Family faces boy's illness with fortitude, faith, love

By Tanya Bricking
Advertiser Staff Writer

Roland Jose is 15 and has the eyes of an old man.

Marvalee Kealoha and her son Roland Jose have struggled through five difficult years since Roland was diagnosed with a brain tumor when he was 10. Cory Lum • The Honolulu Advertiser

In the five years since he was diagnosed with his illness, Roland's family has sacrificed much — including a home of its own and even Christmas presents. His mother left her job of 18 years to care for him, and that has taken away their financial stability.

But Roland's illness has not taken their hope.

"My hope for the new year is to have a place of our own and a van to transport Roland to his many doctors appointments and hospital stays," said Roland's mother, Marvalee Kealoha, 47. During Roland's illness, Kealoha has turned to family members, welfare and charity for support. Roland and his mom and siblings are staying with relatives in Nu'uanu.

Roland's New Year's resolution is as much for his mother as for himself. He doesn't want to be a burden to her. He wants the family to return to the pride of independence.

His story may best be told in his own words:

It all started on a bright, sunny Saturday afternoon. I was 10 years old at that time. I went to a park nearby to play football with my older brother and some friends. We were playing for a while. As I was going in for a touchdown, a boy tackled me and his knee hit my head and I became unconscious. When I came to, I did not remember anything, so my brother and friends took me home to my mom. When my mom saw me, she did not like what she saw. She then took me to the emergency room at Kaiser Hospital. They took me right away to the CT (computerized tomography) scan room. As my mom was waiting for me, she knew something was wrong when she started to see a lot of doctors go into the CT scan room, so my mom went into the room. ... They told my mom that they found a black spot in my brain, and they said that it was a tumor.

Marvalee Kealoha was head steward at the Royal Hawaiian Hotel, where she had worked for 18 years. But her son's brain tumor changed everything. It wasn't a matter of taking a few sick days to be with her son, she said. It was life-changing for them both.

My mom had a very hard decision to make. ... She explained that the tumor was a progressive tumor, that it was pressing on my optic nerve. That if it was not taken out now, that I could become blind and that I could also die because the tumor can do other damage to my brain. My mom also told my family that the surgery was very dangerous, that anything could happen. ... My mom looked at everyone and told them that the decision should be left up to me because it is my life. I looked at my mom and told her that I wanted her to help me decide because I was afraid. We ended that meeting with a prayer. My mom asked Jesus to help us with our decision. ... The following week my mom took me to see Dr. Robinson. My mom told Dr. Robinson that we came to a decision to have the surgery.

Roland's doctor suggested a surgery date of May 19. Kealoha said she asked for it to be postponed: May 19 was Roland's birthday, and if anything might go wrong, she didn't want it to be on that day. So they waited two months, but by that time, the tumor already had grown about an inch, and Roland's headaches were so bad he could hardly lift his head.

My family was all in and around the waiting room waiting for me. Four hours came and went and I was not out of surgery. (Another several hours passed and the surgery ended, but the doctor said the tumor had grown larger than expected.) The tumor had fingers that had grown into my pituitary gland. He said he tried to get all of the tumor, but he was unable to. He said that he got 98 percent of the tumor out, the other 2 percent he had to leave it because if he tried to take it out, I would have died.

Kealoha paced the hospital hallway. When it was over, she said the doctor told the family to be strong. Roland was in a coma.

I was in a coma for four days. During that time, my face swelled up, especially my eyes. They called it raccoon eyes. My eyes were so swollen that the doctors had to force them open. My head was bandaged up. ... In Pediatrics Intensive Care Unit, I had nurses around the clock. They as well as the doctors were in and out of my room. My room was very small so it was very crowded with the IV poles and machines. My mom never left my side.

Roland's mother had always been a faithful woman. She sat in Roland's hospital room and did the only thing she could think of to get them through this: She prayed.

On the fifth day I woke up and the first words I said were, "Hi, mom, I'm hungry." My mom called the nurse and the doctor and they came running in, checked me over then went to call Dr. Robinson.

Marvalee Kealoha turned to singing to comfort her son. As he seemed to come back to life, something was different. It was as if Roland's aging had reversed and he was a baby again.

The tumor destroyed my short-term memory. I could not remember things. Things that was so automatic was not there. Example, I could not brush my teeth, wash my face, bathe myself, put on my clothes, you know, simple things. I could not remember things that was said to me five minutes ago. But despite the problems that was happening to me one by one, my mom was always there. She never left my side, always praying, always singing gospel songs.

As the days went by, Roland's mother had to get her priorities in order. Health and family quickly rose above money and career.

Now, my mom had a job but she told her boss about my situation and they gave her time off. Then about the third week that I was there, Dr. Smith after examining me, asked my mom if she could talk to her. Dr. Smith told my mom that she would have to quit her job because I would need 24/7 care when I leave the hospital, or to get someone to take care of me. My mom, without hesitation, went to the phone, called her boss and told him that she had to quit. ... My mom told him that she can always find another job, but she can never get another son.

Marvalee Kealoha became a stay-at-home mom, teaching her son to tie his shoes again, how to live again.

September came around and I was not able to go to school. I had a tutor who came to my house three times a week, two hours each day. She got me work to do from my teachers. I struggled in all of my subjects mainly because I could not remember what I was being taught.

I could not wait to go to school. That last Monday in November came around and I went to school. I was so excited. Some kids at school teased me and treated me mean, but my classmates stuck up for me. They told the other kids off and told them that how would they like it if they were in my place. I stayed in school for half day and when I went home I was exhausted. Although I missed a lot of school time because I was not feeling too well and I went back into the hospital, I continued and tried to keep up with the rest of my class. I was surprised when my classmates voted for me to be one of the kapu bearers in the May Day court. I felt very honored.

Marvalee Kealoha applied for welfare and benefits for her son. The welfare check was $712 a month, but it wasn't enough to meet the rent and other bills. They would have to move.

Summer was a rough time because my family and I became homeless. We moved in with my mom's brother and his family in Wai'anae. My uncle let us stay in one of his kid's rooms. It was very hard living that way.

Roland's mother wasn't used to taking handouts. She was used to being a stable wage-earner. She prayed that this, too, would pass.

It was a year since I had the surgery. My medical condition did not seem to be improving. I was still battling my diabetes, which was harder because of all of the heat in Wai'anae. My seizures were still coming. My vision did not improve. My headaches were still there, every single day. ...

My second year since the surgery has not been that much of a difference. I am still battling with my diabetes. My seizures have somewhat decreased. My vision did not improve. I am still having headaches. I am still going in and out of the hospital and I am still trying to go to school. ...

It is now three years since my surgery. Still not much change. My family is still very supportive of me. My doctors still cannot find an answer for my medical conditions.

Marvalee Kealoha borrows her oldest son's car to shuffle Roland around. She hates being an inconvenience on people. But she said she has learned not to ask why she was dealt this hand.

I have been in the hospital every month so far since December of 1999, battling with my new problem, which is fluid retention. My legs get so swollen that I can hardly walk. I also have like water blisters over my legs.

But through the will of God, I am still alive. It was not my time to go. I still have a purpose on Earth. I am very fortunate and blessed to be alive. Through our lord and savior Jesus Christ, he is watching over me. Aloha ke akua.

Sometimes, Roland gets jealous watching other boys play football or frustrated when his niece asks him to play. He tires too easily and has to use a wheelchair. But he dreams of becoming a happy-go-lucky boy again who can run and play outside, if only he can break free from the old man who has taken over his brain. It is a dream his mother shares.

Roland, a sophomore at Kailua High School, hasn't been back to school since he got out of the hospital in November. He hopes to return after winter break. He says he might study to be part of the medical profession to find cures for children like himself. Although it's too soon for Roland Jose to make life plans, he holds fast to his New Year's resolution: to keep praying for something better.

Reach Tanya Bricking at tbricking@honoluluadvertiser.com or 525-8026.