project khanh

Khanh passing away

2008-09-23T17:31:00.001-07:00

To all that is reading his blog the sad news that Khanh passed away early Monday morning around 4:00am. Please pass this on to all his friends that you know.

Please pray for him. Thanks!

Funeral at
Oak Hill Memorial Park
300 Curtner Ave
San Jose, CA 95125

Cremation Service
Wednesday Sept 24, 2008 3:00 pm to 8:00pm
Thursday Sept 25, 2008 8:00 am to 2:00pm

Buried will be on Thursday Sept 25, 2008
at Oak Hill at 3:00 pm to 5:00 pm

Good Morning Everybody! :)

2008-08-02T12:48:00.000-07:00

Sorry it took so long for me to update this blog. I've been having trouble trying to keep myself at a comfortable temperature these few days. I was released from the hospital Tuesday night and finally felt the comfort of my bed and sheets again. I still do not feel very well since the fever and coughing keeps coming back 3-4 times a day. My spleen seems to be as large as it originally was before diagnosis of this cancer. This means I can not eat because it takes up all the space of the stomach. I can probably only eat about 1 bowl of rice a day so as you can imagine, I'm back to my stick figure self once more.

Home life has been very pleasant besides vomiting. I constantly check my temperature everyday to check for fever so I can Tylenol myself :P. I take my medications 4 times a day and in between those time, I waste away through sleeping or watching movies.

As for the whole transplant deal, we do not know whats going to happen now since the chemotherapy that Minnesota recommended did not help. When my Oncologist called around to get more opinions, we did not get any good news since my disease is so rare.

When I feel a little better, I'll update some more! :)

On another note.

2008-07-25T14:01:00.000-07:00

I would like to thank everyone for registering and persuading your friends out to register to become a potential stem cell donor. For patients who are still looking for that match, everyday that sneaks by scares them a little bit more. They get scared of not being able to find a match, finding the match too late, the donor rejecting to perform further testing, or transplanted stem cells refusing to graft.

Please do not refuse the further testing request and commit yourself to being a donor.
You can be that patient's one and only savior. Please don't throw away their one and only hope to surviving these rare diseases. It's already a tough battle for them.

Hahaha! Still in the Hospital. This is fun =P

2008-07-25T13:33:00.000-07:00

We got off the plane at around 8PM on Tuesday evening (July 22, 2007). Got home and all my stuff were covered up in sheets. We sat around and ate a cold In n Out burger then it's off to the hospital again! They got me registered at 9:30PM and I didn't get a room until around 2:00PM. It's not too smart for a Neutropenic patients to sit around in the emergency room for 4 and a half hours so I informed my nurse and relocated to a much smaller room with no one in there.

A lot has been going on around here. I'm currently still on antibiotics just in case the infection returns. I'm still Neutropenic and have been taking the growth factor Neupogen to help increase my counts. My platelets seem to run away somewhere so they keep transfusing it to me. I now can not eat too much because my spleen is taking up my stomach space.

About two days ago, I had the scariest fever. The fever developed at 2:PM and lingered around until around 10PM. At around 8:30, my body started to really burn up. The Tylenol's that I took 30 minutes earlier did not seem to help at all. I started to cough and vomit in my mouth. My head was burning hot and my eyes kept shooting out tears. For same reason, I just could not stop crying. I got scared and told my eldest brother to bring in my number 1 caregiver: my Mommy!

So thats about it. I'm still in the hospital and constantly battling this tumor fever. I get about 3-4 fevers through out the day. It seems religious now.

This Sucks =P

2008-07-21T10:18:00.000-07:00

I have sad and ugly news. The doctors over here had a gigantic miss-communication with me and instead of fixing the problem, they neglected it. After a week into my hospital stay, the oncologist finally filled me in on the situation. They wanted to see my reaction towards this new chemotherapy within 2 to 3 more cycles of chemo. My brother and I were completely disappointed when we heard this news. There are a lot of other things going on over here that would make a man crazy and furious but those are personal issues that I was definitely take up with patients relation.

To fill you in on my week, we were supposed to fly back to San Jose last Friday. I talked with the coordinator and got our tickets booked on Thursday. On Friday morning, the doctors walked in and explained to me that I had an infection in my PICC line so we can no longer fly. They want to remove my PICC line, replace it with another one, get me on some antibiotics, and monitor my cultures. If nothing comes up from now until tomorrow morning, I should be back in San Jose by 8:00PM Tuesday night.

My blood counts are also horrible right now. I have 500 WBC, 7000 Platelets, and no Neutrophils at all.

Still in the Hospital

2008-07-17T07:48:00.000-07:00

One week in the hospital so far. They drugged me up with the chemotherapy but it reignited really fast. Three days after the chemotherapy, I started to get my coughs and fevers again. Kaiser is also planning to take me back to California if further chemotherapy is better. For the last week, I had forgotten about everything. I didn't care about coming back to San Jose; coming back to the cozy apartment in Minnesota. I only cared about getting through the day. as I'm writing this right now, I'm also waiting for the doctor to come in and tell me what he thinks about this. Hopefully we stay behind for transplant. Words can not express how much I dredge this cancer. I do not gamble but if I do, I would have probably went all out already. Times are running short and I do not know how much longer I can endure this cancer.

I'm sorry I have not updated everyone lately. I have trouble going day by day already so I will update whenever energy allows.

I forgot where I got this picture from but I had hair!

Back to Chemotherapy

2008-07-10T19:46:00.000-07:00

After all the test done yesterday and today, the admitting oncologist has decided to give me another round of chemotherapy before we advance to transplant. They need to have some type of reaction and need to limit the cancer cells inside my body before we behind. On another note, for some reason, I have blast cells in my body now! My spleen has grown back to it's original size pushing my stomach causing my appetite to disappear.I am anemic so every morning when I wake up I get a nice white out while I walk with my brother to the clinic. Just like clock work, my fever of 103* return every evening at 8PM.

My new chemo regimen with be Hyper-CVAD. Chemo session on day 1, 3, 5 and day 2, and 4 will be hydration. Have no clue what it is but I'm going to research it right now. Since I can't eat, my breakfast and lunch include the varieties at Jamba Juice.

Have a nice night everyone, I'm back in the hospital!

Chemo Not Working Anymore

2008-07-08T19:05:00.000-07:00

We woke up at 8:10 and checked out of the Raddison Hotel before we began our walking journal to the clinic. Once we arrived, our Transplant Coordinator was a little late so we strolled to our new apartment and set up the electric bill. We went back to the clinic to do a blood draw and we had to wait 30-40 minutes before we can do our biopsy. My brother valiantly ran off on his own and got both of us some Jamba. The biopsy was not as painful as my first one but it sure do hurt still. One extra unit of platelets and we were release to go back home. Developed another fever so I covered myself up until I took my meds and it slowly dropped

The Oncologist also thinks that this is tumor fever so they will preform a CT scan tomorrow to verify. If it is the tumor fever, then we will have to delay transplant until a later time. They want to get rid of the minority of the cancer cells before they perform transplant to ensure better grafting.

Back to Minnesota!

2008-07-07T16:31:00.000-07:00

The hospital decided to keep me there for as long as they can to monitor my condition. On Saturday, I had a lot of good friends stopping by to visit and wish me a wonderful trip. The fever, however, will not go away :( All the cultures returned negative so my oncologist is thinking that the fever is coming from the tumor in my spleen. On Sunday, they gave me my medications along with refills my neuropathy (foot pain) and stomach ulcer.

We were discharged at 9AM, went home to do some quick last minute packing, and jumped on the airplane at 11:30. Goodbye beautiful Silicon Valley! We are on our way to Minnesota to hopefully cure this cancer!

My brother and I landed at 5PM central time. Since my appetite did not return, I could barely eat my bowl of Pho. After the meal, we went to the Radisson, checked in, and got our much needed rest.

Today was busy! We started out with a gigantic blood draw. There must have been at least 17-19 tubes of blood that they withdrew from my arm. After the blood draw, we got my chest x-ray and EKG done. We had 20 minutes of free time before we have our appointment with John about apartment accommodation. The day ended with Dairy Queen chili cheese dogs, moving our luggage to the new apartment and night medication. See you tomorrow everybody!

Back Home

2008-07-03T12:46:00.000-07:00

I had a fever of 103* on Tuesday night.

Went in to get my blood culture to see if I have any infection. The oncologist was scared so they threw me in the hospital again.

I feel a lot better today though but still couldn't kick the fever; getting some more platelets! >=] I'm at 7k (normal people have around 140K-400K.) I'm what they call around here a bleeder. My white blood cell counts are up but I'm still a neutrophilic.

Hopefully we get out early so I can start packing for the trip but one thing's for sure; we're not leaving today.

Low Counts

2008-07-01T14:20:00.000-07:00

So I just got my blood drawn on Monday (6/30/08) and the results were horrible! Platelet counts are at 4K/uL when it should be in between 140-400 K/uL (normal counts.) My white blood cells are at 0.8 K/uL when it should be 3.5-12.5 K/uL. The last time I had this horrific counts was when I had my first ICE chemotherapy (that's before the first Evergreen and Starbucks drive.) I spent the whole day yesterday sleeping in and saving energy. With this count, I can not go out and run wild anymore the way I used to. It sucks =P. My brother is also giving me daily Neupogen shots to help increase the white blood cell counts but so some reason it doesn't seem to be helping. This is a problem because if my counts do not come up in time, we might have to delay the Minnesota trip for transplant because they need my counts to come up and stabilize before they can do any testings.

I am currently sitting in the infusion center right now writing this blog. They are transfusing one unit of platelets to help my counts. I still have to clean my room and pack my stuff to prepare for the trip to Minnesota. :)

There are so many people that I want to see and say goodbye to before my trip but my plans were ruined with this blood count. Family is getting really scared every time I leave the house so I'm just going to be a homeboy until my trip. I'll try to keep everyone updated on my condition.

I got a better laptop with a good webcam now!

Crazy Week

2008-06-26T13:29:00.000-07:00

     Crazy week! It started last Wednesday when I woke up in the morning (12pm .) Woke up, walked to the bathroom and stood there waiting for dear Mama to come out. As I was standing there, I noticed that I was getting a little dizzy and everything started to white out. At this point, I knew I was going to collapse if I kept standing there so I ran as fast as I can back to bed before I fall on the hard ground. It happened again when my good old buddy Tony came over and I tried to open the door. This occurred before when I’m super anemic (low on red blood cell count) so I called my cool oncologist and told her about the happening. Me and my sister-in-law went in for a blood draw and dressing change right after. While I was there, I didn’t feel too good so I requested the nurse to check my temperature to reassure that I do not have a fever. To our surprise, I was at 103* so my oncologist requested a blood culture as well. After providing the blood, we went home and I got little rest before the on call oncologist gave me a ring and ordered me to go into the emergency room. If I do happen to get an infection, they can quickly treat it with antibiotics. I hated the emergency room because it was always a 3-4 hour wait before I can get a room. To my surprise, they tested my heart beat and found out I had a rate of 180-200 so they quickly shoot me into a room. I didn’t know if I should be happy or sad because of that but I am sure glad I didn’t have to wait.
     The doctors did a number of test and chest x-ray to see if they can spot any pneumonia or internal bleeding but found nothing. They juiced me up with 2 units of red blood cell and kept me overnight to see if my fever has dropped. I was also accompanied by the oxygen tank and heart monitor throughout this whole ordeal. When my fever stabilized in the morning, they decided not to discharge me because I was already due for chemotherapy. Some medics came in and wheeled me to the oncology side of the hospital. I was, once again, home. We spent the next four day doing ICE chemotherapy. Usual cycle consist of 2 hours of etoposide on the first day. 2 hours of etoposide, 2 hours of carboplatin, and 24 hour of ifosfamide on the second day will carry onto the third day. Day three will consist of 2 hours of etoposide and saline hydration. During my hospital stay, I felt strong enough so I finally had visitors! Co Hoang Mong Thu showed up with the people from A3M (asianmarrow.org) to pay a short visit and take some pictures. They are really bright people with a fantastic smile. Tony, Son, George (super monkey,) Cuong, and Nhan also showed up to share my time in the hospital. Besides all these wonderful people showing up to see me, I also had my courageous Mother, Brothers, and Sister-in-Law who were constantly by my side in the hospital making sure I don’t have a dull moment. We finished chemotherapy on Sunday and were discharged at around 12 noon.
     My elementary friend Ly from Sacramento showed up with his girlfriend to visit me. We tried going for Mexican food but my taste bud didn’t return yet so it was disgusting to swallow down the food. When they left, I went to sleep because I was still super tired from the chemotherapy. I woke up at around 7 at night and was looking a little pale and tired. I had the same problem returning; white out and extreme headache when I try to get up. My at-home-nurse (anh Giac >=D hehe) checked my temperature and it came back up to 103* again. So here we are, after being released from 5 days of inpatient hospital care; I decided to get a fever and turn to that scary emergency room. I still didn’t have to wait but this emergency room thing is starting to look like routine work for me. For this return visit, they performed the necessary test for infections and they also kept me on a heart monitor for 2 days under step down’s care. My poor brother had to sit through the whole night and slept in two chairs. They decided to transfuse 2 more units of red blood cells and the step down nurse couldn’t get my pick line to work so she had to poke another hole in my vein for an IV line. I was released on Wednesday after everything stabilized and could finally enjoy the comfort of my own bed again. According to my oncologist, this ICE chemotherapy might be wearing off on my cancer cells since my fever is constantly coming back. I will talk to my doctor more to learn about this situation.

Minnesota called and we are flying out on Sunday June 6th for testing and hopefully transplant!

www.projectkhanh.com is officially running!

Tuesday, June 10, 2008

2008-06-10T17:59:00.001-07:00

Where to start. It's been crazy over the last two weeks. It started out with being admitted to the hospital for my chemo therapy. I spent 4 days in the hospital and of course the usual side effects are there. Chemotherapy + hospital food = horrible time. After I was released from the hospital, I only had one day to rest and recover before my trip to Minnesota for the transplant consultation. On Sunday, m brother Giac and I boarded the airplane at 6 in the morning. To my surprise after boarding the plane, I forgot to take along my nausea medication. The body sores from chemo was still hanging on to my body and the nauseous airplane ride was painfully tiring for my poor little head. I almost vomited about 4 or 5 times but since I didn't eat anything all day, there was nothing to pour out.

We met with the doctor for a consultation on Monday and he explained the whole transplant procedure. They ensured me that they have found more than 2 umbilical cord blood unit that was a 5/6 match. They also said gave be survival statistics. Out of ten Khanhs that go into transplant, 8 of those Khanhs will survive. 2 of those Khanhs will die. Of the 8 Khanhs that survive, 3 will have graft versus host disease and 5 will have no complications out of transplant. A lot of information huh? I have also been experience neuropathy (nerve damage from chemotherapy) and was wondering if my foot would ever return to normal. I was shocked, scared, and sadden to find that it might be permanent. That means there is a chance that I might never be able to snowboard, hikes, camp, run, and ride my motorcycle anymore. But let's take this one step at a time and just worry about surviving first. J

After the consultation, we went shopping at the Mall of American (biggest mall in the world.) It had an aquarium and an amusement inside the mall! 6 stories total with each level as big as Great Mall in Milpitas. Since I had foot pain, I was looking for a more comfortable pair of shoes but didn't find any at a reasonable price. There's a really comfortable pair at The Walking Company that smells like lemon (can you believe it? I smelled a shoe) for $200! Way too expensive for my sorry foot!

We flew back on Tuesday and hit the ground running preparing for the Be the One Concert! Preparation was extremely tiring but we got everything together and rolling before Saturday night. The event was a complete blast to me! There were some pictures and video clips of myself not being very professional. The artists and special guest for the night was outstandingly talented and beautiful! We had a total of 340 guests attending the blood cancer awareness concert and registered 129 new potential donors. It was a little less than our target but I was still extremely happy with the outcome. It was wonderful to see all my friends that came out to support the event. All the wonderful supportive words and prayers just elevated my spirits. I'm ready for battle with this nasty transplant! I am also extremely grateful and thankful to have so many supportive friends behind my back.

My supportive family, Tony(hahahaha,) Chu Michael Luu, co Hoang Mong Thu, the Bombtwinz, Lynzie Love, the excellent artists performing for the causes, the excellent volunteers, my super tired friends; THANK YOU FOR MAKING THIS EVENT POSSIBLE! I had a blast! It was a night that I can never forget and I cannot find any words to express my joy. As a cancer patient, I do not know if the road towards recovery would extend past the horizon or suddenly seize at a dead end; but because of all you wonderful people, this road trip was definitely fun for me!

Wednesday, May 21, 2008

2008-06-10T17:58:00.001-07:00

I went to two donor drives last weekend. One on Saturday at Eastridge Mall and one on Sunday at the Little Saigon celebration. For the Eastridge event, my super cool co-workers from South Bay Honda came out to help. We also had the help from the sweet and loving arms of the Bombtwinz and their cute mommy. The Eastridge drive location was horrible; the community room is way out of shoppers walk way and no one would know that we even exist if we were to sit there. Co Mong Thu and Dr. Lam Do advertised the location on Que Huong Radio and our wonderful team of volunteers flagged down mall dwellers to register for the database. We collected 60 new registrant on this day.

The Little Saigon celebration was also an interesting drive because there was a huge collection of Vietnamese people. What saddens me is the poor results we got from such a big gathering. Only 100 people registered from the humungous pool of 2000 or so concert go-ers. We stayed there for more from 3PM to 8PM(sorry for keeping you there Anne! I'll make it up to ya!) Can't really blame these people for not registering. If I didn't win the unlucky lottery and receive this cancer, I probably wouldn't care about it either. But now I know that it's a problem and will be a continuing problem if we don't do anything about it. Raising awareness is hard =[

My cool oncology doctor also called me with good news over the week. She has found a 5/6 umbilical cord stem cell match but she said it might be too small of an amount to transplant into an adult. Less stem cells mean it'll take longer to graft itself into the bone marrow thus leaving the patient more vunerable to infections. If it's OK to do the transplant, we will have to fly to Minnesota to get the transplant since Stanford does not specialize in umbilical cord. So we are sitting here waiting for further news from her or the University of Minnesota. Scared and partially happy right now.

I also got my pick line replaced because it clogged up! Can you believe it? It's only been a month! I'll leave the details of that operation to your immagination; some people get grossed out from hearing the details.

If you can, please get your friends, family members, far off relatives, c-workers, acquaintances, and unknown strangers to attend a donor drive and get themselves registered. There are too many patients looking for a second chance on life so please us out. Getting registered is easy; fill out a form and peform a cheek swab. There are no blood work involved so please register. You might be able to save a life like mine and Michelle.

Friday, May 16, 2008

2008-06-10T17:56:00.000-07:00

Where to begin here… It's been a long time since the first and last blog. =P Anywho.. I will definitely try to do weekly blogs after this one. The St Maria church drive was definitely a fun, tiring, but successful drive! We registered around 210 donors and a whole lot of lovin' from the community! The day was extremely tiring for me because my blood counts were low but it was a delight to see so many people showing up to lend their time and support. This was also the first drive that project Khanh helped out so the drive got off on a rocky start but slowly smoother it's way out. As the day closes, we happily packed up our gears and gazebos and I just couldn't get the smile off my face since I met so many wonderful people throughout the day.

Our second drive at the St. Patrick Cathedral during the mist of Saturday morning. It was an extremely cold morning but I was thrilled and happy to see all the waiting registrants that have heard about our location from all the radio stations. We had a slow start in the beginning but ended the 3 hour donor drive with 90 registered donors so it was excellent considering the time we spent there. My blood count was low for that day so my mom and co Mong Thu was worried sick. =]

After the St. Patrick drive, my brother drove me to Kaiser to get my blood draw and I was still too low for chemo but my doctor requested me to go in anyways. This session of chemo lasted 4 days and was by far the best session I have ever had. I can actually remember the whole session instead of feeling drugged out and not remembering a damn thing. During my hospital stay, I surf the net to kill some of the boring bed time. I went across Michelle's page (www.projectmichelle.com) to see if she has posted anything new and was shocked to find out that her cancer has relapsed. My mom and I quickly called co Mong Thu to share the sorrow of this tragic event. Michelle is not only a helpful and generous person, she is also my hope towards a complete recovery. News like this just weakens the spirits of patients searching for the matching donor. Please keep Michelle and me in your hopes and prayers. We will continue this search to find that wonderful savour. Inform your friends and family about the shortage of minority donor. It is a simple and painless procedure for an individual to get registered. You can save a life.

Thursday, April 24, 2008

2008-06-10T17:54:00.000-07:00

It's been a while since I updated everyone on the current situation. Due to everyone's high support, we had a terrific turnout for the 16th, 17th, and Saturday's Starbucks donation drive. We had around 60 forms for the 16th, 90 for the 17th, and 90 for the Saturday drive totaling 240! Thats quite a high number and hopefully we continue to get these kind of numbers through out future donation drives.

We continue to ask for your support with spreading the news about the donation drives. I have requested all my friends and family to appear and get their cheek swab test so now I must reach out to the general public. Within the National Bone Marrow Registry, there are over 7 million representation for Caucasian and African American while the Vietnamese community only have 7000 registered possible donors. If we can increase this number, we can increase the chance of myself finding a donor or future children of Vietnamese ancestry to find a donor.

It has been very busy for myself and my family for the last week. I was just recently released from chemotherapy after 3 days in the hospital and was suffering from the drug's side affects. I have also become the recepient of the new Power Port which is basically a catheter. It's a port which allows doctors and nurses to easily inject or remove blood or chemical from my vein. The port is located on my left arm and goes all the way to my heart. Sounds nasty huh? I was still suffering from the side affects on Saturday as some of you might have seen at the Starbucks drive.

My friends and family have also got me registered with www.AADP.org and have set up a couple of talk shows and television shows on the Vietnamese radio station and television station. We finished the recordings for the show this week and it also air this week on Friday. For more details on show time, please email me. I will try to get a copy of the television interview on MySpace.

I also had a chance to talk to Michelle's mom at www.projectmichelle.com and Anne at the Saturday Starbucks Drive and was introduced to a very cute little 12 year old that was a transplant survivor. He received a 5 out of 6 match transplant at 5 years of age and is now running about enjoying his youth. Hopefully we can get the same kind of luck!

Well that is all for my April update. I will keep you all informed with what is going on. Thank you once again for all the support.

thank you supporters! Wednesday, April 09, 2008

2008-06-10T17:52:00.000-07:00

I would like to give my thanks to all the people that have supported me so far throughout this painful ordeal. I am extremely surprise and happy to see so many supporters after such a little time! Thanks to Tony and Vy for their hard work and high determination to get me better!

I am currently stuck in a wheel chair right now because I can not walk anymore. I was able to walk 4 days ago but I stopped taking the medication for it. Boy; was I wrong. When I went back to my doctor for the check up.. she got furious with me (usually a very nice woman.) I was supposed to continue with the medication but since I stopped, shes gonna have to delay my next chemo session. I got 4 other nerve medication to take at home now!!!

Once again, thank you very much for ALL your support and good wishes.

PS.. I hated needles and have not received any shots before in my life. Nowadays, I sometimes get 3 needles inserted to my skin in a day.. 2 blood test every week! It sucks!

first post

2008-06-09T22:42:00.001-07:00

going to chemo soon =[