A CEILING fan whirs quietly inside Rory Lacson’s Lakewood, Calif. home.
In the early afternoon, Southern California can be scorching. But inside Lacson’s home, the temperature is cool and provides a welcoming and relaxing environment compared to the heat outdoors.
The house was purchased by Lacson, 44, and his wife, Hilda, 33, a few years ago, a time when they held a “you-only-live-once” mentality: there was so much to do, so they frequented Disneyland, museums, libraries and parks, and were hardly ever home.
This year, however, Lacson has spent more time indoors than he did before. In January, he was diagnosed with myelodysplastic syndromes (MDS), a condition that affects the bone marrow and blood. For individuals with MDS, their bone marrow does not produce sufficient healthy blood cells and results in a compromised immune system.
Lacson, who migrated to California from the Philippines in 1988, worked as a nurse at Long Beach Memorial Medical Center where he cared for patients, before learning he had MDS. Now, he spends his days at his home where he is nearly isolated and exercises extreme caution so as not to get sick.
For one, his laundry is done separately and he has his own set of utensils. He also cannot eat anything raw, with the exception of fruits and vegetables as long as they are consumed within two to three days.
If his 5-year-old son Jayden catches a cold, Lacson must keep his distance by staying in a different room to avoid catching those germs and risk developing the flu.
Lacson’s physical contact with other individuals is slim to non existent: at family gatherings, he does not hug people or kiss them on the cheek, although such a greeting is customary among his relatives.
He also stays away from large crowds.
“I’m basically on house arrest,” Lacson said of his situation. “The only thing missing is the ankle monitor.”
Lacson does not appear to be a sick man. He manages to walk around, sit, stand up and speak like any other healthy individual.
Yet despite this, he is urgently in need of a donor, said Madhuri Mistry, community relations manager at Asians for Miracle Marrow Matches (also known as A3M), a recruitment center for Be The Match.
If his condition is left untreated, Lacson could develop leukemia.
“Often people do not take things seriously unless they see someone in the hospital bed. In fact, if Rory is able to find a match soon this is the ideal time for him to have a transplant when his health is somewhat good,” Mistry wrote in an email to the Asian Journal.
Around the time of his diagnosis earlier this year, Lacson’s state was the opposite of what he is today, his wife said, as he spent about two weeks in the ICU following Christmastime spent with his family.
Hilda said they thought he had come down with pneumonia.
“When he was in the hospital in ICU … he had so much fluid in his lungs and I would come in and the doctors would say, ‘Nothing’s changed.’ The next day, instead of me getting good news, they would tell me, ‘I heard something on the right side that wasn’t there yesterday’,” she recalled.
In the last few months, Lacson has been stable. He has endured three rounds of chemotherapy and has responded positively to the treatment.
He is scheduled for a fourth round on Monday, June 22. The treatment will be administered throughout a five-day period for an hour each day, and two types of medications will be infused – one to combat nausea and one for actual chemotherapy.
Although the treatment helps in stabilizing Lacson, the best chance of completely curing his MDS lies in a bone marrow transplant. Sometime around late April, Lacson’s hematologist advised him to contact Be the Match, a national marrow donor program where nearly 12.5 million individuals have signed up to donate their bone marrow to patients requiring a transplant. He was then contacted by a representative from A3M, which conducts more than 500 donor recruitment drives annually in a number of multiracial communities, including Filipino, Japanese, Korean, Vietnamese, Chinese, South Asian, Hispanic, and African American.
However, out of the millions on the registry, none have been a match for Lacson.
Patients in need of a transplant are more likely to match with someone of their ethnic background. Be The Match statistics from 2014 show that Filipinos constitute 0.5 percent of its global donor registry. No registry exists in the Philippines, and the organization often receives emails from people who need donors from the country.
The program states that 70 percent of patients in need of a transplant do not have a match within their family, odds that have played out in Lacson’s situation. He has turned to his relatives, including his siblings, for a possible match, but has not encountered any compatibility.
Without a match, Lacson is reaching out to the community, particularly his fellow Filipinos, to sign up and become a bone marrow donor.
“I’m not just doing it for me, I’m doing this for [those] who will be in the same boat as I am and not find a match. And that’s more important because you never know who’s going to have this disease. What are the chances really?” he said.
Because the issue is one that now hits home, the Lacsons are determined to spread awareness about how people can help those with the condition.
To become a bone marrow donor through Be The Match, one must be: between 18 to 44 years old (those between the ages of 45 to 61 may also register online); willing to donate to any patient in need; meet established health guidelines (donors cannot be at risk for or have HIV, be at risk for or have hepatitis, be significantly obese or have chronic lung disease, among other conditions).
By signing up, individuals agree to remain on the registry until they turn 61. They also consent to being willing to donate in two ways: a marrow donation, a surgical procedure where marrow is collected from the hip bone with a needle and syringe (anesthesia is used during this process); and by donating through peripheral blood stem cell (this is a non-surgical procedure where blood is drawn from one arm, passes through a machine that collects the cells needed, and the rest of the blood is returned through the other arm). The first method is used 25 percent of the time, while the second is used 75 percent of the time.
There are no costs involved in becoming a donor – individuals are reimbursed for any travel required and food, among other expenses – and one will only be asked to donate if he/she matches someone in need.
Although some may be hesitant to donate due to the procedure, Mistry stressed that the most common way donors help others is through the non-surgical method, which she said is like drawing blood. And for the marrow extraction, Mistry said donors wake up with soreness but often manage to return to work and normal activity within two days.
“One must remember that marrow donation saves lives!” Mistry wrote in an email to the Asian Journal.
Some years ago, A3M worked with a Filipino who has completed more than eight years post-transplant, is married and obtained a master’s degree in script writing from Pepperdine University.
“Without the generosity of a donor, Christine [Pechera] may not have had the second chance at life,” Mistry wrote.
While Lacson is currently in stable condition, Hilda said the case is not the same for everyone.
“There are patients who aren’t as blessed,” she said.
Hilda has been holding small personal drives among her coworkers to get more people to join the registry and the new donors are not just for her husband.
“When we sign people up, it’s for everyone. It’s for everybody. They get on the registry and they might match someone else that’s in the same shoes as Rory is. We’re just one family. Someone else could be having a drive and someone within their drive can be a match for Rory. So we do all this not just for him, but for everyone else that’s suffering from the same disease,” she said.
Lacson’s first official drive will be held on July 1.
As a result of her husband’s diagnosis, Hilda herself signed up to become a bone marrow donor. Hilda, who is of Guatemalan descent, is not a match for Lacson. She said that in her culture, issues like this are not discussed.
Now that MDS personally affects the family, things are different and they are speaking up to boost awareness.
“My kid needs his daddy in his life,” Hilda said.
As Lacson spoke about MDS during his interview with the Asian Journal, Jayden played with multiple toys, insisting that he is 5 years old — not 3 like his mom jokingly suggested. He knows that his birthday is coming up in a few months, and Hilda said it’s because he plans out what kind of theme he wants for his parties. Last year, his birthday party followed a Ninja Turtle theme.
Another way MDS has affected Lacson is that he tires more easily. Activities such as walking around the block and caring for his young son require more effort than before.
“It’s a little bit harder to take care of a toddler because they’re active,” Lacson said of his son. “He’s really active.”
“I’m not active,” Jayden responded softly to his dad’s description of him while playing with some toys.
“Yes you are. You play a lot,” Lacson said.
“Oh yeah.”
“There you go. That means you’re active.”
“Okay,” Jayden replied softly.
The worst-case scenario of having MDS could disrupt the Lacson family, but it’s not a possibility Lacson likes to dwell on.
“There’s a little bit of worry, but I just deal with it as it comes because that’s the only thing you can do. If it comes, then I’ll deal with it. If it doesn’t come then good. I just can’t plan ahead,” Lacson said.
Shifting his lifestyle from being out all the time to being inside has also been challenging for the Filipino father and husband.
“I think I’ve basically done almost everything and anything in the house that I can think of, that I’m capable of. And you know, it gets frustrating sometimes too because I want to go out and for all these years when we bought this house … we barely stayed in this house until this year,” he said.
Now, the “you-only-live-once” mentality he and Hilda once held has changed. The family now places greater importance on spending time with each other, even if they stay inside playing games and watching movies.
They radiate a positive outlook on Lacson’s situation, take it one day at a time and hold on to faith that he will be fine.
“We are [positive] and we have come a long way, but we have learned that God is good. God is very good and prayers go a long way and … you have to hold on to that faith,” Hilda said.
Their perception of life has also transformed due to Lacson’s condition.
“We take everything for granted. We don’t stop and thank god every day for giving us life. We don’t do that. We wake up and you just go on with whatever you plan that day, and when something like this hits you, you thank god every day for giving you that day, to see your loved ones, to be able to breathe, to be able to walk, to be able to do things that back in January you couldn’t do it. It makes you appreciate life a lot more,” she said.
More information on how to help Lacson and others like him can be found online at join.bethematch.org/saverory. Further details on becoming a bone marrow donor through Be The Match can be found at www.bethematch.org, www.a3mHOPE.org and by calling A3M at (213) 625-2802.
(www.asianjournal.com)
(LA Weekend June 20 – 23, 2015 Sec A pg.1)
