TeamMatthew Blogs

Ashley, Nancy D. (Birthday Girl), and Nancy #2

A few friends decided to pump up their blood pressure by going out to Lake Elsinore, CA, and jump out of a moving airplane for kicks. They were actually out there celebrating Nancy D.’s Birthday.  Nancy has been a very dedicated and “hardcore” Team Matthew volunteer, attending almost every drive we had in Southern California. When she’s committed to something, it’s hard to pull her away - so it was only fitting that when she committed to jumping out of a plane, that’s exactly what she did! Two of Nancy’s friends, Ashley and Nancy, joined the birthday girl on this crazy feat. I would have loved to join them — maybe next year???

Happy belated birthday and congrats to Nancy on accomplishing one of the things on her bucket list. And, way to represent TM!!

Is she giving her last kiss good-bye? j/k she landed safely on the ground.

Yeah I feel good!!

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Click on image to download pdf flyer

Our friends at Asians for Miracle Marrow Matches (A3M) are having a Bone Marrow Drive and a Fundraiser in partnership with Turtle Beach Store in Gardena, CA. The store features Island apparel and accessories, which make great holiday gifts. This weekend there will be a Drive ONLY and next weekend there will be a Drive + Fundraiser. Come on out and show your support.

Help us spread the word to your friends and family! 10% of purchases with the attached flyer will be donated to A3M.

Drive ONLY - Sat & Sun Dec 5-6, 11am-4pm
Turtle Beach Store 1693
W. Artesia Blvd.
Gardena, CA 90248

Drive + Fundraiser - Sat & Sun Dec 12-13, 11am-4pm
Turtle Beach Store 1693
W. Artesia Blvd.
Gardena, CA 90248

Store Manager: Dana Kanakaole, (310)817-5727

For further details or if you would like to volunteer, please contact the following

Sat 12/5, Drive only, 11am-4pm, Recruiter Jackie (jandrade@ltsc.org)
Sat 12/6, Drive only, 11am-4pm, Recruiter Glen (gsangustin@ltsc.org)
Sat 12/12, Drive + Fundraiser, 11am-4pm, Recruiter Ted (tnguyen@ltsc.org)
Sat 12/13, Drive + Fundraiser, 11am-4pm, Recruiter Niranjan (nbhatt@ltsc.org)
Or Call A3M’s office at (888) 236-4673

Recently I found out about a fellow UCLA student who was diagnosed with Leukemia. I wanted to share her story to everyone to show that MANY people are effected by cancer so there is a need to have MANY people registered at bone marrow donors. Janet Lian, 22 years old, was diagnosed earlier this year with ALL, Acute Lymphoblastic Leukemia (bi-phenotypic). She is of Chinese descent and desperately needs your help. Janet was diagnosed and treated at UCLA medical center but is now back home in the Bay area. She is currently getting chemotherapy treatments at UC San Francisco. Chinese and Asians Please Register to Help Janet Liang and many others.

Please register to help Janet and others like her. We can never have too many donors in the National Registry. You can go to www.BeTheMatch.org , www.AsianMarrow.org , or www.AADP.org to find live drives near you.

Janet Liang, 22 years old, needs YOUR help. Please help Janet and many others like her.

To learn more about Janet please visit her website to find up to date information regarding her progress at www.helpingjanet.com

Janet and I were also featured in UCLA Daily Bruin Newspaper and UCLA Pacific Ties Magazine urging UCLA students to register to become a marrow donor.

A few words from Janet:

“There’s an overwhelming amount of guilt I feel and frustration, because all I can do is keep asking and begging. That’s all I’m good for these days with no guaranteed promise of the ability to return your favors. I also understand that many of you have fruitful, promising lives/futures and are extremely busy. All I can really tell you is that I have about 3-4 months time to come up with some kind of bone marrow donor match. That is nearly impossible. The pressure is on, as my doctors and bone marrow transplant coordinator continuously remind me of the time-sensitive nature of treating this disease. If not, they’ll continue to drag it on and on, keeping me alive with one chemo round after another until I become resistant to it and there’s no other alternative except an umbilical cord transplant, which will buy more time and is currently in the research/experimental stages.”

Trees, trees, and more trees. It's nice to be out.

Today is day 65 post transplant and I just got another surge of energy. I have been staying at City of Hope’s Village and things have been great. The “Beast/Fat kid” is back and I am eating constantly throughout the day…probably every 2-3 hours there is a “meal”, not a snack. Since the whole 3 month hospital stay, I have dropped weight from 170 lbs to 125 lbs. The last time I weighed this much was probably in 8th grade when I was 14 years old. So I hope to gain my weight back over the next few months.

The beautiful fall leaves

Health wise I have been fairing pretty well. No major GVH, just itchy palms and feet, rashes here and there throughout my body, and I’m more sensitive to heat now. I am like a vampire, once the sun hits me I start to get hot a painful pin prick itching feeling that spreads like wildfire on my chest, back and head. Oh I was hospitalized for a week for a slight fever and some lung congestion. They did a bronchoscopy procedure where they slide a camera down my lungs to see if I had any infections. Good thing was all negative. They released my back to the village with a clean bill of health.

Crunch! Crunch! Crunch!

Since my release from the hospital around day 30 something, I have been going back the City of Hope’s Clinic daily to get IV infusions of medication to prevent infections. Today while walking back home to the village I felt so FREE. I had my backpack, ipod in hand, and it felt as if I was back in college walking on campus carefree….No worries, no responsibilities, just me and the fresh air. I’ve been cooped up so long I forgot how nice it is to be outside. I continued to walk through the grass between the HUGE trees, hearing the crunching sounds of the fallen leaves under my feet. This made me feel so happy and strong again. Over the past few weeks out in the village I have met many people like myself with their own stories and struggles. I only hope they will be able to feel what I felt today.

It is day 32 post- transplant, making it 91 days total being in the hospital, and I got the thumbs up to be released back into the real world. However, since I will need to go to doctor’s appointment and get my blood tested fairly often each week, I will be staying at the Village.  The Village is City of Hope’s Hospital housing on campus for patients and I will be here until I reach day 100 post-transplant. It is sort of like private studio with a full kitchen. This way if i have any urgent problems or need blood transfusions I can walk right over to hospital. Although it is not home, I am still excited to leave my hospital room and take another step towards living a normal life (baby steps…baby steps…)

For the past few weeks I’ve had this song in my head that I heard from a movie. I couldn’t figure out which movie it was from nor the name of the song since I didn’t know the lyrics. All I could do was hum the song.  I originally thought I heard the song from the movie “House Bunny” but didn’t feel like watching it again from the beginning. I even looked up the soundtrack online but none of the titles sounded familiar.  Tonight while channel surfing, I came across that movie again towards the beggining  and decided to watch it. Lo and behold, I heard the song and more of the lyrics, and was able to find the name of the song. It’s ironic that i finally found this song the night before being discharged from the hospital because it lets me “know that maybe I will be ok”. Stand up to cancer and register to be a bone marrow donor if you haven’t already. I hope you guys enjoy the song (if you watch the video of the song, please watch until the very end.)

(A portion of the proceeds from her album will go to Stand Up To Cancer (SU2C))

Ingrid Michaelson
“Be Ok”

Here are the lyrics.

I just want to be ok, be ok, be ok
I just want to be ok today
I just want to be ok, be ok, be ok
I just want to be ok today

I just want to feel today, feel today, feel today
I just want to feel something today
I just want to feel today, feel today, feel today
I just want to feel something today

CHORUS:
Open me up and you will see
I’m a gallery of broken hearts
I’m beyond repair, let me be
And give me back my broken parts

I just want to know today, know today, know today
I just want to know something today
I just want to know today, know today, know today
Know that maybe I will be ok

CHORUS

Just give me back my pieces
Just give them back to me please
Just give me back my pieces
And let me hold my broken parts

I just want to be ok, be ok, be ok
I just want to be ok today
I just want to be ok, be ok, be ok
I just want to be ok today

I just want to feel today, feel today, feel today
I just want to feel something today
I just want to know today, know today, know today
Know that maybe I will be ok
Know that maybe I will be ok
Know that maybe I will be ok

Hello everyone! First and foremost, I want to thank you ALL for your continued support and prayers. I’m sorry I haven’t been very responsive lately to emails and messages. By the end of this message, I hope you’ll understand why.

At the moment, I am still at City of Hope Hospital. I have been here 81 days now, since July 22, 2009, when I was admitted for chemo. My treatment started out okay and then about two weeks into my stay, things started to take a serious turn for the worse. I ultimately developed a pretty bad fungal infection. Apparently the infection was in my blood stream and affected my entire body. The infection caused a nasty rash that covered my whole body and face. The pictures below show what the rash looked like, but isn’t half as bad in pictures as it was in person.  I’m not sure why, but even though the infection/rash is no longer “active”, it has made my skin darker…the red bumps have flattened and darkened and according to the docs, should fade with time - albeit slowly. 

Rash on stomach from infection along with bruises from giving myself insulin.

Rash on legs and my entire body and face.

Even though the rash his healing, I’m still self-conscious about showing my face because I don’t want people to do a double-take and give me weird second looks.  My skin has been peeling in different areas of my body (hands, feet, arms), and I think my neck is next.

Because of my infection, my doctor considered me a “high risk” patient. I was the first patient he saw in the morning and the one he was most worried about. At one point, he said they were doing everything they could for me. I was given a large amount of antibiotics - so much so that I was constantly dazed and talked in my sleep. I think I scared a few people with the conversations I had in my sleep! With my serious infection, things weren’t looking that great for me and, when I was conscious enough to realize what was going on, I was feeling pretty discouraged.  The only thing that kept me fighting during that time was the support of my family, my fiance Chloe (Tuyet), my friends, and the fact that I had a NEW potential donor.

In fact, I had 2 potential donors- one in China and one in the U.S.  Although neither were ideal 10/10 matches, or even a 9/10, these two people were the best matches I had at the time. Given my bad luck with the first match, I’m sure you all can understand, I wanted to keep this information private until I knew for sure the transplant was going to go through.  I did not want to get too excited like last time and be disappointed in the end.

So, after I recovered from my infection and the hospital had confirmed the commitment of the donor, on September 10, I was transferred to the 6th floor of the hospital, a.k.a. the Bone Marrow Transplant unit, to begin my pre-transplant conditioning.  The conditioning included 4-5 more days of chemo and meds to prevent any GVHD after the transplant.

And, DRUM ROLL please…………………Thank you to a young 24 year-old female located somewhere in the U.S., I underwent a bone marrow transplant on September 19, 2009! I now have a new birth date! I am happy to share this new birth-date with my sister Lisa Hope she doesn’t mind that I stole her thunder this year.  The 2-hour transplant went smoothly -  it was just like any other blood transfusion except you could see all the little white cells in the tube flowing through. My fiance said it looked like a melted strawberry smoothie. I tried taking a picture of it (below, right) but it kept coming out blurry.  I was feeling weak that day because of all of the medications and chemo, but nothing could take away the happiness and excitement I felt inside.

Stem cells flowing into my body.

My father holding my 2nd chance at life.

After months of waiting and unsure what the future had in store for me, I can now relax just a little bit because we have overcome the biggest of many hurdles that lay ahead.  Now I have to worry about the inevitable GVHD, short term or long term health issues associated with the GVHD, my diabetes and fatty liver that were chemo-induced, and if the leukemia will be gone forever.  (Cross fingers, toes!) I know I have to take things slowly, one day at a time, and be optimistic, but it’s hard not to think about all the “what-ifs” when I spend all day isolated from the world.  Speaking of isolation, I just realized that I have been isolated in my 6th floor room for about 30 days….with 2 separate doors separating me from the rest of the world. (Pix below, left.) 

Two doors separate me from the rest of the world.

But, on the upside, being isolated in here isn’t all that bad….at least I can keep my distance from people who may be sick and not know they’re sick. I’d rather be safe than sorry.  Any little cold

"MATT" on the back of my head.

or bad germ can be life threatening to me during this sensitive stage of my treatment - not only because of the transplant but because this last round of pre-transplant chemo was stronger than the other prior chemo treatments. But, like the other chemo rounds, my hair fell out again —  this time we had a little fun with it ——————————————————–>>>>>>>>>>>>>>>>>>>

Yep, Chloe and I were bored and I had the brilliant idea to use tape to spell my name. [Disclaimer: Chloe wants me to tell everyone that it wasn't her idea.] My hair was falling out just by touching it, so, there was no pulling or pain involved. Unfortunately, the stenciled name didn’t last very long… the rest of my hair eventually fell out a few days later. 

As far as my health goes, today is day 22 post-transplant and things are going as planned. My WBC count today is 2.1 and is working its way up.  I have not experienced much GVH yet, but expect it in the next week or so.  I am no longer needing blood (red blood / platelets) transfusions anymore since my body has been able to sustain itself. I am starting to experience itchiness all over my body which has kept me from sleeping at night.  I have lost a lot of weight and now weigh a little more than 140 lbs (I came in weighing about 175 lbs).  I have lost a lot of muscle mass and require physical and occupational therapy in my room. My doctor just gave me the okay to go outside of my room to walk around the unit.  Yay, no more isolation! It was kind of weird leaving my room after being cooped up in here for so long. For the most part, I spend my days watching movies and sports on TV. 

Besides all of this, I am very thankful for the second chance my dedicated 24 year-old female donor has given to me. I cannot wait to meet this person……if you haven’t registered to be a bone marrow donor yet, please register today! YOU can make a difference and possibly save a life!!

Again, I apologize for not updating my blog more frequently, but I will try to do it more frequently now since I should be getting stronger and healthier. Thank you to everyone for your constant support, messages and prayers.  I may not respond to all of them, but do know I receive and read them all!