That's What Friends Are For

This is the title of a beautiful Dionne Warwick song. A truly beautiful one, for its music and its message.

Today is Yam's 18th day in the hospital. A special day. As special as Dionne Warwick' song. Karla Johnston Almazan (Yam's Mommy K) called long distance from Davao. For the past few days Yam's mood was nothing more than plain valley. No hills, not small undulations. But Mommy K's voice on the other end lightened up Yam's dormant mood, revved up her latent energy and charged up her sagging countenance. They talked for almost an hour, the way they always do, and in the process, transforming each other into better persons.

Warwick's song reverberates in the air:

"Keep smilin’, keep shinin’
Knowin’ you can always count on me, for sure
That’s what friends are for
For good times and bad times
I’ll be on your side forever more
That’s what friends are for"

Caring for the Caregivers

Two Sundays ago, I was privileged to attend a meeting at the Davao Medical Center. Xai, the dedicated and gregarious worker of the Kythe Foundation, sent me a text message the previous night informing me of the event. She called the event "Parents' Day- Off" and was to start at 2 o'clock. Attending were parents of pediatric cancer patients at the hospital. In the early evening, a modest "Children's Party" was tendered to "resident" pediatric cancer patients.

Finding my way to the meeting place, I arrived in the nick of time and meekly joined the parents' assembly. While some parents came all by their lonesome, not a few tagged their sick child along. It was like a prayer meeting where praise songs were sung and words of encouragement were shared. Then the pack was divided into smaller groups where the members shared their experiences and mutually drew strength from each other. While each has his own unique story to tell, there were many common strands which everyone easily identified with. Prayers were then said amidst the natural bonding felt among strangers with common concerns. The event was both therapeutic and instructive.

After sharing modest snacks provided and served by members of the Rotaract, a short debriefing ensued. The parents then moved on to the newly-built Hope building where more intimate conversations were held.

In the early evening, a party was tendered to the pediatric cancer patients. Two civic organizations sponsored the party - Rotaract and De Molay. I went there in my private capacity to find out how I can get involved and how to serve in my own little way.

There are a few things I can emphasize:

1. There is a growing number of pediatric cancer patients in the region. Only a few obtain medical attention due to any or a combination of these reasons: ignorance or misappreciation of the illness, economic, geographical access to health facilities or health workers.

2. More than 70% of those who get medical attention eventually drop out and don't come back for medical attention. Where are they? Chances are, they have gone ahead or waiting for their time to expire.

3. Many parents accept the proverbial "death sentence" ascribed to cancer, not knowing that many pediatric cancer cases are curable.

4. There is a dearth of health facilities and support systems for cancer patients. More so, the aspect of caring for the care-givers is a neglected need.

Thus, the importance of this social gathering among people with a common predicament. Who else but those who underwent similar circumstances could share their insights and experiences in a passionate, compassionate and soothing manner. The sharing even goes beyond these things and embraces aspects like resource generation, patient care, sibling and parental role and involvement, as well as understanding of the disease and the diseased.

I am very appreciative and thankful for the efforts made by people and organizations to support cancer patients and their parents. I thank the Rotaract, the De Molay, the Kythe Foundation and some individuals for this event. But more so for their loving hearts. Helping others and helping them help themselves go a long, long way in alleviating the hardship of those undergoing this difficult experience. Providing the needed support do not only enhance the chances for healing. If the ultimate healing inevitably comes, then the patient goes with dignity. And, let's not forget: care for the caregivers as well.

Looking Forward

23 September 2007. It’s just two days from now and Yam celebrates the first year anniversary of her bone marrow transplant. Sounds remarkably good? It is.

Two days ago, she was discharged from a five-day hospitalization at the Asian Hospital in Muntinlupa after 13 days at the San Pedro Hospital, Davao City. She had intermittent fever and persistently low blood counts. Relapse was ruled out while still at San Pedro. Infection with the dreaded cytomegalovirus was ruled out on her third day at Asian. She still has low blood counts which she needs to recover from before going back to school, perhaps in a week.

Setbacks are not uncommon to patients like her. After transplant, she bounced back fast. She engrafted two days earlier than usual, was discharged a week earlier than most, and was cleared to travel back to Davao three weeks earlier than the 100 day mark. It was generally smooth sailing from here with few setbacks. These included the need to administer valganciclovir to control cytomegalovirus two days after her initial discharge last October, an involuntary muscle contraction due to ion imbalance last February, hives in July, a bacterial infection in August, and this period.

Looking forward to the first year anniversary, was it really worth all the risk? We considered two views. First, that of medical science:

"The hope with a transplant is to cure the underlying disease," says Christopher Bredeson, M.D., M.S., assistant professor of medicine at the Medical College of Wisconsin. "Chemotherapy, on the other hand, is not a cure..." Relapse rate in chemotherapy patients is very high, while in the transplant patients it is much lower. That would seem to make a transplant the treatment of choice -- no question. But there is another factor to consider: there is up-front mortality with BMT. Between 20 percent and 40 percent of patients die of complications directly related to bone marrow transplant. One of these is Graft-vs-Host Disease (GVHD) which occurs when the cells from donor bone marrow attack the host cells it considers foreign.

"It's a balancing act," Dr. Bredeson says. "In a young patient, a transplant may be worth the risk for long life. In an older patient who says 'I just want to see my grandson get married in the fall,' it may not be."

Our view when we were in the maelstrom of decision-making was perhaps typical of parents. We just wanted to do everything and anything for our daughter. We didn’t leave things to chance, we didn’t relish the thoughts of, “what if…”, “why didn’t we…”. We confronted the situation like it was war, and we were determined to win. Or if we were to lose, then we lose with our boots on.

Now, more than a year after deciding on the transplant, we feel secured of our decision. The setbacks, preventive measures, periodic check up and treatment our daughter needed to go through after the transplant are but integral consequences of that decision.

Today, we are looking forward to relish our daughter’s long, meaningful life, and to better appreciate the "why" of all these things. These, to us and the countless good Samaritans who helped us, is the heart of the matter.

Cool, Calm, Collected

18 September 2007. Are these what we really feel? Or what we are trying to feel? I guess it’s more of the former than the latter.

Two days back, Dr. Jeannie Ong, Yam’s pediatrician in Davao, briefed us on Yam’s bone marrow aspirate analysis. It was negative for blasts, the immature blood cells that can rapidly multiply to a leukemia level. But her bone marrow remained hypo-cellular, meaning it is not yet producing enough blood cells. The first was enough to allay our fears of a leukemia relapse – one that was not ruled out until this result came out.

This result was also sufficient to make us feel this way – cool, calm and collected. But are these not the feelings that aptly describe one who musters courage under stress and distress?

While Yam was at San Pedro Hospital, her energy level spiked up each time Kuya John visited her from his work in Polomolok. Upon our arrival at the airport, her eyes sparkled at the sight of her Kuya Joseph. Last night, she silently listened that her Kuya Joseph listed her as his dependent in his group health insurance and her hospitalization will be partly paid for by this. And when her Ate Janice arrived from school to pay her a visit and spend the night with her, her lips widened with a smile. She then rose up and bantered with her until they retired for the night.

Looking at all these, Mom and Dad just sat down, observed them do their thing, looked at each other, silently convinced why they felt this way.

Composed, Unruffled

Sunday, 16 September 2007. A year ago, two days off the exact date, our daughter Yam was admitted at the Asian Hospital where she had bone marrow transplant. Today, she is discharged from the San Pedro Hospital, Davao City and immediately flies off with Mom and Dad to Manila to be admitted at the Asian Hospital. Again!!!

For 13 days, she was confined and treated at San Pedro for fever and weakness due to depressed blood counts. But the real cause can not be ascertained after several and repeated laboratory tests, and two blood cultures. On the course of hospitalization, she had mouth sores and intermittent fever attributed to fungal and possibly bacterial infection. Medications were focused to control both but the viral aspect needed specific information. Suspicion is rife that the cytomegalovirus (CMV) is the culprit. But the test for this dangerous virus for immuno-compromised patients like Yam must be done within an hour of extraction. And such test was not available in Davao City.

Looking back, Yam had a successful bone marrow transplant on September 25 last year. She had an amazing comeback, engrafting in 12 days, getting out of the hospital in 35 days and being allowed to fly back to Davao prior to the critical 100 days post-transplant. She had an imbalance that manifested in involuntary muscle contraction in February and was medically cleared to go back to school in June. She then had a mild set back due to hives in July, a week of bacterial infection in early August, and then this 13-day hospitalization. Each setback episode was invariably preceded by a somewhat hectic schedule of activities which could have exposed her to an infectious environment under a stressful condition.

Always a fighter, Yam gathered her strength to enjoy the trip to Manila. Dad had to make arrangements with airport management for her to bypass normal passenger protocol and given the necessary assistance as a medical patient. Yam’s physician at Asian Hospital, Dr. Francis Lopez, personally arranged for her hospital admission upon arrival on a Sunday. Her Kuya Joseph was at the airport to meet us upon arrival.

Upon seeing the Asian Hospital’s distinct façade from afar, she displayed feelings of nostalgia. We breezed through admission, and then were assisted to Room 813, which is directly above Room 713 where Yam stayed for more than a month last year. Both rooms are fitted with a special ventilation system and an ante-room for bone marrow transplant patients, with the amenities of a five-star hotel. She went around the room, looking for familiar details, tried out the automated mechanisms of her bed, pointed to the built-in medical accessories, then lied down to wait for her nurse. In a few minutes, a couple of nurses came over with one so familiar that she blurted out Yam’s name immediately. The place seemed like a home to Yam as she identified with it quite intimately. But behind the comfort of the place, I would exchange this with the tough and adventurous home I’ve known from childhood - if only because of the health condition attached to the former.

Before sunset, Dr. Allan Racho, Yam’s pediatrician visited. He had comforting words – that Yam doesn’t appear toxic and her vital signs appear normal, except for the persistently depressed blood counts.

Overall, we feel composed and unruffled. Times like this repeatedly test our priorities. And indelibly cement into our psyche the things that really matter to us.

Anxious...

13 September 2007. It's ten days now. Yes that's how long my daughter Yam is in the hospital.

Since being back to school in June after a bone marrow transplant in September last year, we had been very careful and protective of her. Last month after a rather active week, she was to join an essay writing contest. On our way, she suddenly wept saying we can't proceed. She wasn't feeling well. On the days ahead, she was at home nursing bacterial infection.

Two weeks ago, she spent a night with her closest friend. Then the week that followed was an exam week. On Saturday of that week, she joined the regional science quiz where her team placed third overall. The quiz was in nearby Panabo City. On our travel back home, she just lied down at the back of the van, seemingly energy-sapped from the long day's activities. She immediately slept after reaching home. The following day, she was nursing a fever. When we brought her to her pediatrician on the succeeding Monday, we were immediately advised that she be admitted.

Her lab analysis shows that her blood counts were low. Her blood culture yielded no distinct bacterial growth. But in a couple of days, she developed mouth sores. It was the candida fungus. She was then subjected to viral tests but no conclusive resuls as yet.

Mean time, she remains in the hospital. Suspicion of a possible cytomagalovirus is at hand, but the test must be done in Manila since it must be done within an hour of blood extraction. Yam's condition improved a bit, her mouth sores more manageable. But her blood counts remained low.

Anxious. That's the normal feeling for a not so normal situation.