Warning: this is a really long post.
I was home from church on Sunday with the stomach bug. My mom brought in the suitcase and told me that since I have time, I can read through some the papers. I have never read through the medical records before. I've always wanted to, but have hesitated because it brings up unwanted emotions that I keep in a bottled up place in my mind and heart. But these past few days I've been going through these old pictures, records, and videos, bringing up many memories and emotions that spanned from December 2002-September 2004. Because I want my posterity to know about my brother, I am going to summarize a little bit of what he went through up to his bone marrow transplant, then my feelings afterwards.
Kuki was diagnosed in January 2003. He started having bloody noses, mouth sores, and bruised legs that got worse in December. The drs did blood tests and confirmed that he had ALL- Acute Lymphocytic (or Lymphoblastic) Leukemia. This is a rapidly progressing cancer that starts in the white blood cells (these are what fight infections in your body) in the bone marrow. Two days after he was diagnosed a central line was placed in his chest and his first chemotherapy began. He had 3 more chemo treatments within the span of the next 2 months, along with lumbar punctures with injections of a strong drug and 10 radiation treatments. At the end of April, it was said that he was in remission, but only after the lumbar injections. Because the first round of chemo alone didn't work, the drs recommended a bone marrow transplant to achieve long-term survival (50-60% chance of long-term).
The drs did a preliminary search in the donor bank, and there was one complete match found (there were about 6 million people in the donor bank in 2004. That number today is 10.5 million). My parents and siblings and myself were only a half match. He received a bone marrow transplant on July 30th (or rather, peripheral blood stem cells- a donor's blood is taken, run through a machine that separates the stem cells from other blood cells and collected, then the rest of the cells are returned to the donor. Those stem cells are then placed into the central line of the patient) after a 6 day series of total body radiation to wipe our his old bone marrow, 2 days of a medicine that stops production of DNA, and one day of rest before the transplant. After the transplant there was a bout of graft-vs-host disease which is a immune reaction to the cells- meaning skin rashes, dry skin, dry mouth with sores, abdominal problems. Not all people get this, but my brother did. He was given prednisone to try and control it. He was given many bags of platelets off and on.
Interesting fact about the bone marrow transplant- The donor had blood type O+. Kuki's blood type is A+. After the transplant, Kuki's blood type would then become O+, but things like his hair and saliva would still be A+. I remember us all joking that if there was some type of murder scene or something, a person with a transplant could really be posing as "2" people if there were blood and hair left behind.
He had his transplant and had a rough recovery. He started progressing and he was in remission. Hallelujah!
I left on my mission to Los Angeles on Dec 3, 2003. I stayed in the MTC for 4 weeks, then left for LA on Dec 31st. At some point at the end of February I got a call from the mission president one night to let me know the bad news that my brother's leukemia returned. I was with my second companion in my first area, staying at the LA temple apartments (I served part time at the visitors center). I remember crying myself to sleep that night and not being to focus very well the next few days. My family continued to send me news about Kuki's health. It was slowly declining. I know my family didn't tell me the whole story of his condition- they were trying to protect me. They told me bits and pieces, but pictures speak louder than words. I would get pictures off and on of Kuki and I could tell he wasn't doing well. Seeing my brother in a good "healthy" state before I left, to what I saw in pictures, was a drastic change.
Maybe around May? I can't remember...I got a call from the mission president (our presidents changed 3 months into my mission) that I needed to meet with him in his office. I went, thinking I was in trouble or something. Come to find out my parents called him and let him know that Kuki's health was declining and he wanted to talk with me. He told me I could go into one of the offices and use the phone and call him.
My hands were shaking. I didn't know what to think. I didn't want to call, but I wanted to hear his voice and speak with him. I called him. He asked how I was doing, how the missionary work was going, and that he was proud of me to be serving the Lord. He told me that he wasn't going to get another bone marrow transplant because he just can't go through that process again, and so that meant he wasn't going to get better. His voice was calm and clear as he bore me his testimony of the restored gospel, the importance of the Atonement and how he lived these past months with appreciation of Christ and His sufferings for all of us, both physically and spiritually. He shared a spiritual experience that he had that is much too sacred to write, but it had me sobbing. He then told me that he is going on a mission too, that he is needed on the other side of the veil. There are many people waiting for him and it's his time to go and teach them. He asked me to come to the funeral and speak when it was time. I told him I would. We spoke of other things but I really couldn't think very well after what he told me. I told him I loved him and we hung up. I was heartbroken. I wanted to go home. I was scared. I wanted to scream and punch a hole in the wall. Pull out my hair. Curl up into a little ball and die.
I asked my mission president if I could go home. He said no. I was needed in LA. I told him my brother wants me to go home for his funeral. He told me we would talk about it later.
I didn't know what to do, what to say. My companion and I went back to the apartments and I was in a state of numbness. I don't think we went to our area to work that day. I couldn't function.
I moved along in mission life, being busy in the work. I kept getting letters and pictures. I asked my mission president if I could speak with Kuki off and on throughout his declining health and he said okay. I would call Kuki maybe every 6 weeks. He would send me letters and always draw some funny cartoon or picture. His handwriting started getting harder to read, until one day he sent a letter with a picture that I couldn't understand what it was. I got permission to call him and I did, and he couldn't really talk much anymore he was so weak.
During this time, I met with the mission president in the mission office about 3 times. I asked, begged him to let me go home to the funeral. He kept refusing my plea, quoting scriptures, and telling me that it would pretty much be no good to go home, that I am needed there in LA. It seemed like a selfish act, to go home instead of serving. I did not like his answers, and I kept asking to meet with him (hence 3 times). Finally he called me into the mission home, so I knew something was different. His wife was there and she led me into the living room. The 3 of us sat there and talked a little bit, then the mission president told me that I could go back to Utah when the time comes, for 5 days, then I'd return to LA. He told me the reason for not letting me go, is that missionaries usually do not come back. I told him I'm not like that, that it would disappoint my brother if I did that. So we parted, and I didn't know what emotion I was supposed to have- happy? sad? Happy that I could go home, yet sad because it would mean my brother had passed away. I was constantly in a state of torn emotions.
I was a full field sister (not working in the visitors center for 6 months) and got a call on September 4th (Sat) from the mission president telling me that my brother had passed away. He told me I would be going home in two days and to talk to the senior couple in the mission office about the details. I called my parents afterwards. We cried. I wanted to be there right then, but I had to wait.
I was dumbfounded. I didn't know what to do. My companion and I went tracting, which ended up with me crying on a stranger's doorstep. We went home and I cried myself to sleep. We didn't work anymore that day. Sunday was a blur.
I left for Utah on Monday. I was eager to get home. It was weird being on the plane without my companion. People thought I had completed my mission and I was going home. I wish I was. My parents met me and we cried and I remember holding my mom's hand tightly as we walked to the car. It was so good to be home and be with my family. We got home and saw my sister and her kids. It was so good to be back home.
We went to the funeral home later that day to dress Kuki in his temple clothes. It was a horrific experience. A big shock of reality that my brother was indeed gone, and that his body went through so much pain and suffering. He was so skinny- bones and skin. This is why I shy away from holocaust pictures and stories and books about cancer victims...lands too close to a deeply saddening picture of my brother in my mind. My mom handed me socks to put on his feet, but I couldn't do it. I sat in a chair and cried.
His viewing was Tuesday. I put a Bob Marley sticker on his casket (he loves reggae) and slipped a letter inside. There was a video of memories of his life playing while we stood and hugged people. There were a lot of people that came to pay their respects. It was nice seeing family and friends that we hadn't seen in a long time. Many of my extended family came- aunts and uncles from Arizona, Hawaii, California. It was a mini-reunion under a very sad situation, but it was nice to be united.
The funeral was Wednesday. Hagoth, Dore', and myself spoke (I spoke on the atonement). My dad and his brother sang. A cousin and her husband sang. One of Kuki's brother-in-laws spoke. There were a lot of people at the service.
I went back to LA on Friday and I could see how missionaries wouldn't return. I didn't want to go back. I wanted to stay in the comfort of family support. I knew I couldn't stay and cried getting on the plane. While I was gone it was transfer week, but I stayed in the same area. I had the same companion, but also got another one- we had a 3 person companionship, and that was a very smart move. Sister Tu'ionetoa (Tonga) and Sister Watanabe (Japan) were the perfect pair to help me transition back into missionary work. I slept on the couch because I couldn't sleep well.
Seeing this through the eyes of a sister was bad enough, but I would not want to experience this as a parent or wife. My sister-in-law, Maile, is such a strong person. She took care of my brother through all of this. She was working while Kuki was going to school and he watched their two children, ages 3 and one, at the time my brother got diagnosed. Maile's insurance was amazingly great, thank goodness. I don't even know how much everything ended up being, but the insurance covered a lot of the cost. She became a single parent of an 18 month old and a 4 year old. She is amazing, that's all I can say. And my parents- we haven't really talked much about how they survived all of this. I think it will bring up too many sad memories. Memories that we don't want to remember. Maybe one day I will ask them, but not right now.
I knew I had to go home for the funeral so I could have closure. If I stayed in LA I would probably have been a mental case. But if there is one thing I regret in this life, it's that I should have gone home while my brother was alive, rather than when he passed. How much I would give to turn back time and relive those moments and make another choice and receive that kind of closure, talking face to face. But it's too late, the moment is gone. I've cried a lot these past few days, going through everything, but it's a good reminder of my goal, to try and live a life as well as I can and look eagerly to the future to see Kuki again- happy, pain free, and smiling.
I found the video in the suitcase that we showed at Kuki's viewing. It's in two parts on here because I couldn't upload the entire thing on YouTube. It's pretty long, but at least I have it on the web now.
(Part 1 finally works after Youtube had to remove two songs off of it. Sad because it was two good ones- Somewhere Over the Rainbow at the beginning and a Bob Marley song...oh well. Video isn't the same without them, but at least the pictures are still there.)
ps- if you have interest in registering as a bone marrow donor, let me know and I can help you with that :).
