short period and had lunch with my dad. Christina would look at me and smile beautifully. I must resemble her grandfather in facial features as she definately must not know that I am her father. I don't get to spend very much time with her. Her smile tells me that she knows that I am important and that I am friend to her. She is now 6 months and is such a wonderful little girl.

Luke's aunt Pearl came in from the Chicago area today for a week visit. Thanks for the wonderful chow mein and the Thomas The Tank Engine Trains and tapes. Luke especially like the green one.

Luke had another fever tonight. Approximately 1 hr after the "amphoterrible" infusion. "Amphoterrible" is what my chairman use to call ampho b in residency. It's because it has such horrific side effects. We gave Luke some tylenol as pre-medication before the amphoterrible dose; but, unfortunately, he vomited most of the dose. More cultures was done. The side effects start as a terrible, almost bed shaking, chills or rigors. This last for about 20 to 30 minutes and follows by fever. Tonight it was to 38.6 C or 101.4 F. Next came the rash or maybe just flushing from the fever. The rash/flushing is of the cheeks, whole back and some of the chest. Next came sweats, es of the head. By this point, Luke is totally exhausted and would fall asleep in my arms. I can see now why they call it "amphoterrible." It's suppose to be even worse in adults. Before tomorrow's dose, we will need to premedicate him much better.

For those of you who would like to see Luke, we usually broadcast on Yahoo Messenger between 7 and 9 pm PST.

Happy Easter everyone!

(:-)

Friday, March 29

Day +11:
Luke was given a platelets transfusion last night. Today was uneventful until early evening when Luke had another temperature to 38.6 C. The temperature came about 1 hr after the amphothericin infusion. This happened last night as well. Maybe it's the ampho. Anyhow, Luke got more blood cultures done. Luke continue not to eat or drink anything. The whole day, he had 2 oz of milk and vomited. If it wasn't for the TPN, artificial feeding, Luke would not be here I don't think. It's a good thing that we are in the US with the technology; else, there would be no chance of treating Luke's disease. We are thankful. Tomorrow, Luke's aunt will be visiting from Chicago. My parents are still here from Oklahoma City to help out and raise our daughter Christina Hope Do. She is now 6 months old and doing great. I can't believe that we have been here 18 days already; somehow, it doesn't seem that long...

I will go play B-ball in the morning and watch OU play Indiana in the afternoon.

Have a happy Easter everyone.

Thursday, March 28, 2002 at 11:06 PM (CST)

Day +10:
Last night was without nose bleeding. Luke had to wear mittens. Today Luke slept most of the day. He vomited a few times. Tonight, Luke spiked a new fever. Something we hope would not happen. New fever could mean infection, reaction to medication, inflammatory reaction to e.g. hepatitis, etc, etc. Infection is the most serious, es fungal. Luke is now getting "full dose" ampho B to fight any fungal infection. He is already on ceftaz and vanco antibiotic for bacterial infection. He is on acyclovir for antiviral. The doctors will add gent if things get worse. For those of you who are not in the medical field, it just mean more antibiotics and antifungal medications. Fever is something we dread; but, hopefully it will not be serious. Some tylenol brought the fever down readily. Blood cultures and chest x-ray was done. He is now watching many videos before going to sleep. Please continues to pray for Luke and that his fever is only temporarily and not serious. This fever reminds us that Luke still has no immune system and that although we would love to have many visitors, it's actually not a good thing until his new bone marrow starts to produce white blood cells to fight infections. Everyone, please get a web-cam. You can visit with us nightly between 7 and 9 pm PST. Even if you don't have a web-cam, you can still see us using yahoo messenger. Our id "lukegdo". Thank you for your understanding.

Wednesday, March 27

Day +9:
Another nose bleed this Am. More platelets transfusion today. Luke is also getting some blood transfusion tonight. Most of Luke's hair has fallen off. His head feel soft and smooth to the touch. He has premature balding; or actually, he looks like his grandfather.

Until tonight, Luke has not look like a boy with leukemia. It sadden us that he now looks sick. His mouth sores has worsen somewhat. He doesn't even drink milk now. Yet, he can still smile on occasion.

Thank you Cliff, Chantal, Fred and Nathan for bringing by dinner.

New pictures of Luke from tonight.

Tuesday, March 26

Day +8:
Last night was very eventful. Luke had another nose bleed. It took about 15 to 20 minutes of squeezing his nose with a cold compress before it stop. Have you ever try to hold a 2 yo kid nose for 15 minutes? Not easy, Luke is almost 30 lbs and fairly strong. He cries and fell asleep in the tri-pod position. He was given a platelets transfusion to prevent further bleeding (no reaction again, thank god). This morning, guess what, another nose bleed. Luke was not a happy camper. He was already grumpy from a bad night. Here goes his dad again squeezing his nose for another 20 minutes. This time, Luke was very uncooperative. There was blood everywhere on the bed and all over Luke and Dad. Eventually, it stop bleeding. He was given another transfusion of platelets; again, no reaction. I forgot to mention that during these nose bleed, Luke would swallow some, if not most of the blood; and guess what, it all eventually came back out. Not a pretty sight. I guess I have seen worse; eg, when an adult with cirrhosis and a variceal bleed or when I put down a Moss tube in someone with upper GI bleed. When it's your own kid's blood, somehow a small amount of nose bleed seem so severe. Reflecting back on these nose bleed, I guess, they are minor crisis that we overcome daily; like "stamping out little fires." After the nose bleed stop, Luke act as if nothing had ever happen and went over and play with his train sets. I did notice that he was more insecure and would hold on to me more tightly during sleep. Luke continues to gain more water weight. He has been started on renal dose dopamine and receive one dose of lasix today. Luke is loosing his hair rapidly. He definately has a positive "pull test." Luke's aunt (Pearl) told me that the bald look is fashionable currently.

Mom is with Luke tonight. I hope that it will not be eventful. Goodnight everyone.

Monday, March 25, 2002 at 09:31 PM (CST)

Day +7:
Luke had some slight nose bleed last night. Today his platelets were only 10K (normal is at least 100K). This meant that he needed a platelet transfusion; but, we needed to figure out how to prevent those terrible reactions. Luke needed the platelets to be aphoresed, packed and be premedicated with a higher dose of iv steroid, benadryl and tylenol. His transfusion was without any reaction today. HORAY!! More of Luke's hair continues to fall off. It's all over the pillow and on our T-shirt. Luke continues to have very severe mucositis, controll only with narcotics; he's on a fentanyl pump. It's amazing that he can still at time take some milk and a few cheerios; at other time, he can't even swallow his own saliva. He looks so peaceful napping right now. He will be up late tonight.

Sunday, March 24, 2002 at 10:40 PM (CST)

Day +5 & 6:
Yesterday was quite eventful. Luke had another nose bleed requiring platelets transfusion. Even with Tylenol, Benadryl, and steroid pre-medications, he still had a severe platelets reaction with whole body hives and swelling. The poor kid was so unconfortable. Dad had his usual Saturday Am off; unfortunately, it was raining and couldn't play hoop. He got together with Vinh, Anna, Gupta for a late lunch and watch half of the OU & Missouri b-ball game. When I got to he hospital, Luke's nose was still bleeding. We had to squeeze his nose with a cold compress for about 20 min before it stop bleeding. He slept until 8pm and did not go back to sleep unitl 1am. Today was less eventful. He play with his train sets and watch many video tapes. He only had one or two bites all day; only a few sips of milk. Luke had a bath tonight; against his will. He usually loves bath; but, since we came to the hospital, he no longer wants to take baths. Luke's hair is beginning to fall out. We had cut his hair to 1/4" before the admission so that when his hair fall out that he would not miss it much. Luke had only one episode of vomiting this morning. Sarah went to church this morning and had visitor from Vacaville today; her best friend Debbie Phillips and daughter Kimmie. They went to the Stanford mall and had a nice lunch. Thanks Debbie for the cookies, Thomas train and video and other gifts. Thank you Heather for helping out yesterday and giving Lam's dad a ride home from the hospital. Thank you Lin Ma for your generous gift to the Luke Do fund to help pay for the cost of typing donors. Thank you Joan A. for contacting the Einstein Alumni Association for fundraising efforts. Thank you Dr. Nicole Thai and Dr. Minh Tam Nguyen for all your help and supports. Thank you Dr. Kanh Tran and Dr. Thuy Hoang for covering for Lam while he is with Luke. Thank you everyone for all the birthday gifts, Luke really enjoy them a whole bunch.

Thank you everyone for everything. We are fortunate to have such wonderful support from everyone. We are truly greatful.

Friday March 22, 2002 PST

Day +4: Today was our sweet boy's 2nd birthday. Thanks for all the birthday wishes, emails, cards and gifts. Thanks to Josie Smith and family, Kim Thoa and Nhi, Terry Pham and her aunt, Kim P. for all the great gifts. Thanks to my mom for the gifts and balloons. Luke had a blast opening gifts and playing with them tonite. He had a great morning and was laughing, walking around the room and playing with his trains (of course). Thanks Dr. Dahl for the train conductor hat for Luke and Yuri for the video. Unfortunately, his platelets had already fallen to l6,000 today from around 50,000 yesterday and he had a small nosebleed. Luke has received steroids, tylenol and benadryl before any blood products since an allergic reaction to platelet transfusion several months prior. Today, by some error, the cortisone was not given prior to platelets and Luke had a severe allergic skin reaction and a mild respiratory reaction. He was given benadryl right away which helped him sleep and reduced the itching. He slept most of the day due to this. My tolerance for error is at 0 at this point. There have been a number of mistakes made since admission already, but this was the most severe. As a parent of a sick child, I have seen Luke suffer enough. He has been so weak that he wasn't able to walk, in so much pain that he was irritable, couldn't sit still, or cried incessantly, so lonely due to the isolation that he will cry and point at the door or the window. During this admission, the suffering has only increased. His reaction to medications has included daily vomiting, serum sickness with the most extensive and horrifying rash I've ever seen which left him itching his entire body for 4 days and just resolved yesterday, pain from mucositis or breakdown of the lining of the GI tract(mouth, throat, stomach and intestines) which makes it painful to eat, drink, swallow. And the side effects will only get worse over time with some of them being life threatening possibly. To have medical mistakes being made which did not have to happen and which lead to additional suffering in my little boy who has already tolerated so much is inexcusable. For you old timers who saw Network years ago, "I'm mad as hell, and I'm not going to take it anymore!" I'm sorry I didn't catch this mistake today.Luke's had so many transfusions, I felt that his premeds were standing orders. Lam and I have tried to be vigilant, but I guess we will have to be even more so. We are my child's advocates and his protectors. We are fighting this battle with him. Our role is to comfort him which means being there for him, showing we love him in any way we can--by hugging and kissing him, or playing with him, by rubbing his itchy spots when he has a rash, or patting his back when he's vomiting, by telling him over and over "Mom loves you, mom loves you". We can also help to minimize his discomfort in any way we can especially by making sure he is getting adequate pain control and medications for the itching or to prevent the vomiting. We are thankful for fentanyl and zofran. This journey is long and hard. My father was a WWII vet and would talk about being on the front lines in the fox holes fighting the enemy. I feel like we are in a similar situation. This is our tour of duty. The stress is constant. We always have to be vigilant. The future is uncertain. There are good and bad days. But, it is clear what we are fighting for. There is no ambiguity. We are fighting for the life of our son and we have hope for victory.

Thursday, March 21, 2002 at 09:26 PM (CST)

Day +3:
Some minor events to report today. Luke was playing and accidentally hit the corner of the bed and suffer a small cut of his lip. The bleeding was more than usual since his platelets is somewhat low. He also had a nose bleed that ooze most of the day. Thank god that it's not actively bleeding. His rash continues to slowly improve. His appetite is still poor. He continues on TPN feeding. With pain medication and a whole slew of other medication, Luke actually is doing fairly well. The wait continues.

Thank you Sue, Katie, and Nicholas from Heritage Baptist Church for bringing by the wonderful Thomas and Tonka balloons, the book and the cards from Nicholas' classmates. Thanks to his classmates. We've put the cards on the wall. Tomorrow is Luke's 2nd birthday and he will enjoy looking at the cards.

Go Sooners!

Wednesday, March 20, 2002

Day +2:
Sarah was in the hospital with Luke last night. This gave me the opportunity to go home for a good night sleep before I went to work today. Sarah did not have a restful night. Today, Luke had a signigicant nose bleed. His platelets was low and require that he receive a platelet transfusion. Luke's mucositis and mouth pain further worsen today. He is on a fentanyl pca pump. His rash continues to improves. He is now on artifical feeding directly into his venous system (TPN - total parenteral nutrition). He is still able to drink some milk. His appetite is definately down. Tonight, we spent most of the night watching Thomas the Tank Engine. We also spent alot of time on the internet with our web cam. My nephew from OKC, Gupta and his childrens from Hayward, and our baby sitter and family was able to see Luke up close. It is good that people close to Luke can still see him on camera; eventhough, Luke is not yet interested in the web cam. Two more days till Luke's 2nd birthday. Unfortunately, we will not be able to have any big celebration since Luke has no immune system yet. We will have a small party with just daddy, mommy and Luke.

Good night everyone. Thank you all for everything.

Tuesday, March 19, 2002 at 11:48 PM (CST)

Day +1: Luke looks a whole lot better today. His rash is much better as well as his mood. He's able to drink juice and milk as long as he receives fentanyl. Of course, mom and dad feel a lot better too. Luke is more than a little bit hyper and we can't tell if it's from fentanyl, nubain, or FK506 which is similar to cyclosporin and acts as an immunosuppressant. Luke is also receiving methotrexate tonite which will help prevent the graft vs. host disease. I remember learning about all these drugs in school but never thought I'd see the day where my own child would receive them. Luke has spent a lot of time out of bed today playing with his trains and train track. Thanks to Kim P. for the new toy piano. I also wish to thank MAVIN for all their great work in recruiting multiracial donors to the bone marrow registry. They had a national drive targeting a number of university campuses and signed up close to a l000. Luke's picture was on the flyer for the drives along with other multiracial children. Great work, folks. Thanks, Vinh for the great Japanese food for lunch. What is interesting that we've noted here in this isolation room, is that we have multitudes of people coming in: our team of physicians includes the attending, fellow, residents and interns and maybe medical students. There are cleaning personnel, dieticians, PT, speech, Recreation therapy, nurses and nursing assistants. We have a webcam set up which shows about a 3inch by 3inch picture of luke, lam and myself. Lam's parents, our workplace and some relatives are also hooked in so we can see our daughter at home and others. It's great and gives us comfort. We can also communicate via microphone or typing. We continue to be a bit obsessive about infections and apologize to those who have stopped by but haven't been able to come in. We've been told that the flu can kill. I can't count the number of times I wash my hands every day but they're already turning red. If Lam and I are both here which happens this Thursday, every Saturday, and Sunday and next Mon, Wed, Fri, one of us can leave the room to talk. Again, we appreciate all your supportive messages and help. Please continue to pray for Luke's healing and our strength. We've been told by our team that things will continue to get progressively worse in terms of reactions until about day +21. Please also pray for Cindy, Kayli, Zachary and Brian as well as Joanne and Nicole. Thanks for this verse Christina: "God is our refuge and strength, a very present help in trouble." Psalm 46:1.

Monday, March 18, 2002 at 11:47 PM (CST)

Day 0 or "T" Day: Well, Luke just finished the infusion of the life giving donor cells. They arrived by plane this afternoon and were hand carried by Dr. Amilon to our room at 6pm. They were in 2 bags and looked just like blood. The transfusion started at about 6:18pm and just finished. We thank the donor for giving Luke this true gift of life. No matter what happens we will always be grateful to you. The next several weeks will be anxiety provoking as we wait to see if the graft will take and develop new cells for luke. Luke will be experiencing the effects of radiation and chemotherapy for the next several weeks including fever, vomiting, mucositis, possible infection and other more serious complications. We are ready to continue this battle and win! Luke has had a difficult past 24 hours. He did well with the ATG until last nite after the infusion when he developed vomiting and a severe rash all over the body. He couldn't stop itching even with benadryl and atarax and premedication with methylprednisolone. Fortunately, he had a morphine pump going and was able to get some sleep which stopped his itching for a short time.He's somewhat better today but it will take several days to clear up completely.He was itching so much that I started itching. My father in law and I spent most of the day rubbing his body with lotion to sooth his itching. He also started to develop mouth sores and didn't eat anything today but took some milk tonite.Even with all this going on, Luke didn't cry once today. He's a real trooper. Thanks to Cory for the pasta and garlic bread she made and thanks to all of you for your prayers.Thank you South Bay Triathlon team for the great card and all your work. Thanks Nicole and family for stopping by. I guess Lam thought I was journaling yesterday and vice versa. I can't believe I failed to mention meeting the Jankowski's on Friday-Jennie, Nathan, and little Kayli who also has JMML, were inpatient for treatment of an infection. It was great to finally meet these guys whom we've been in touch with over the past few months. We'll see them in the BMT unit in a few weeks. I'm glad to hear also that Cindy with JMML in Colorado is doing better and got a chance to go home. We will all continue our fight to beat this disease. As I've said before, the only chance for cure with JMML is by bone marrow transplant. There is no remission with chemotherapy as in other types of leukemia. Thank you again, dear donor, for your sacrifice. I pray that you had no pain from the procedure and will be back to your old self quickly. Bless you for your gift.

Saturday, March 16, 2002 at 09:04 PM (CST)

Day -2 and counting! One more day til "T" day. Luke continues in the battle of his life and for his life. He is holding up better today to the ATG(antithymocyte globulin) and cyclophosphamide. He had itching last nite and received atarax as well as vomiting. No vomiting so far today. No hives either. An extra dose of benadryl was given midway through the ATG. He had a few low grade fevers so Vancomycin and Ceftazidime antibiotics were added. He's already on low dose acyclovir to prevent viral infection and amphotericin B to prevent fungal infections as well as low dose heparin to prevent venoocclusive disease. He's still not eating much-one bite of orange and one potatoe chip but drinks lots of milk. TPN or IV feeding starts Monday. This am his face looked swollen but came back to normal as the day progressed. He has a radiation "burn" patches of dry, brownish skin scattered through the body. Still has all his hair!He's on a special bone marrow transplant diet-low microbial- so he can't eat anything not from the hospital kitchen or prepackaged. Daddy had his therapy this am--basketball then went home and saw the folks and Christina Hope, then made a trip to Toys R Us. Luke has the addition of "James" of the Thomas the tank engine series as of today. Daddy also bought 2 hot wheels tracks. I want to thank all of you for your messages and thoughtfulness which keep us in the spirit. Thank you to all of those praying for us from across the country and for having your churches or synagogues or other places of worship pray for us also. Thanks to Pastor Mike for coming to the hospital and praying with us in the recovery room after radiation.Thanks also to Cory and Christina who came by a few days ago and brought cards, food and a very large stuffed animal duckling which is the room mascot. It sits on the top shelf facing Luke's bed. Thanks Daisy and Nathan who brought a book called "the Promise book" which has different scripture listed in categories such as comfort, courage and trust-some of the categories I will check out. They also brought munchies and flowers. Unfortunately, the flowers had to be placed on the patio since there is the fear of fungi growth from them, but I'm sure other patients will enjoy them. Thanks to Sue Haynes-Douglas, her son Matthew, and her mom,Eiko Haynes, for coming by and the great easter basket!Sue and her mother have been a great support for me through this time. Thanks to Linda M. for the books on tape and books and Viet and Linda for lending all those DVDs. And thanks to my in-laws for their great care of Hope and to my father in law for helping Lam on the days I was at work. Thanks Dung for taking my father in law to and from the hospital.What's been tough for me is the fatigue. Lam seems to be his usual "energizer bunny rabbit" self which I'm sure all of you who know him have recognized. I, on the other hand, feel sluggish if I miss an hour of sleep. Unfortunately, every time I want to catch a nap i.e. when Luke naps, I find myself wide awake, due to stress or anxiety or noise or caffeine. Right now, I feel like I've been on call for a week. I know that Lam's sleep deficit will also catch up with him and I think he and I will need to get more organized to give each other breaks for rest. I must say that I admire Lam's strength, patience, and stamina in the face of adversity. He shows "grace under pressure". A few things I wanted to mention: if you know anyone who has a chronic illness, is at bedrest, etc., tell them about the caringbridge website. It is a free website which you can start. They can go to any website such as ours and look under the service info section which tells how to start the website. It's been a wonderful support for us. Also, for those who know or have a child with leukemia, a great book is Nancy Keene's Childhood Leukemia which tells just about everything about leukemia and gives excerpts from parents and childrens experiences through every phase of the leukemia experience. A great resource. Lam and I are frequently asked how do we do it? How do we deal with a child with a terrible disease and a poor prognosis? I remember those days when if Luke had a cold I would be upset. How can we deal with something so much worse? Well, there are a lot of supports that keep us standing. We are closer to God and God has given us the most support. We can turn to him at any time. When I feel I can't bear it, I pray to him for peace and the ability to take the situation. He always blesses me with a phonecall or visit or some other act of kindness from someone which keeps me going. I know he is here for us. We have also grown closer to friends and family. We have reached out to old friends that we weren't in good touch with and made new friends.We realize the importance of people and not things. I hope that we continue to grow through this experience. We must also look, as I've said before, at the wonderful things a child can teach us-about love, about joy, and about courage.

Friday, March 15, 2002 at 08:40 PM (CST)

Day -3:
No problem last night with vomiting; though, Luke did not ate much for dinner. He slept fairly well, taking up most of the hospital bed. Dad is pushed against the right side rail. Today started with blood draws in the wee hours of the night. This was followed by a blood transfusion to keep his reb blood cell count in a more normal range. We started ATG (Anti-Thymocyte Globulins) early in the day. The infusion went in over 8 hrs without problem. About an hour later, Luke broke out in severe hives. Thank god that we were able to controll it with benadryl. Luke is to get Cytoxan, a chemo agent, tonight. We hope he wakes up from the benadryl soon so that we can give him a bath. Luke loves to takes baths.

Thursday, March 14, 2002 at 11:02 PM (CST)

Day -4:
As I type this, Luke is still asleep next to me. We just completed our last day of radiation treatment. The morning session went without any problem. This afternoon, after arriving at the department, we were informed that there was technical difficulty with the radiation machine. We went back to our room and waited. This just delay Luke from getting any food even longer. Finally, we were call down at 5:30 to get the last treatment. Luke did not get back to his room until about 7 pm and did not wake up until about 9 pm. He took one small bite of brocolli, one bite of fruit cocktail, one sip of oj and 8 oz of milk. That's it, he refuse to eat anything else. I tried cookies, other sweets, without success. I guess, if we had 8 radiation treatments, we wouldn't have much of an appetite either. I forgot to mention that all of last night dinner came back up at 10 pm. He was able to keep down some milk before falling asleep. Luke's skin feel warm to touch because of the radiation treatment, like a sunburn. Yet, he is still in good spirit and still smile beautifully. He still has all his hair for now; cut 1/4" short. He is now watching Thomas again. I'm watching march madness. Tomorrow and the two days after, we will be getting chemo to wipe out the rest of the bone marrow and immune system. Monday, day 0, Luke will get the new bone marrow.

We want to thanks members of Heritage Baptist Church personally for visiting and bringing goodies for Luke; and es, for all of your prayers. I want to thank the mother of "Jack" for the cup of coffee and the rosarie that she gave to Luke today. "The kindness of stranger" has really been a pleasant surprise for us during these diffult last few months. We cannot thank everyone enough.

I will try to upload some new pictures of Luke taken today.

Wednesday, March 13, 2002 at 09:41 PM (CST)

Day -5, one more day of radiation treatment to go. It sound like we are counting down to a space shuttle launch. In a way, it is almost as complicated; though, the climax will not be as spectacular. The transplant itself will be like a blood transfusion. In another way, the transplant is just as miraculous and spectacular as a space shuttle launch. It is a miracle that Luke found an unrelated donor; given his mixed heritage background. It is a miracle that stems cells from a person who we have never met can be infuse into Luke and can cure him of his leukemia. This is a miracle that we have the technology to possibly cure leukemia. This potential is truly spectacular just as much as a space shuttle launch.

Today's treatment went fairly well without much problem. Last PM, all of Luke's dinner came back out. This is a side effect of the radiation treatment. It sadden me because this was his only meal of the day. He had a good dinner tonight and we hope that he will keep it down.

Thank you all family and friends and all of your prayers and thoughts. We are touched by all of you.

Tuesday, March 12, 2002 at 10:25 PM (CST)

Day -6: I didn't realize that we had minus days to go through before we could start counting towards the 100 days. Luke amazes us.He's holding up well. Lam stayed with him today, while I was at work with his dad to help. It's basically a two person job watching Luke in the hospital. Can you imagine leaving for a minute to go to the bathroom and coming back with the Hickman catheter in his chest pulled out? No thank you. We know Luke will be losing his hair very soon. On Sunday, we cut it extra short so that it wouldn't be such a dramatic event when it started falling out. He really will be my little bald eagle. I think the hardest parts so far have been when we were leaving yesterday am at 6 and my mom started crying as we were pulling away. And when they give Luke the IV anesthetic and his bright eyes become cloudy and his head starts to lag and they take him away from us; you feel so helpless leaving him but know it's for his good. And when you see the sign over the radiation room door light up and say "Room in use" and know that Luke is being zapped with the radiation that is killing "the good and bad cells". I try to concentrate on thinking about those leukemic cells getting zapped!It's also tough when he points to the door and you know he wants to leave but know that he can't for 4-6 weeks.I wish we could explain. At the end of the day, he is still smiling. We were told yesterday that the worst times will be about day 7-21. (transplant day is called day 0). We are continually amazed at people's kindness, even people we don't know very well. I must echo Lam's thanks to all of you for your support and encouragement which helps us keep going. I'm sorry if we can't respond back to all your messages but we appreciate them all. I will say a special thanks to Judy McMahon from the team in training. Yesterday, at dinner time Luke's tray arrived-macaroni and cheese and green beans--not enough for 3 of us especially since Luke had an appetite after not eating for 24 hours due to the radiation schedule. I rushed to the cafeteria but it had just closed, so I went to the machines-reminded me of college days finals week. Got a bologna sandwich and burrito. Lam was less than thrilled since he had asked me to get him a big plate of something like spaghetti and was licking his chops. When I got home(Lam stayed the nite) on the table was a huge tray of lasagna, salad, dressing, croutons, and wine as well as chocolate chip cookies. No more machines for us at least for most of the week. She also brought her sons old train track set and videos which Luke will love. Thanks again. Thank you Jung(spelling) for taking Lam's dad back and forth from Stanford today. If any kids (or adults) would like to help us decorate Luke's room, please just draw a picture or send a message-if you'd like to mail it the address is below. Unfortunately, only 2-3 people besides Lam and myself can come in the room throughout this period but people are welcome to wave through the window and Lam and I can come out and talk. Again, one thing you can do to help is register on the bone marrow registry--if Luke didn't have this donor, he would not even have the chance for life that he now has. We thank the donor and hope we can one day meet him. Again, anyone l/4 or more from a minority group can register for free (it amazes me that caucasians have to pay a fee of $73 to volunteer to donate to be on the registry). In San Jose the satellite office is on North 1st street. To make an appointment, call 510-594-5148 or 5147. Sometimes the red cross gets extra funds to pay for caucasians to register. If you call that number, you can also get the locations for any red cross donor drives around here. Do it for Luke, Kayli, Cindy, Zachary, and Brian. Do it for Louie, Nicole, Kayli Rossett, Luke Y. Do it for your brother, your mom, your girlfriend, or your son. You never know who may get this disease. Do it for yourself.

Monday, March 11, 2002 at 11:19 PM (CST)

Day -7, our first day of radiation treatment. We were at the hospital by 6:30 AM. Luke was sedated with medication so that he would not move during the treatment. Our first treatment was at about 8 AM. We then went to the recovery room for Luke to wake up from the anesthesia. Luke vomited a couple of time this morning. Our second treatment was at 3 PM. No solid food or milk for 6 hrs before a treatment and no clear liquids for 3 hrs before a treatment; ie, only dinner today for Luke. The hardest part is not giving Luke milk, since this is his favorite food. The same process starts again tomorrow at 7:30 AM. Tonight was good for Luke, he had a few bite of macaroni and cheese, some gold fish, and some raisin bread. He watch lots of Thomas the Tank Engine and is now snoozing away.

We want to thank EVERYONE for your prayer, for leaving us encouraging messages in our guest book, and for all the e-mail as well.

Good Night.

Sunday, March 10, 2002 at 10:53 PM (CST)

This is it! The last nite of freedom for Luke for several weeks. He saw a lot of people this weekend. We had a mini birthday party since his birthday will be on 3/22 when he's in the hospital. My friend, Kathy, who's son Chip has the same birthday, will try to come up that day to celebrate with Luke and some other surprises are in store. Luke continues to look wonderful. It is hard to imagine that he has such an aggressive destructive disease in his body when he looks so great. He seems most happy when mom and dad are with him. We were sitting on the bed next to him and he would look back and forth from one of us to the other with a huge smile on his face. Then we would smile and laugh and he would laugh. Of course we're in the midst of packing at the last minute. We're bringing all the Thomas the tank engine, sesame street and little bear tapes, selected books and a few other favorites like his play piano. I'm sure the collection will grow and grow as time goes by. I want to thank the other Team in Training members Lynn Brown, Judy McMahon and Michelle and Kevin Richardson for all your support. The fact that children die from a cancer such as leukemia is unacceptable, especially in this disease which strikes those less than 5. Those dollars you are raising will lead to the research which finds a cure. Thank you. Thank you Heritage Baptist church for all your unending support and prayers. We will continue to keep you up to date on Luke's condition.

Thursday, March 07, 2002 at 08:50 PM (CST)

We got the greenlight today for Luke's admission on Monday, March 11. He will begin his "100 days" of the transplant journey which includes the 6 weeks average inpatient stay followed by 6 weeks of living within l0 minutes of the hospital. I've been in a kind of overwhelmed, half depressed, paralyzed state this week--I know the transplant is necessary as the only possible chance for a cure of his disease but at the same time Lam and my instincts as parents are to protect our child from pain and discomfort. It is likely that Luke will suffer some degree
of pain. I just pray that it is minimal and that we keep in mind the hope for a cure at the end of the tunnel. We saw the whole team today, Drs. Dahl, Agarwahl, Pillai, and BMT coordinator Lisa Pinner. I felt reassured at the meeting. It's obvious that they practice medicine as an art and not as a bunch of formulas to follow for different diseases. For any of the complications that may develop, they have an antidote up their sleeve, even some experimental ones. They are of course very knowledgeable in their fields and have years of experience behind them.
Luke's counts were all fine today and he looked great! His liver enzymes have returned to normal. He will have his first radiation at 8am on Monday and be admitted to 2North afterwards. Lam and I will be alternating several weeks of vacation time and work. I'm starting to come down with the flu now and am trying to fight it off with rest, fluids and Vit. C and at the same time stay away from Luke. I pray he doesn't get sick this weekend.
Thanks to the Leukemia and Lymphoma Society's Team in Training and Kari and Peter for signing the guestbook. I was also happy to see Kayli's Aunt Sani and Glenn Mayor on the guestbook. Thanks to Pearl, Mom, Caroline, Lam's Mom and Dad, Nicole's family again and again and to Uncle Lich's family. Thank you Irene for giving the gift of the massage which was the first I ever had but not the last! Thanks Linda for the audiotapes you're sending--what a great idea--I can listen and play with Luke at the same time! Thanks Kathy for your calls and I'm looking forward to seeing you this weekend! Thanks Dana for all the info and support. Thank you Marybeth, my cousin in Yountville, for the great books, toys and clothes. Thanks Melissa for the new Thomas tape which Luke has already watched twice and the Thomas storybook. If I've missed anyone, just wait, I'll remember! I'm very happy to hear that the team in training will start visiting children's wards in hospitals. You all are awesome!
If anyone wishes to donate to the bone marrow registry, Joanne Pang's website www.joannepang.org, has recently listed all the local donor drives. You can check the website. The upcoming drives are S.F. State 3/12-13, Quad, 10-2; UC Santa Cruz, bookstore, 3/25-26 11-3; Fellowship Bible Church, 2710 Ralston, Belmont on 4/7 9:30-2; and on 4/20-21 Cherry Blossom Festival, Stevens Creek Blvd, Memorial Park, Cupertino 11-4. Any questions call Asian American donor program at 800-593-6667. I'm happy that Joanne Pang has a 5/6 donor and will go to transplant soon. Cindy with JMML in Denver is doing better after chemo and going to transplant soon and of course, we'll see the Jankowski's very soon at Stanford. We know that God will help us with this "trial of our lives" as Pastor Mike of Heritage Baptist says. We will continue to trust in him.

Monday, March 04, 2002 at 10:20 PM (CST)

One week to go! Our anxiety level is building up. We know that the mortality(death)rate from transplant itself is 10% although we've seen numbers of up to 20%. This includes failure for the marrow to engraft and grow, infections during the immunosuppressed period, liver failure. The radiation acute and chronic side effects were clearly spelled out to us by the radiation oncology team: Acute: fatigue, low energy, nausea, vomiting, diarrhea, bladder irritation, mouth and throat irritation, and hair loss. Chronic: sterility, increased risk of hypothyroidism, risk of learning disabilities, dental problems, delayed or decreased growth, lung damage, increased risk for cataracts, delayed puberty,secondary malignancy, venoocclusive disease leading to liver failure, renal damage, small bowel obstruction, and coronary artery disease. WOW! and that's not even talking about the side effects of the chemotherapy! People have different reactions to stress: for me--I eat.After the above discussion, I believe I ate a box of chocolates. I've asked my family to hide any sweets in the house, but I always manage to find them. As you can imagine, I've grown exponentially in the past 6 months. Luke on the other hand who used to eat everything on his and everyone else's plate is hardly eating at all. He will likely need a feeding tube in next week anyway but we wanted to keep his nutritional state up for him to be strong going into the transplant. He still looks good clinically, though. We're adding vitamins to his milk which is about all he will drink/eat. We go to clinic in a few days to confirm the admit date and go over final questions. For the past 2 weeks the big discussion has been over whether to use radiation/chemotherapy as prescribed in the U.S. protocol vs. only chemotherapy as in the European protocol. After review of info and discussions with physicians in both protocols, we are left with a questionmark still. The numbers from the European studies are too small to definitively say their protocol is superior to the U.S. I believe we will go with the U.S. protocol regimen of radiation/chemo prior to transplant because it is recommended by our team and the head of the u.s. protocol who are aware of the european results. There is a lot of uncertainty in treatment of this disease since treatment is still in the pioneering stages. I wish it were l0 years down the line. On the other hand, if it were l0 years ago, the outlook would be dismal. The relapse rate we have been quoted with the old treatments used with a 5/6 donor is 75-80% which took my breath away when I first heard it. We remain optimistic that the treatment Luke is receiving now is superior to prior. We continue to pray for Kayli, Cindy, Zachary, and Brian. Luke's roommate with AML, Hector, we heard was in the ICu last week with low blood pressure. We have been praying for him also. If anyone ever wonders about what they can do with their time to make themselves and someone feel better, go visit a children's oncology ward--bring food, books, videos, or just talk to the kids and parents. Or ask to become a volunteer. 2North at Packard would be one place to start. One gentleman every few weeks comes at lunch and plays the guitar near the nursing station there which delights everyone. We continue to pray for strength for all the parents and children struggling with this disease.

Friday, March 01, 2002 at 10:37 PM (CST)

Please take a look at the new set of pictures in the photo album--these are from the past few months. Luke continues to do well. We had a scare on Wednesday. Luke's cough had worsened and he was having audible wheezing. We were concerned about bronchitis or pneumonia. We gave him nebulizer treatments that nite and by am he was looking and sounding a lot better. His chest xray on Thursday was normal. His cough seems to be improving. His appetite is still strange--he only eats a bit of rice but wants to drink tons of milk every day. I don't know if this is due to his cold, the chemo, or the leukemia. His numbers are looking better--WBC is 2.0(normal is 5-16). We're still waiting on the ANC. Platelets are 368-normal, hemoglobin is 9.8(normal is l0.5-14.0. His liver enzymes are a bit abnormal AST/ALT 6l/73 and I hope they aren't trending upward like before. We don't want anything getting in the way of his transplant. It was delayed until 3/11 due to the donor first having sinusitis, then Luke needing more chemo, and now the donor is on vacation. I just hope that his idea of a vacation isn't climbing Mt. Everest or sky diving! Please keep praying that the donor and Luke stay well enough to go to transplant. I recently found out about the Leukemia and Lymphoma Society's Team in Training program. Basically, people participate in a number of competititive sports events. In exchange for endurance training, the participants raise money for the leukemia and lymphoma society. About l0% of the participants have been affected in some way by leukemia-self, friend, family. Honorees are those with leukemia who are in remission, cured or in treatment. We asked that Luke be one of the honorees. The team will give Luke support in many ways. We can also partipate if we'd like(don't laugh too hard--those of you who know us!) or go to their competitions, training, or social events. We met the duathlon/triathlon team last nite at Deanza College including Janelle Nelson, and Kathryn Hautanen. There were close to a hundred there. It was truly inspiring for us to meet this wonderful group of people. Lam gave a brief introductory speech on Luke. Luke surprisingly stood in front of this crowd during Lam's speech just staring at them. He's been rather shy lately, so this surprised me. The rest of the time he spent running on the track-toddler in training. Thank you team in training for your support. For other leukemia patients interested in becoming honorees, contact your local Leukemia and Lymphoma Society and ask about the Team in Training program.
I want to again thank all of those who are being so helpful including Linda, Debbie, Kathy, Irene, Lan, Julia F. Aunt Lin and Uncle Lich and their family. Our inlaws who were planning to return to OKC will be staying to help during the transplant. We are deeply indebted to them for giving up their lives, friends and family and being home sweet home to help us out.

Monday, February 25, 2002 at 11:22 PM (CST)

Luke is looking well although he has had one episode of vomiting in each of the last 4 days and his appetite has decreased. He mostly wants to drink milk. He still has a cold with cough and runny nose. He remains a bundle of energy running around the house. The weather has been so beautiful that he's been able to go outside and even play with the neighbor kids like he did all last summer. He especially likes riding the wagon with one of the other kids. Luke is now totally obsessed with Thomas the tank engine. Elmo has quickly become second fiddle. My mom suggested we take him on an Amtrak ride and I was thinking about going early ahead of Luke and painting big eyes on the train like Thomas!In one Thomas video, there is a ghost story. Luke becomes scared during this part and grabs me or his dad's hand and leads us to another room until this part is over. He began crying during a Lion King video his grandma gave him so we will be screening all his videos for scary parts. His white count has recovered to where he can be around people again thank goodness. It was hard for Lam, who is an internist, when he was neutropenic. It was tempting to tell the patients who called saying they needed to see the doctor because they were sick, that the doctor couldn't see them because they were sick. I'm joking but we were all a bit paranoid about germs when he was neutropenic. Luke and I had one of our "moments" the other day. The weather was bright and sunny and we went in the backyard and sat on the swing. He was sitting on my lap facing me and a soft warm breeze was blowing. He and I were both happy and smiling. These are the moments I would love to freezeframe in my mind forever. We realize that he is our gift from god and that no matter how much time he has on earth, we will try to make the most of each moment here. We have a fighting spirit and I know that a fighting attitude can help one overcome illness. In the beginning I was depressed and too scared to read further about his disease since his prognosis was so dismal. But now, Lam and I are trying to keep abreast of the latest research in his disease. There are a few potential drug therapies in research as well as other protocols. We and his doctors will do everything we can to fight this disease. Right now, the JMML team we know of consists of Zachary and Brian who are the veterans and have already been through transplant and are doing well, and Luke, Kayli, and Cindy who have impending transplants. We are all together fighting JMML and with the help of God will win the fight. Please continue to pray for us. Lam and I will be putting together a schedule where we'd like to ask people to come to the hospital to visit. During these visits, one or both of us would love to go out of the hospital for a bite, a java jolt, or even a beer. It's important for us to keep upbeat so that we can give Luke the best care. Also, if you have any ideas to entertain a 2 year old or any videos, books, etc. a two year old might enjoy, let us know. If you can save up your car and sports magazines for Lam to read and gossip magazines or mystery novels for me to read, we'd be appreciative.

Saturday February 23, 2002 12:04 AM CST

Sorry about the gap in journaling. It's been a busy week. Our transplant date is again pushed back and we're scheduled for admit on 3/11/02. Luke's had a viral infection with cough this week. Thank goodness, no fever. His eye problem has resolved--most likely he had an abrasion of the right eye. He's had a transfusion of platelets and blood this week and feels better now. He continues to eat well. We're looking forward to seeing Kayli and her family at Stanford. Kayli has JMML also and will be admitted for transplant the week after Luke.

Monday February 18, 2002 10:17 PM CST

Luke continues to do well. We had a little scare yesterday. He developed sensitivity to light to the point where he wasn't able to open his eyes in bright light. We didn't notice any signs of infection but brought him in to see Lam's buddy Dr. Gupta Etwaru who was gracious enough to see him last nite. Of course, the exam was difficult but Luke had no obvious abnormality except for a possible corneal abrasion on the right. Again, I wanted to say thanks to Gupta and Cherry. Gupta actually donated a Lasik procedure as one of the door prizes to one of the donor drives for Luke. Cherry and Gupta have been at the hospital and brought food, gifts, etc. Most appreciated was their company and support. Also Vinh and Anna the same. Of course my sister Pearl who was here as my labor coach and support in the first few weeks of this experience and has worked from her home in Chicago to help us and Luke in any way she can. Lam's brother Thuy, a naval officer recruited half his ship as donors. Lam's family including his parents of course, his sister Mai and Scott, Ha, and Cookie and Lam have also helped us by coming all the way here from OKC and Baltimore for support, to spend time helping in the hospital and to run the so many different errands necessary to keep the household going. They also, rearranged the whole house to where it was comfortable when Luke returned home from his initial stay. We can never say thanks enough.
Luke's chemo including accutane can dry out the eyes and can cause conjunctivitis. We are using artificial tears now. He is looking more pale. Blood draws today showed a mildly decreased Hemoglobin to 8 from 8.7 on Friday. Platelets are also decreased to 98 and white count to .9. He is now immunosuppressed. He'll likely need a transfusion sometime this week. Well, we finally scheduled a family portrait for this Wednesday nite which will be our first. We're also counting down the days to transplant likely 2 weeks.
For all the JMML parents, the new drug coming out soon for JMML is E21R. I will try to find out what phase of trials it is in and when it's available in the U.S. Dana Doctor also found out about a drug called PI88 also found to be helpful in JMML. We'll try to find out more about any trials in this country. These will be something to fall back on if relapse after transplant occurs. Lam and I are still awaiting the typing of the l6 in Japan who weren't earlier known about. I'm wondering if this delay in transplant was part of God's work to give us more time with Luke. Manjula at the hospital taught me to try to live in the moment and not always in the future or past as I have. It takes a while to train oneself to do this and I'm still not there but it makes life a lot more meaningful. When I'm sitting with Luke playing with his trains, instead of my mind wandering to appointments this week, or how far behind I'm at work, if I just look at this moment and Luke's smile and obvious delight at playing with Mom and his trains then I am happy in that moment also. Manjula taught me how much I can learn from Luke. As in all children, his emotions are written all over his face. He delights in the simplest of things. I want to share in his delight and remember how I used to feel the same. He lives in the moment. Yesterday, he had a great time with his friends from next door, Sarah and Jacob, 6 and 3. He was content just sitting next to them watching them play. It was obvious they missed each other since it's been some time since they played.

Saturday February 16, 2002 1:54 PM CST

Thank goodness for chemotherapy! Luke is looking like his old self again--bouncing off the walls and doing great. His appetite is becoming ferocious as though to make up for lost time(food). He ate 3 meals this morning alone. We are trying hard to get Christina and him to get to know each other and he is a bit more friendly with her. Luke had a blood draw yesterday and his WBC count is in the 2 range with the ANC about l600(when it gets below 500, he is at increased risk for infection). I believe that today or tomorrow his ANC will likely be <500. His platelet count is around l20 after his transfusion on Wednesday. His hemoglobin is 8.7 (normal starts at l0.5). He's a bit pale but still high energy. No signs of infection. Unfortunately, I seem to be picking up a bug and am trying to fight it off with Vitamin C but fear I'm losing the fight. As with all parents with immunosuppressed kids, this is a major issue and it's hard especially since stress decreases immunity. I will likely start an exercise program which will help build up immunity also. Luke can still go out but not to public places. He can't be exposed to anyone sick. We have been fortunate so far in that he's never had to go to the hospital for an infection. We'll pray that this continues. Transplant is likely in 2-3 weeks. Please also pray for Cindy in Denver with new diagnosis of JMML who is rapidly progressing and will likely need a transplant in a few weeks. Also, I heard that Joanne Pang's donor may have a problem and they may not be able to use the donor. She is in great need of an immediate transplant. I pray that God will help with an adequate donor for her and to give the parents of Joanne and Cindy strength at this trying time. Thanks to my sister Caroline and Mom for helping out at home, with shopping and at the hospital and going to those weekly or more appointments at Stanford. Thanks to my brothers for helping with housework and to Jack for lending us his laptop. I also wanted to thank the Vietnamese community here in San jose in particular the following people for putting together the drive for Luke in November which got 250 people registered: Dr. Ngoc Nguyen, Dr. Khanh Tran, Dr. Thuy Hoang, Dr. and Mrs. Huy Trinh, Dr. and Mrs. John Lien, Dr. and Mrs. Huy Nguyen, Dr. and Mrs. Karl Nguyen, Dr. and Mrs. Vinh Nguyen and the many others who participated as well as AADP for doing the blood draws. These people stuffed flyers in l0,000 newspapers, told their patients by word of mouth and hanging up flyers, advertised on the radio, etc. It was an amazing event and we are so thankful for their help. Of course I'd also like to thank Dr. and Mrs. Chris Vu, Dr. Linda Ha and Viet Nguyen, and Dr. Thang Tran and his wife Rosalie. Also Edna McVey, Mary Levendos and others who mobilized the people at VMC in December and put together the drive that had l00 register. We know all this took immense effort and appreciate all your concern and work. Bless you all.

Wednesday February 13, 2002 11:24 PM CST

Home sweet home! Poor Luke is still vomiting from the chemo and his balance is off but we expect this to clear up by tomorrow. His platelets were 22,000 today so he received a transfusion. His white count dropped to 4000 so we expect he will be neutropenic tomorrow or the day after. In general, he is definitely feeling a lot better than when he was admitted. We will now wait for his counts to start to recover and be readmitted for transplant. If anyone has any ideas for keeping Luke entertained during his 6 weeks in the hospital and in Palo Alto, please leave a message.

Tuesday February 12, 2002 11:08 PM CST

Happy New Year and Happy Mardi Gras! Yes, we're still in the hospital. Luke had a rough first few days with vomiting and fevers up to l04 from the chemo, but his white count is definitely improved--from 76,000 last Friday to 17,000 today, almost normal. His platelet count continues to drop and is 34,000 today from about 50,000 Friday. With the chemo, we expect his counts to continue to drop and then recover. When they are at a certain level, likely 2-3 weeks from now, he will be readmitted for radiation/chemo and transplant. As his white cell count has decreased, he has felt better and is smiling, laughing and eating more. We've had some visitors who have helped lift our spirits including Heather and Pastor Cheetham from Heritage Baptist Church, the Ghaffari family, and Manjula, our chaplain and friend. Manjula and I were discussing today how spontaneous laughter can increase the bodies antibodies leading to an improved immune system. With Luke I have recently noticed that if I start laughing, he will imitate me, and before long we are both rolling in laughter over nothing. I think I'll try this on myself when I'm feeling down and to keep my immune system up. Lam and I are concerned about becoming sick since that would be a real problem during the transplant phase and in the next few weeks when Luke is immunocompromised. I also wanted to thank the Laubach's for signing the guest book as well as all the rest of you. We check the guest book almost daily and your messages give us a real boost. The daily stress of Luke's disease and anxiety about the future can at times be overwhelming. Last week was one of those times and I prayed to God to help me deal with it. A few weeks ago we had a flat tire on one of our cars. This was fixed and I was driving the car to work last week. It felt wobbly so I stopped and looked at the tires. One was flat again! I went home and got out of the car. The other side was flat too! It's these small irritations in life that together with the current situation can be overwhelming. That nite and the next nite God answered my prayer by having Irene and Manjula call. Irene's son died in August from AML. She is a wonderful person and we spent time talking about our experiences and could relate well to receiving such devastating diagnoses in our children. She told me that when she was overwhelmed, she would give it all over to God and trust in him. That was exactly what I needed to hear. I can't believe that she who is still grieving for her child is so special to call me up to encourage me. Bless her. Manjula just perked me up when I heard her voice and saw her today. I pray to god daily for the strength I know he will give me, my husband and Luke to bear any burden. Tomorrow will be our last day of chemo and we hope to be back home tomorrow nite. Our room was changed yesterday to 2355 and phone number to 650-498-2028. We've met some other families on the floor, one with newly diagnosed ALL. We will pray for you all, Tracy! and also Sawyer who was in for treatment for medulloblastoma. The interactions with other families going through similar experiences is great for swapping info and for emotional support. Will journal again when home.

Saturday February 9, 2002 11:42 PM CST

Luke was admitted to Packard today for his third round of chemotherapy. He seemed very much at home there which is kind of scary! We are on 2North room 2343. Phone number is 650-498-2020. He's starting the ara-c and fludarabine tonite. So far, so good. Thanks to Rosa, my brother's fiance, we had a wonderful meal of sushi, potstickers, salmon salad, and something else whose name I don't know with a brownie the size of a cake that was scrumptious. Luke is very selective and picks and chooses what to eat. His appetite was pretty good today. We will only be in for about 5 days, thank goodness. The nurses on 2N are great and it was nice to see them again. Will keep you posted.

Friday February 8, 2002 10:40 PM CST

What a week it has been! Our plans for admission have changed twice in the past two days. On Wednesday, we heard that our donor had sinusitis and the admission date was changed to 2/18. Yesterday, we discussed with the team Luke's quick progression of leukemia. His white count is now 76 and platelet count 50. He also had a bit of blood in his stool. We all agree that he should have a course of his regular chemotherapy--ara-C, fludarabine, and cis-retinoic acid--to stabilize him and prevent progression to possible GI bleed like last time which would make transplant impossible. He will be admitted probably tomorrow for 5 days. This will delay the transplant by several weeks at least but is the safe thing to do at this time. You can imagine how our emotions are going up and down like a roller coaster. Dr. Dahl, one of our oncologists, also brought up that a new drug should be available in about 6 months which helps to block the mechanism involved in Luke's disease. Unfortunately, I forgot to ask the name, but will let you know. If anyone wishes to reach us at Packard Children's Hospital the info number is 650-497-8000. Luke had his appointments with radiation oncology, heme-onc and bone marrow transplant, his renal study, and his measurements done for radiation. He wasn't allowed to eat last nite after l2am. We were at the hospital this morning waiting to be seen by anesthesia. While waiting, we played with the plastic dishware and food. Luke quickly put the plastic banana, corn on the cob and hamburger pattie in his mouth and tried to take a bite, he was so hungry. He had to have general anesthesia for the measurements and xrays to prepare for radiation. Afterwards he ate like a horse. Please pray that he will do well with this course of chemotherapy and be stabilized until his transplant. We heard that Joanne Pang has a 5/6 donor and are very happy for her. I will keep you filled in regarding Luke's chemo.

Tuesday February 5, 2002 9:45 PM CST

Sunday February 3, 2002 9:38 PM CST

Luke and Dad are watching the superbowl at Lam's friend Vinh's place while I take care of some catchup stuff for work. I wanted to take this opportunity to talk about bone marrow donor registry. There continues to be a great need for more donors especially in the minority and multiethnic community. I was probably like many before--I heard about marrow drives but it never really sunk in how important they were and that a person's life was at stake. I always thought the person looking for a donor would certainly find one without my help. The facts are, though, that at this moment 5000 people are looking for a donor. Many will find one but some will not. Usually, a bone marrow transplant is the last resort or the only possibility to cure a patient or prolong his life. There are several misconceptions we have run into when we did the donor drives. When you sign up for the registry you are first asked to fill out a questionnaire to ensure that you are an appropriate candidate. If you are, you give a small blood sample. You do not have your bone marrow taken when you sign up on the registry as some people thought! If you are later found to be a possible match for someone, you are asked to give another blood sample to test at a very specific DNA level if you are the best match. If you are the best donor, you then have a bone marrow aspiration if you pass the physical, etc. Two other things are important: when you sign up for the registry, please understand what you are doing and be committed to following through. Remember, that if you back out, and you are given that opportunity to change your mind, a person may lose their only chance at survival. The next point is that if you move,please, please notify the bone marrow registry (you can always call the red cross if you don't know where to find them) otherwise, you can't be located and again a person may miss their only chance to survive. The bone marrow aspiration is done under anesthesia so you don't have any pain during the procedure. I've heard that after the procedure you may feel sore for up to a week, as if you had exercised hard and had sore muscles. Some exclusions from giving marrow include autoimmune diseases such as lupus, scleroderma, rheumatoid arthritis, cancer, some patients with diabetes, some patients with epilepsy, some heart diseases, hepatitis, HIV, if you are a organ or tissue transplant recipient. Out of several million people on the registry, Luke had only one donor, a 5/6 match due to his rare HLA type. We thank the Lord that there was one person and that he is staying the course. Without him, Luke would likely pass away within a year since his disease is so lethal and the only cure is by bone marrow transplant. Please encourage those you know to sign up. Many cities have satellite offices for bone marrow registry such as San Jose. For the satellite offices, you have to call the Red Cross to schedule an appointment. There are also many bone marrow donor drives occurring. I will let you know how to find those soon. For anyone who is at least l/4 minority, bone marrow registration is free. However, for caucasians there is a fee of $21. This occurs because there is a major shortage of minority and multiracial donors but many caucasians on the registry. Special funding was provided to encourage more minorities/multiracials to register at no cost. Since your bone marrow HLA type is inherited and tends to be more similar to those of similar ethnicity, best chances are those of close inheritance and ethnicity. But sometimes a person from one ethnic group can match one from another such as a Filipino male who matched a Caucasian I heard of. Right now I know of 3 children who are searching for a donor--Kayli age 3 in Fresno who is Brazilian and I believe Polish, Nicole in Seattle who is l/2 Japanese and l/2 Caucasian, and Joanne Pang(I believe she is still looking)the 8 year old Chinese girl in SF. If you look at one of the links at the bottom of this page you will see www.shrimplouie. You may have heard of Louie Bonpua in the news recently. He was diagnosed with CML about 4-5 years ago. He had 5 brothers and sisters none of who were a match. He was tried on a number of chemotherapies for his disease and was in remission for a while. He dedicated himself to the cause of raising money for leukemia/lymphoma research by doing athletic events such as triathlons. Please read his web site and look at the section in the news. Last fall, his disease progressed. He did not have a donor. He opted not to have further chemotherapy and continued to compete. He was asked to carry the olympic torch in this area a few weeks ago. The week prior, he went into a dangerous situation, a blast crisis but still carrried the olympic torch a few days later. The next day, he fell into a coma and passed away within a few days. He is a true inspiration and also points out the need for so many more donors.

Sunday February 3, 2002 0:38 AM CST

Hi all, It's actually still Feb 2nd here in California. Luke's scheduled admission date is for 2/11. The countdown begins. 8 more days of freedom for Luke!Luke is still running around the house like an energizer bunny rabbit. He is still babbling and not speaking a lot of words but I hear this often happens with boys or kids raised in a multi-language household(his babysitter spoke Vietnamese). The other day my mother saw him pick up a phone and say "Alo, Alo" for hello, and then babble on. She told my sister that maybe he was speaking fluent Vietnamese!(my mom is Japanese). Lots of stuff coming up this week--his Hickman catheter will be replaced with a 2 lumen one and he will have another bone marrow biopsy all on Monday under general anesthesia. Wednesday he meets with radiation oncology and they do different scans of the body in preparation for radiation, probably under conscious sedation. Thursday he has a nuclear study kidney test called GFR and we meet with the transplant team to discuss the conditioning regimen of chemo and radiation. Unfortunately, Luke's liver labs have remained high and it's felt to be due to leukemia involvement which raises his risk for complications during the chemo/radiation including venoocclusive disease of the liver where the veins of the liver become occluded and the liver fails. Luke also has a history of a lot of GI or stomach, intestinal involvement by leukemia. Both the liver and gut involvement have either never or rarely been seen in JMML. We pray that he will not develop serious complications. On the home front, Luke's sister Christina Hope seems pleased as punch with him and is always smiling at him. However, he returns her smiles with a cold stare. His rule as king of the house is threatened! We hope this will change in the future. He also continues a fascination for any electronic object. The other day in clinic a 6 year old girl was playing with a gameboy. Luke quickly got off my lap, walked across the room and stood in front of the girl inches away, staring at her gameboy. Her mother finally let him play with the gameboy and he rewarded her with big,big smiles. I guess we know what toy he wants next. Dad and Mom are rushing around to take care of all the final business before spending 6 weeks in the hospital, then 6 weeks in Palo Alto next to the hospital. Please continue your prayers for Luke's transplant to be successful, for him not to develop any life threatening reaction to the chemo/radiation before transplant, and no sever graft vs host disease or infections after. We will let you know his room, phone number and how often visitors can come. We'll be taking a computer with us to get email and keep you posted by website. God bless, Sarah

Tuesday January 29, 2002 0:05 AM CST

With only a few weeks to transplant, time spent with Luke seems more precious than ever. We don't know what will happen with the conditioning regimen of chemotherapy and radiation before the transplant, the transplant itself, and then the weeks after when he will be immunosuppressed. Your words of encouragement are greatly appreciated. I'm thankful for this website where we can keep you up to date and receive your messages. Luke is doing well and we hope he hangs in there until the admission date. He will have his Hickman catheter(tube into his chest which allows for blood draws and chemotherapy without any pain) replaced by one with 2 lumens next Monday. His appetite is decreased, I believe because of his enlarging liver. His favorites are bananas, rice, and raisins, not that appetizing if you ask me. Of course he loves Mimi's macaroni and cheese or lasagna! He is spending a lot of time at home with mom and dad but we try to take him to his favorite places like the Children's Discovery museum (where he loves Bubblogna and the Thomas the tank engine track), Happy Hollow zoo, and the Japanese garden. He enjoys even more visiting his second family--Nicole, Quy, Mimi, T.J., Jon Tom and of course "The Babysitter"(Ms. Huong Le), who babysat him from age 2 months to l8 months when he was diagnosed. Their family has been so supportive when Luke was in the hospital and since. We appreciate their kindness and generosity and their love for our son. Luke also loves to watch his videotapes with his favorites now being anything with Elmo, Little Bear, Blues Clues, and Thomas the Tank Engine. He still also loves the The He Tre series with Xuan My who is the Vietnamese equivalent of Shirley Temple. I believe that Lam and I can repeat most of his tapes word for word in our sleep since we've seen them so often! He continues to be in the stage where he believes that entropy is the state of the universe. Anything he sees which is ordered, i.e. a bowel of crackers, a box of crayons, has to be immediately dumped out. He also has the Linus complex from Charley Brown except that he drags around a pillow which has a blue striped pillowcase that he has fallen in love with. Luke got a l/4 inch crewcut from Dad a few days ago and I now call him my little bald eagle.

I wanted to say thank you to Heritage Baptist Church before I sign off tonite. The week Luke was diagnosed, I prayed to find a church I could join. The next day Pastor Cheetham came knocking at the door inviting people to the church he was starting. I don't believe this was a coincidence. He came in and prayed with me about Luke's situation. Since then, I have joined the church and received wonderful support from the congregation who have been praying for Luke throughout this ordeal. I believe that all people going through such situations as this ask God why it has happened to them. The church and my discussions with Pastor Cheetham have helped me realize that God does not cause disease to occur to people. He has the power to heal and I will continue to pray for Luke's healing. I know that He has promised to give us the strength to bear our burdens and I daily pray for this and know that many others will also.

Saturday January 26, 2002 11:29 PM CST

Our daughter, Christina Hope, came back today with Lam's parents. We are elated to have everyone back. Lam's parents were here also Oct-Dec. Words can never express our thanks to them for all they have done for us. They took care of our newborn when we were in the hospital with Luke. At one point, we didn't know if Luke was going to make it due to gastrointestinal bleeding he had due to the leukemia. He was in a state of disseminated intravascular coagulopathy where the clotting system basically goes haywire. He had so many transfusions at the time that we lost count. Luke's doctors were even unclear about whether to give chemotherapy because of a fear of whether it would make the bleeding worse but miraculously, the bleeding stopped during the first course of chemotherapy and has never restarted. This occurred back in Sept-Oct. Luke is hanging onto my arm as I type this and he looks like a million dollars. Of course, he would rather mom connect with the Theodore Tugboat website! His sister Christina Hope was born the week after Luke's diagnosis, Oct 1, 2001. Of course her middle name was chosen the week before Luke's birth to remind us to keep hope always in Luke's situation. She was not a donor match for Luke unfortunately. A sibling has a 25% chance of being a match for transplant. Many parents have other children, if time allows, hoping for a match for this purpose. In our case, we did not have the time to do this since JMML is a very aggressive disease and does not go into remission with chemotherapy alone. Luke was fortunate to have any donor at all since his "HLA type" which is determined by a set of proteins on our cells which are inherited from our parents was very rare. We have the 5/6 donor however recently found out that further testing was never performed on a number of potential donors in Japan. To clarify, donors are first typed serologically. If they look like a good match they are called back and blood is drawn again. The new sample is looked at more specifically at a molecular or DNA level. Many who are a serological match, turn out not to be a molecular match. l6 in Japan were a serological match but were never molecularly typed to see if they were also a molecular match. In the US, throught the National Marrow Donor Program, 6 people were a serological match. However, when they were molecularly typed only one was a 5/6 match which is the donor we are using. Unfortunately, our team at Stanford does not believe there is enough time to track down and type the potential donors in Japan for Luke's bone marrow donation. We will type the Japan people anyway due to the very high relapse rate with JMML. If Luke relapses, and we find a better donor in Japan, we can use them for a second transplant perhaps. Unfortunately, we have to pay for the international typing of these l6 potential donors ourselves and the cost is $2,000 to 3,000 per person for a total possible cost of $32,000-48,000. Not good news. Please pray for us about this as well as Luke's transplant.

Friday January 25, 2002 0:15 AM CST

We finally have a tentative transplant date of l month from now. Luke will be admitted in 3 weeks for the chemo/radiation first. We will be using the 5/6 donor. He is doing well though he is a bit more symptomatic and his labs show the disease is progressing. Please pray for us and the upcoming "l00 days". We will need strength from God to keep going.

Friday January 25, 2002 0:15 AM CST

Monday January 21, 2002 1:39 AM CST

Luke had his laparoscopic splenectomy done in mid Dec. We stayed only one night in the hospital! Post splenectomy, Luke has to take penicillin 2x/day (probably for life). He is also taking cis-retinoic acid (accutane) daily. Bactrim 2x/day for 3 days/wk. Zantac 2x/day.
Because he hates to take the pcn and would spit out the medicine or vomit, Luke is now getting monthly shot of pcn.

Monday January 21, 2002 1:25 AM CST

Update on Luke's condition:
Luke had his first course of chemotherapy during the first three weeks admission of his diagnosis. It took about two weeks for his count to recover and he received his second couse of chemo about mid October. Luke's count recovered enough for him to celebrate Holloween (see pic below). Ikuko Gaskins, Luke's grandmother from Vallejo, and the rest of Sarah's family came to our house for Thanksgiving.

Sunday, January 20, 2002

Please review http://www.saveluke.org for bacground information on Luke and juvenile myelomonocytic leukemia (jmml). This web site will give us the opportunity to give more frequent updates on Luke's condition, upload recent photos, and allows for a guestbook.

Update on bone marrow drives:
Nov. 18, 01 at San Jose Medical Center. Approximately 300 people registered.
Dec. 11, 01 at Valley Medical Center. Approximately 100 people registered.

Click here to go back to the main page.

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