TeamMatthew.org Blogs

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!