For many months, Matt has suffered from complications with his fight against graft-versus-host disease (GVHD) and scleroderma. Despite treatments, the scleroderma slowly started affecting his limbs, including his legs.
In late January, Matt was hospitalized for what appeared to be a skin infection (cellulitis) in his left leg. He was given an array of antibiotics and tests, but no infections were found. Instead, his left leg became increasingly more swollen. After a few weeks in the hospital when it was determined there was no infection and the swelling in his leg had decreased, Matt was released to go home. It was perfect timing as he was able to celebrate his 1-year wedding anniversary with Chloe in mid-February.
Unfortunately, a few weeks after his release, he started noticing more redness on the upper thigh of his left leg. He went to his usual doctor’s appointment at City of Hope and, in abundance of caution, he was again admitted. The doctors again tested Matt’s leg for infections, including a biopsy of the skin on his leg, but none were found. It was ultimately confirmed that the swelling was due to his GVHD. The scleroderma around his waist had constricted circulation to his legs and fluid continued to build up. His left leg continued to swell from his foot to his thigh. After several weeks in the hospital, his right leg started to swell as well. The doctors escalated Matt’s chemo treatments to try and stop the progression of the GVHD. They also gave him medications to decrease the swelling in his legs. However, both legs remained swollen and big.
Even though the fluid build-up in his legs was causing pain and discomfort, it did not stop Matt from walking around the hospital, chatting with nurses, laughing with visiting friends and family, and diligently studied to keep up with school work (even taking a few proctored midterm exams)…all in his 15 x 15 foot hospital room. Most of us would have withdrawn and given up out of sheer frustration and exhaustion. Not Matt. As he had always done, he remained to have a positive attitude throughout the whole ordeal.
For a few days in April, the swelling started to go down and things seemed to be improving. We are all optimistic, including Matt. So the doctors continued Matt’s course of treatments.
A turn of events happened in late April/early May and Matt’s condition quickly deteriorated. His right leg swelled to the point where Matt became bedridden. He was no longer mobile and could not walk around; he had to rely on family members and nurses to help with basic everyday necessities. Everyone who knows Matt knows this was devastating to him.
Around the same time Matt became bedridden, he started experiencing shortness of breath. The GVHD had started impacting Matt’s lung, restricting the full expansion of his lungs. Soon, our worst fears were realized, he caught pneumonia. With Matt’s GVHD and how it had affected his lungs, pneumonia was going to be extremely difficult for Matt’s body to overcome, despite his continued will to fight.
In the days to come, we learned of Matt’s poor prognosis. On Wed/Thurs, May 2 and 3, Matt’s parents and Chloe met with his doctor to discuss the remaining limited options. In short, one option was a bronchoscopy to determine the specific type of infection and treat accordingly. However, with the condition of Matt’s body, this option would result in Matt relying on a breathing machine (ventilator) forever, which meant he would be sedated, never wake up and never be able to communicate with us again. His doctor was also certain he would not be able to continue treating Matt if he was on a ventilator. The second option was to aggressively treat the pneumonia with an empirical arsenal of antibiotics and hope that something would combat the infection. The second option allowed Matt the opportunity to continue fighting. We discussed the options with Matt and of course, he chose the second option. He wanted to continue fighting, and we were all on board.
He was immediately loaded with antibiotics and medications that would hopefully combat the pneumonia, swelling in his legs, and GVHD. For the next few days, Matt’s family and friends visited him to keep his spirits up. Despite being bedridden, Matt still continued his positive and fighting spirit. He continued to make sure everyone in the room was smiling and laughing, not saddened or crying. The positive energy definitely helped to uplift everyone’s spirits, but by Saturday/Sunday, May 5 and 6, his condition deteriorated and his pain level escalated. His family and friends could see how much Matt was suffering. His pain medications were escalated and he was continually more sedated and non-responsive. We wanted to ensure he was not feeling pain and comfortable.
With an amazing amount of friends and family, the group which has become known as Team Matthew, were continually by Matt’s bedside, keeping him at ease and showing how loved he is by everyone. Team Matthew stayed by his side and told stories daily about how he has impacted everyone’s lives. Thanks to all the Team Matthew supporters, there has been an astounding outpouring of comments and pictures posted on Facebook and through text messages. Prayers and positive energy were constantly filling his room.
As the days passed, although Matt was not alert and not able to communicate, it became evident through his body language that he was in constant and continued pain. By Wednesday/Thursday, May 10 and 11, x-rays showed that Matt’s left lung had collapsed and was non-functional. With no hope of recovery, Matt’s family made the difficult decision to let him finally rest in peace and end his suffering. Matt’s antibiotics were ceased and he was made comfortable.
True to form, Matt unselfishly continued breathing for another 24-hours and gave his family and close friends time to say our good-byes. At 6:30 p.m. on Saturday, May 12, 2012, with Chloe, his dad and one of his best friends by his side, Matt quietly and peacefully took his last breath. He is no longer suffering and no longer in pain.
Keeping with Matt’s spirit, this post would not be right without positive news. Between the time of Matt’s last post/2-year anniversary of his transplant and his last hospitalization, Matt continued to live life as he always did and enjoyed the company of his family and friends. A few of Matt’s last experiences:
In mid-December, Matt and Chloe made a trip to Arizona to visit Matt’s donor, Diep and her husband Michael. It was a fun and memorable time. Because of Diep, Matt was given 2.5 more years of life to enjoy with his wife, family and friends. We are eternally grateful.
One of the major milestones that Matthew reached earlier this year was getting to his 30th birthday. With his birthday so close to New Year’s Day, his loved ones couldn’t think of anything better than to bring in the New Year by celebrating Matthew’s life. We all partied the night away in the Bay Area with people overflowing the venue. The party was beautifully decorated with a few of Matthew’s passion in life, including the Lakers, Photography, and Extreme Sports. There was a touching video that was made to commemorate this milestone, which can be seen below (Quicktime plugin required).
Matt and Chloe’s celebrated their first wedding anniversary on February 19th.
One of Matt’s favorite hobbies was photography so with a group of close friends, we headed to Las Vegas for the Wedding Photography Trade Show. Matt, Chloe, and whole gang had a grand ol’ time eating, exploring, and watching the O show (a show Matt and Chloe had wanted to see for some time).
On May 11th, the yearly bone marrow transplant reunion took place at City of Hope Hospital. Although he could not pick up his own GIANT BUTTON this year (referenced in his previous blog post), his friends and family happily accepted his third button to add to his collection. As seen in the picture, on the day of the reunion Matt was given another 2 years, 7 months, and 23 days with us – all due to the miracle that we all know as Diep Dao, his bone marrow donor.
During the last few days of Matt’s life, Chloe monitored Matt’s phone to ensure things were taken care of. She discovered in his Notes app, something he had jotted down 67 days ago while he was in the hospital. He titled it “Life Notes/Thoughts.”
For those who know Matt, you can’t help but smile/giggle upon reading the first “be a farmer…be like Kobe” life note. That was so Matt. We miss him dearly.
Matthew’s friends and family have been getting inquiries on donations, so we thought it’d be best to post the information here. If you would like to make a donation Team Matthew, we welcome donations by check. Please make checks payable to “Chloe Nguyen” and mail to:Chloe Nguyen P.O. Box 10124 Westminster, CA 92685
All donations are used towards Matthew’s funeral service and furthering the goals of Team Matthew.