Frances H. Kakugawa
Hawai‘i Herald Columnist
Omoiyari . . . Think of others first and good karma will return to you. — Frances H. Kakugawa
Dear Readers,
There were no questions in our mailbox this month, so it’s story time once again. Sometimes we need a good story to lift up our lives — and Hawai‘i is a good place for such a story to unfold.
This past May, I walked into the Basically Books bookshop in Hilo to do a short lecture, after which I would be signing my new book, “You Are Somebody.” There to greet me were Christine Reed, the shop’s owner, and a younger woman who had a little boy with her. I couldn’t help but notice that the two women had tears in their eyes and there was a box of tissue on the counter between them. The young woman turned to me.
“Do you remember me?” she asked.
Is she a former student? A caregiver? Those thoughts ran through my head as I looked into her face with a puzzled look. She looks familiar, I thought to myself. I shook my head, puzzled, until she lifted the little boy and explained.
“This is Loa. I’m Alicia . . .”
“Loa!” I exclaimed. “Loa . . .” I repeated, reaching out to take him into my arms.
I had met Alicia three and a half years ago at the Sacramento airport. We were both waiting for the airport shuttle when I noticed that she was not dressed for our December weather. This is our story.
“You’re traveling light,” I said, noticing that she had no luggage — not even a heavy winter jacket.
“I had to rush and had no time to pack,” she explained. On the shuttle ride to her destination, Alicia told me her story.
I had a normal pregnancy and natural birth, but as soon as my son Loa was born, you could see the doctor’s worried face. Other doctors came to explain that Loa had something on his head — about a 4 x 4-inch in diameter lesion on his head. Within a few hours, Loa was medivac’d {medical evacuation aircraft) to Kapi‘olani Medical Center on O‘ahu. Since I had just given birth, I was not allowed to fly with him and flew to O‘ahu a couple days later. Loa was diagnosed with AOS (Adams Oliver Syndrome), which is a rare genetic disease, and there are only 150 cases worldwide. Loa was placed in the NICU (Neonatal Intensive Care Unit) at Kapi‘olani Medical.
The plan for Loa at the time was to keep his lesion wet. He always wore a bonnet on his head, most of the time to cover his lesion. They changed his wound dressing about four times a day. After the skin granulates, they planned to graph skin over it. Besides his lesions on his head, Loa was progressing very well in the NICU. He was one of the fattest babies, because he loved to eat and to be held.
On Dec 12, 2011, during Loa’s evening visit, nothing seemed different at first; he ate, burped and had his diaper changed. He was alert and awake when I picked him up. Then, suddenly, he turned pale and white. I noticed blood.
All the doctors and nurses came running. They tried to place an IV in him, but were unable to find a vein at first. Finally, they found it and began to give him blood fast. Normally, it takes about one to two hours to give them blood, but since he lost it all so fast, they pumped Loa with blood within 20 minutes.
Everything seemed to go downhill after that — all his organs were shutting down, he began to have seizures. He was placed in a medically induced coma and was placed on a ventilator. I was told so many times that he was going to die. I was advised to call my pastor and have them pray because he needed a MIRACLE.
We consulted with many doctors and it was determined that Loa needed a flap surgery to close the lesion to prevent more bleeding. NO doctor in Hawai‘i wanted to touch Loa since he was in such a critical state. Then we found Dr. Granger Wong in Sacramento, Calif. Loa needed to be medivac’d there, and that in itself was a challenge, because for Loa to fly, he would need to be stable enough to do so. So we PRAYED like we never PRAYED before. I mean, there was nothing else I could do physically for him. I couldn’t even touch him! All I could do was PRAY . . . there were times when I sat in that hospital and prayed all day.
Finally, today (Dec. 22), after prayers and insurance hurdles, he was sent to California. I flew separately because there was no room on the plane for me since he needed an RN, RT and the doctor and flying crew. When I left Hawai‘i, I had no idea how Loa was doing. I still don’t even know if he is even alive.
They warned me that it was a six-hour flight and that if anything happened over the ocean with Loa, they probably wouldn’t be able to save him.
When the airport shuttle driver dropped Alicia off at the medical center, he told her, “I will have my family pray for you. I have a small son, too.” I gave Alicia my phone number.
On Dec 24, 2011, at Sutter Memorial Hospital, Loa was taken in for his surgery. Surgery went well, but we were far from good. Doctors worried that he could get an infection in his head, since his lesion was open to air for so long and bacteria might have gotten under the skin and Loa would die. More PRAYERS and PRAYERS and, day by day, he got better, and on Jan. 1, 2012, after being sedated and on a breathing tube, he was able to breathe on his own. We were able to get medivac’d back to Hawai‘i to Kapi‘olani Medical Center on Jan. 26. On Jan. 28th, we were discharged from the hospital and flew back to Hilo.
At the bookshop, I heard Alicia continue her story to Christine. It was a part of the story that I had totally forgotten.
“Frances brought me warm clothing; she even made Spam musubi and other local foods. She made Christmas for us by bringing in a decorated tree on Christmas Day. She was there for us. We see her as our special angel.”
“I did that?” filled my thoughts as I listened in on her conversation with Christine. I do remember visiting Alicia and Loa throughout their stay. I saw Loa connected to tubes and his head covered with bandages. I honestly didn’t feel confident about his recovery — a newborn infant connected to so many tubes. Can medical science pull off a miracle? I wasn’t too sure.
“We speak of you to Loa all the time,” Alicia said. “We tell Loa he has an angel aunty. We don’t want him to forget you.”
“Tell him I’m his Aunty Fran,” I said.
Alicia looked at me and said, “If ever you need help with anything — anything at all — my family and I will be there for you.” She handed me a bag filled with local gifts. Loa reached out and put a lei around my neck . . . and then, like any other curious 3-year-old, he checked out Aunty Fran’s books.
Frances Kakugawa was her mother’s primary caregiver during her five-year journey with Alzheimer’s disease. A native of Kapoho on Hawai‘i island, she now lives in Sacramento. Frances has melded her professional training as a writer and educator and her personal caregiving experiences to write several books on caring for people with memory-related illnesses. She is a sought-after speaker, both in Hawai‘i and on the Mainland, sharing strategies for caregiving, as well as coping with the stresses of caregiving.
She will be back in Hawai‘i in late October to deliver the keynote address at the Sunrise Ministry Foundation’s fourth annual “Journeys to Wellness” conference at the Community Church of Honolulu (2345 Nu‘uanu Ave.) and to participate as a panelist. Frances will be speaking on “The Healing Power of Voice and Silence.” For more information on the conference, or to register, contact Manu Nae‘ole or Ron Yamauchi at (808) 839-6910, or email sunriseministryinfo@gmail.com.
