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Thursday, July 18, 2019

One Year…and Counting

I don’t know how I feel about the term “cancer survivor.” I feel like I dodged a bullet somehow.

Yes, I HAD breast cancer. It was removed during mastectomy surgery one year ago this morning. Clear margins. No lymph involvement (that they could discern). I did not need chemotherapy, nor did I require radiation. I am so grateful. Those women (and a few men) who have had the entire package of treatment … now, I might call them survivors. That is tough stuff.

The entire process did teach me something about prayer and faith and my relationship with God. When taking a spiritual gifts assessment, my “faith” score is abysmal. But I dare say it went up a few notches since my breast cancer diagnosis.

I counted on the prayers of believers—especially those who have been through this before me. They know the emotional roller coaster. They know the potential risks and outcomes. And they “lowered me through the roof” or “dragged me to the Throne Room.” When going in to surgery, I had an uncanny peace that wasn’t the result of drugs but of the prayers of His warriors.

I thank my daughter for being with me through it all, always giving me a good laugh, and making me a fight song list … it alternately had me dancing and crying.

I thank my sister, who took time and expense to be here from California. She encouraged me and did the things for me I wasn’t allowed to do after surgery.

I thank those “Pink Sisters” who paved the rocky road before I got to it: Wendy Carmichael and Janine Schaap. And all those other women who seemed to come out of the woodwork, who’d gone through the same. It is truly a sisterhood.

I thank my husband, who was stronger than I could be, and who loved me (loves me) through the process and disfigurement.

I thank my medical team. They’ve seen it all and yet made me feel like I was the only person they had to care for!

I thank my God and Savior, the Healer. Songs like “Wave Walker” and “Overcomer” and those too numerous to mention, reminded me of His steadfast love for me no matter what the outcome.

So, this is the first anniversary out of cancer.


Father, what do You want me to do with the next year?


Monday, July 15, 2019

Epilogue

From Take Care of My Child…for a While by Joyce Sawyer

Later we learned the autopsy showed the cancer had involved the breathing control center. It was a quiet, peaceful way to die. I was so afraid he would choke to death or feel strangled as he had felt so many times before, and had been so frightened.

Ricky’s vital organs and cancerous parts were given for research, in hopes some other child would be helped by what was found. We learned another child was in the hospital with that same kind of cancer and was indeed benefiting from the added knowledge.

[Rhonda here. If you have been touched by my mother’s story, perhaps you’d like to consider giving a donation to the American Cancer Society or make sure you are listed among those who are Organ Donors. But the most important consideration is … do you know for certain where you will be after you draw your last breath? How about those in your family? Do you know you will see them in heaven? Jesus is the ONLY Way, Truth, and Life. Trust Him alone to secure your eternity.]

Chapter 21: Never Die in July

From Take Care of My Child…for a While by Joyce Sawyer

…Then on July 11, at about four Sunday afternoon, Dale came in to the living room and said Ricky’s eyes were rolling back and he was having convulsions.

Dale was really shaken; it was terrible to watch and we knew death was close now. We planned to have Ricky die at home, but we realized we couldn’t handle this. He needed relief from pain and he couldn’t keep the pills down. He no longer had control of his bodily functions. He needed the help of a doctor and the hospital.

Our doctor at McClellan [Air Force Base in northern Sacramento] had moved on Friday, so I called the doctors at Stanford Children’s. Dr. Wilbur was away at a convention and Dr. Long was on vacation. I felt like all our medical supports were gone. Dr. Serota was in Philadelphia and his replacement had not yet arrived at Travis [Air Force Base in Fairfield, California].

I called Mather Emergency, an Air Force hospital east of Sacramento. They said they would try to reach a doctor there to admit Ricky, but to bring him over as soon as possible.

Next, I tried to get an ambulance. Our emergency room said they only had one ambulance available and it couldn’t leave the base. I said, “What do you mean? My child is dying and you can’t send an ambulance?”

“No.” They had no authority to leave, just in case there was an accident on the base. They had three ambulances, but only one was operable.

I called the head of the McClellan clinic. He was out of town. I called his assistant. He would be back after six o’clock.

Now Ricky was screaming with pain in between convulsions every few minutes. We just couldn’t keep the pain pills down him. I was becoming frantic. I called our emergency room again and said I would call the base commander. He had said that if there was ever anything he could do, just call. The sergeant said there was no need to do that. There would be an ambulance at our house in fifteen minutes.

Dale rode in the ambulance with Ricky this time and the girls and I followed in the car. Ricky had several convulsions on the way. Dale was wringing wet when they got to the hospital—a twenty minute ride.

Ricky was taken immediately to intensive care. An IV was started and the doctor arrived to prescribe Phenobarbital to control the convulsions. The doctors hadn’t warned me about those. They came as a surprise. The cancer was in the brain stem. I should have known it would travel up, as well as down, the cord.

I said I would spend the night next to Ricky’s bed. The corpsman brought a noisy plastic recliner that only had one position. The nurse brought a blanket. Ricky was restless and cried “Mama” off and on. I would jump up and rub his head or hold his hand or massage his legs and feet. It was a long night.

By morning he was stabilized. He was moved to a private room just outside ICU. Dale came over and I went home to rest and pick up a futon to stay the night in his room. We were told this was not allowed in the hospital, but under the circumstances it would be alright.

We took turns sitting by his bed for the next four days, watching the pain return and more medication needed. Now he was paralyzed from the neck down. We had to move his arms and legs. Sometimes it was impossible to make him comfortable.

He would say, “Move my legs like an Indian. Put them on the ceiling; put them in a circle.” Just when I would crawl into bed, he would cry to have his legs rearranged.

He was barely sipping juices and chocolate milk. I wondered how long he could last this way. His mind seemed to be clear. He asked what time it was and which day it was. He asked me to hold his hand or rub his head, and would call me to make sure I was close by.

When the tray came up on Thursday noon, I asked him what he would like: juice, jello, or chocolate milk. He said, “One at a time,” and he took some chocolate milk and went to sleep. Those were the last words he said.

The chaplain had been in the day before and asked if I was ready to let Ricky go. He said maybe Ricky was holding on because I couldn’t release him. I thought about that and I prayed, “I love little Ricky, but he is in so much pain and so uncomfortable. I know he will be better off with You. I’ll let him go; You can take him.”

After lunch, I sat next to the bed reading a book. The aide came in and said it was time to turn Ricky again. She felt him and said, “I think he has stopped breathing.” She went for the nurse and I held his fingers in mine. They were still warm but his face was white and his lips were turning blue.

I said, “Goodbye, Ricky. I love you. You can live with God now and run and play baseball and football. We will see you pretty soon.”

The nurse came in and listened to his chest and said she would notify the doctor. She filled plastic gloves with ice and put them on his eyes. We had arranged to donate his eyes to the eye bank. They came within the hour and thanked us for his eyes. There had been an emergency and a little child was waiting for them. Sometime I would like to meet the child who is seeing because of Ricky’s eyes.


Dale came over and I told him Ricky was alright now, and he said, “I know, but I’m not.” We called Dan and my parents and the other relatives.

The memorial service would be Sunday evening. We decided to show three slides of Ricky; one when he was little, one when he was three, and one of his last Christmas. We also put a table in front of the chapel with his favorite toys and his baseball trophies on it. Ricky’s whole team came to the service in their Cardinal uniforms. We found a tape to play “It’s a Small World,” since Ricky enjoyed that so much at Disneyland.

I had told the airman at the chapel to pick out a bulletin cover to use. When I saw the picture on the cover at the service, I was amazed—it was my dream! A boy running through a field of tall grass. I had dreamed that while we were visiting Disneyland. One night I saw Ricky running away from me, through a field of tall grass, and his dog was running toward him. He stopped to pick him up and, laughing, ran on.

I didn’t know what it meant. He was to have had the operation to fuse the vertebrae in his neck. Maybe it meant he would be running without the brace and be well and healthy. Only I had the feeling that God was telling me something, getting me ready. When I saw that bulletin cover—I knew this was the meaning of my dream.

The poem on the following page was read at the memorial service, and expresses some of our feelings:


Understanding

“I’ll lend you for a little time a child of Mine,” He said,
“For you to love while he lives, and mourn for when he’s dead.
It may be six or seven years, or twenty-two or three,

But will you, till I call him back, take care of him for Me?
He’ll bring you his charms to gladden you, and should his stay be brief,
You’ll have his lovely memories as solace for your grief.

I cannot promise he will stay, since all from earth return,
But there are lessons taught them there I want this child to learn.
I’ve looked this wide world over in my search for teachers true,
And from the throngs that crowd life’s land, I have selected you.
Now will you give him all your love, nor think the labor vain,
Nor hate Me when I come to call to give him back again?”

I fancied that I heard them say, “Dear Lord, Thy will be done,
For all the joy the child shall bring, the risk of grief we’ll run.
We’ll shelter him with tenderness, we’ll love him while we may,
And for the happiness we’ve known, forever grateful stay;
But should the Lord call for him much sooner than we’ve planned,
We’ll brave the bitter grief that comes and try to understand.”

~[although Mom attributed this to “author unknown,” I just discovered that it was written by Edgar Albert Guest in 1930, the year Mom was born.]

Epilogue to follow

Chapter 20: The Last Days at Home

From Take Care of My Child…for a While by Joyce Sawyer

More and more it hurt for Ricky to be moved, so he spent more and more time in bed and less in the living room.

I called Dan to see if he would like to spend some time with Ricky. He came and slept on the floor in Ricky’s room. He played games and talked and rubbed Ricky’s head, which seems to ease some pain.

One afternoon Ricky was on the futon in the living room and he started to scream that he was being choked and he couldn’t get his breath. The doctor just lived one block over and was home at the time. He came right over. He increased the pain medication.

After that, Ricky got quiet. But in a little while he was crying again. I asked him what was the matter. “I’m not going to make it, am I?” I told him we had done everything we could; the doctors had done everything they could, and there just wasn’t any way to kill the cancer. But he would go and live with God and be strong and healthy again, and be able to play baseball and football.

He said, “I don’t want to go. I don’t want to leave you.”

We both cried.

As the pain increased and the paralysis progressed, Ricky came to the place where he was ready to die. I told him I would hold his hand and then Jesus would hold his hand. It would be that easy.

Now he needed pain pills every two hours day and night. I set the alarm. I barely went to sleep and it was time to get up again. He would call “Mama!” and sometimes it would only be an hour.

It is terrible to watch your child die.

Chapter 21 to follow

Sunday, July 14, 2019

Chapter 19: The Miracle Dog

From Take Care of My Child…for a While by Joyce Sawyer

Ever since Brandon had been killed, Ricky had been asking for a dog. Since he was back and forth in the hospital, we didn’t see how we could manage it, but we finally promised that when he came home after the operation he could have his dog.

As soon as we came home this time, he began asking again, so we started the search in earnest. I didn’t see how I could take care of a puppy and Ricky, too, so the dog had to be housebroken already.

Ricky thought he wanted a beagle like Snoopy. One of the teachers at school had some beagle pups, but they weren’t indoor dogs. I said I would call her back. Several other people offered dogs and we said we would check them out.

Then Dale walked in at suppertime with the cutest, softest six-month-old Terrier-poo in his arms. Ricky cried, “Benji!” And that’s just who he looked like. I asked Dale where he had found the dog. He said he walked in to the Highlands Pet shop and explained our situation and what we needed. The owner said he had a dog that had just been returned. He was housebroken, well trained, gentle and loving—just what we needed. He gave the dog to Dale free of charge for Ricky.

Diane with “miracle dog” Benji
Ricky just loved his new dog, and it was everything he wanted or needed. It slept on his bed and lay where Ricky could pet him. He seemed to sense when Ricky was in pain or his skin was sensitive and he would move down on the bed a ways. He came when Ricky called him and he lay quietly all night. He was one of those miracles we all needed so badly.

Chapter 20 to follow

Chapter 18: Back to the Hospital


From Take Care of My Child…for a While by Joyce Sawyer

Too soon it was time to go home and get ready for the next trip to the hospital. I had to pack the trailer again. This was to be a longer trip because of the operation and recovery.

Ricky began complaining of his neck hurting. I thought it might be because of the long trip and being tired, but it seemed I could see a lump developing.

Ricky continued to complain of the pain. I gave him Tylenol, but it didn’t seem to help. Then on Tuesday, he asked to go back to the hospital. I knew he must really feel desperate if he was asking to go back. He was supposed to go on Thursday anyway, so I called to see if we could come a couple of days early. They said yes, to bring him right in.

Of course, there is no “right in.” It takes three or four hours. Anyway, we put Ricky in the back seat and fixed him as well as we could and went to Stanford Children’s.

They started an IV and started medication to ease the pain. The lump had doubled by now and was evident at a glance.

The doctor examined, X-rays were taken, and soon it was determined that the cancer was back and more of the vertebrae were missing or crumbling. The surgeon said he could not chance an operation through the cancer and there was no bone to fuse.

Ricky was relieved at not having to go through another surgery, but he didn’t grasp at the time what that meant.

In the meantime, Dale had gone home and pulled the trailer down, thinking we would be staying for a long time.

Now Dr. Wilbur called us in to his office. “There is nothing more we can do. We have used everything available to us. Any further radiation would be fatal. All we can do from now on is make Ricky as comfortable as possible and his life as full as it can be. You are welcome to stay here or you may take Ricky home. It is yours and Ricky’s decision. Of course, he will have to stay here until we can control the pain and the lack of bladder function.”

We talked about staying or going home. Ricky wanted to go home. I said I would manage at home as long as I could. The doctor said the disease was unpredictable, but at the rate of growth, he figured Ricky had a week or ten days.

I was stunned. That short? I knew he felt he was being strangled and he was frightened and panicky at times. He also was in pain—but a week?

We packed our things for another long ambulance ride. We said goodbye to everybody. I knew Ricky would not be back.

When we arrived at home, we put the futon on the living room floor so Ricky could watch color TV and be where the family was.

Dale had also gotten him his own black and white TV to be near his bed. He could still work it with his good hand. Already he was losing control of his bladder and, at times, he couldn’t move his legs. The lump was half the size of his neck now and, when the medicine wore off, he felt choked.

Chapter 19 to follow


Chapter 17: On to Disneyland

From Take Care of My Child…for a While by Joyce Sawyer

The counts were starting to drop, but nothing drastic. Ricky showed no signs of infection, so we prepared for the big trip south.

The first night we stayed with relatives in Fresno. It was an easy four hour run. The next day we arrived at our trailer park in Orange. The next morning I called Stanford Children’s Hospital to see about the results of the latest blood work. The news was not good. He had no white cells at all; the hemoglobin was low, and the platelet count was less than 12,000 (50,000 is normal). Just a bump and he could bleed.

Now Ricky’s temperature was 102. What to do? Here we were. Ricky was so eager to go to Disneyland. All the arrangements were made. OK, I’ll give him some aspirin. We will be careful and WE WILL GO.

No one knows with what fear and trembling we made that decision. A wheelchair was provided at the gate and one of the guides gave Ricky a stuffed Mickey Mouse with a Mouseketeer hat. We went everywhere a wheelchair could go.

Ricky laughed at the bears in Country Bear Jamboree, especially the old hound bear singing, “Blood on the Saddle.”

But the best of all was “It’s a Small World.” We went down the exit ramp and they held the boat while Dale carefully lifted Ricky in. It was a beautiful, delightful ride we will always remember.

Ricky was beginning to get tired so we went back to the trailer to rest. Ricky’s temperature was back to normal.

That night I dreamed I saw Ricky running through a field of tall grass.

The next day we went to African Safari. Ricky could see all the animals from the car window by sitting in the tilted front seat.

Then we had to go to March Air Force Base for more blood work. The cells were building back.

After looking at a lot of brochures, we decided that the Hollywood Wax Museum would be the best place for a wheelchair. Universal Studios would be fun, but there was too much “on and off” traveling there, and the tour was too long. The wax museum was interesting. Ricky liked the Star Trek best of all.

On to Edwards Air Force Base and more blood work. The cell counts were looking good now.

Ricky loved seeing Dan again and Jason, our two-year-old grandson. Dan was stationed at Edwards AFB. Jason didn’t know what to make of Ricky in that cast and brace. We went on a picnic and Ricky lay on a blanket on the grass.

Life was fine.



Chapter 18 to follow

Saturday, July 13, 2019

Chapter 16: A Trial Run


From Take Care of My Child…for a While by Joyce Sawyer

First we had to see if this was really feasible, so we decided to take the trailer out on Memorial Day for a trial run. 

Ricky’s blood counts hadn’t started to drop yet from the chemotherapy, so he was healthy and feeling fine. He was even using his crutches some.

We loaded up the trailer, only this time we included a wheelchair, urinal, bedpan, thermometer, Tylenol, and the medicine (Beta-dine) for cleaning around the pins in his head.

Dale carefully lifted Ricky into the front seat of the car, with the seat tilted way back. Ricky was comfortable that way for a while, and then he needed to change and lie on his side on a sheepskin in the back seat. Of course, that way someone had to sit clear to the side and hold his feet. He thought that was a good joke.

Well, we traveled half a day in the mountains looking for a place to camp, but, of course, everything was filled up that weekend. We finally found a trailer park in Grass Valley. There was a little stream among some trees and an outdoor shuffleboard court. We set up camp and then played some shuffleboard.

Ricky did amazingly well, and we considered the whole trip a success.


Chapter 15: No Evidence of Disease

From Take Care of My Child…for a While by Joyce Sawyer

After the April chemotherapy, Dr. Long called us into his office and told us that Ricky’s X-rays and tests had all been gone over carefully and, as far as they could tell, there was no evidence of disease.

Now it was possible to think about a fusion of the vertebrae in the neck and eventually, maybe at Christmas, Ricky could be out of the brace and walking around like a normal ten-year-old boy.

We were all overjoyed. Ricky began talking about his bionic neck and how he would be playing football.

He had one more course of chemotherapy, just to make sure, and then he could go home and get ready for his marvelous operation. The first seven vertebrae would be fused, using good bone from the upper thigh, and then he would be in a striker frame. It would be worth the long, hard recovery.

We talked it all over with Ricky. He wanted to go to Disneyland before his operation. We knew that after the fusion there would be months in bed and very little movement, so we went ahead with plans for a trip to Disneyland.

The hospital wrote letters and made arrangements with the special tour people at Disneyland. We would be able to drive right up to the gate and would be given a wheel chair there.



Chapter 16 to follow

Chapter 14: Games and Such

From Take Care of My Child…for a While by Joyce Sawyer

Ricky loved to play games when he was feeling well. In fact, that was a good indication of his health. He would say, “Let’s play a game.” Usually it was Aggravation. He won almost every game.

He kept a little blue notebook with scores in it, such as “Mother- 0, Ricky-50,” indicating the number of games lost and won. If a game was set up, the nurse would say, “I see Ricky is feeling better; he’s going to beat his mother again.”

Sometimes we played Rummy or Crazy Eights. I learned to carry a deck of cards in my purse so we could play when he was waiting his turn for a treatment or to see a doctor.

When the movie Jaws came out, Ricky had to have a Jaws game. I looked everywhere for that game. It took weeks, but I finally found it. Any member of the hospital staff that happened by was roped into playing Jaws…even the doctors on rounds took a turn.

Ricky was also a good artist. His favorite subjects were football and Snoopy. He drew or painted the Steelers and the Cowboys in various plays. They were very realistic. Sometimes he had trouble getting the feet just right. Once he did a mural for his hospital room of Lynn Swann and Terry Bradshaw. He had use of only one hand at the time, but he used large bold strokes.

Drawing Snoopy was good therapy for him. He had Snoopy in an ambulance, Snoopy getting IVs, and Snoopy in surgery. Every so often, Woodstock appeared in a picture, too.

Somehow Ricky accumulated a stuffed dog collection. It really didn’t start out that way.

In April, when we were home from the hospital, Dale took Ricky for a walk in his wheel chair and Brandon, his dog, was running along beside him. Suddenly Brandon dashed across the street and at that moment a car hit him. Ricky saw the whole thing, and it was a terrible emotional experience for him.

It was after that that he wanted a stuffed dog that looked like Brandon to take to the hospital and to sit on his bed, or to cuddle up under his chin. I was able to find just the right one for him with big floppy ears and a soft body.

Of course, he wanted a Snoopy dog and a dog like the one across the street that was licorice colored. Anyway, all these animals turned into quite a collection.

Ricky also had a whole bedroom full of plastic people or dolls. Dale didn’t like the idea of a boy having dolls, but Ricky enjoyed using his imagination and moving these characters around.

He had the Six Million Dollar Man and the Atomic Man, plus all the people from Batman. Then he had the Johnny West set, adding an Indian or a horse at every birthday or holiday. He finally got the covered wagon for the set the last time he was at Stanford Children’s Hospital. We had said he could have it when he came out of surgery the last time. When he learned he wasn’t going to have the operation, he said, “Can I still have my covered wagon?” Dale bought it for him and set it up on the stand next to his bed with tape on the wheels so it wouldn’t keep rolling off. The wagon was the envy of everyone around.

Because Ricky loved football so much, Dale mentioned him to Bill Reid of the San Francisco 49ers at a banquet for the Fellowship of Christian Athletes. Bill said he would be glad to visit Ricky at the hospital. I hadn’t been told anything about this, so when he and his wife arrived at the hospital, I asked everyone, “Who’s Bill Reid?”

He was very nice about my not knowing him. He said he had a football to present to Ricky signed by all the players of the 49ers. It turned out that Bill and his wife had been exposed to the measles so they could not come in to the hospital. They had to give Ricky the football through the window. Ricky thought that was funny, but he treasured the football. He would take it out of the plastic covering to show it to the doctors and nurses and the other children. They weren’t allowed to touch it though. Then it had to go back into the plastic bag and into its box.

Every time Ricky was home from the hospital, he insisted on going to the Little League games in his wheel chair. This year he had been put on the Cardinals team. He had a red baseball cap and red uniform pants. He couldn’t get the T-shirt on over his cast. He wore the hat and pants to the games.

Even though he didn’t play in one game, he was given a trophy at the end of the season.

Chapter 15 to follow

Friday, July 12, 2019

Chapter 13: A Dream


From Take Care of My Child…for a While by Joyce Sawyer

A flashing red light. The machine is malfunctioning! I awoke with a start. What a terrible dream. 

Then I jumped out of bed. The machine was hidden from my bed but the light WAS flashing. The alarm had been turned off at some earlier time. I turned off the machine and ran for the nurse. The fluids had run dry and blood was being pumped out of Ricky. He had been on an electric IV machine for days.
I rescued my boy. No, the dream had done it. Thank you, God, for a dream.

I was often asked by the other mothers staying at the hospital how I could sleep at night and be awake instantly; how I managed without alcohol or drugs or even aspirin. I always said that it was because I believe in God and He is with us and He cares for us.

He helped me through the long hours—Ricky’s torturous treatments and drug therapy, and the constant emotional strain. 


Chapter 14 to follow

Chapter 12: A Call to Arizona

From Take Care of My Child…for a While by Joyce Sawyer

When I had learned Ricky was to have surgery, I called Mom and Dad in Arizona where they were camped at a trailer park for the winter. I explained what Ricky would be going through and that I really needed help. I was becoming tired and there were many weeks ahead of hospital care. I felt I would need to be home once in a while and would need to get away from the hospital for short periods.

When the ambulance returned to Children’s Hospital, Mom and Dad were there. I fell into Mother’s arms and cried and cried. Then I was able to go back to Ricky’s room and spend the night, waking every two hours to help to turn him and his heavy, wet cast.

Those weeks of recovery were hard weeks. Dad was able to move Ricky better than any of us. He helped turn him in bed and later lifted him in and out of a wheel chair.

Mom helped keep the parents’ Day Room clean, besides sitting with Ricky so I could get away now and then. Dad started a macrame class for mothers there. When my parents left, that whole side of the hospital missed them.

When Ricky could be moved to a wheel chair, we took many, many walks through the halls—all of us taking turns at the pushing. Rhonda and Diane came with Dale to visit as often as they could.

Friends came from Sacramento and from the McClellan Chapel. Those visits made a welcome break in the hospital routine.

Dr. Robert Tyndall and his wife, Mildred, made special arrangements to come to the hospital while we were there. They had also visited us in Children’s Mercy Hospital in Kansas City. Bob is the head of Chaplaincy Services for the Disciples of Christ and headquartered in Indianapolis. It is nice to know that people care. 

Sometimes I would begin to feel sorry for myself and ask Dale why he couldn’t come more or stay longer. Of course, someone had to earn a living, but when you are tired and emotionally drained, you don’t think too clearly. 

The end of March we were all able to go home. It was nice while it lasted, but by Easter Ricky was in the hospital again. When he was well enough, there was school right at his bedside and there was occupational therapy. We drew pictures and made all sorts of things out of clay. We also did string art.

There was physical therapy. That wasn’t much fun, but it was necessary. He was regaining the use of his left hand again.

In the evening there were all kinds of games and movies and fun things to do. At Easter time, Minnie Mouse from Disneyland came to a party. There was even an Easter egg hunt. Ricky found several from his wheel chair. In fact, the hospital would have been a wonderful place to be if the children there weren’t so desperately ill.

After being home, I would hesitate to ask about children I didn’t see, for fear they had died while we were away, and many times that is just what had happened.

The 18-month-old boy in Ricky’s room died while we were there. That was hard on both of us.

“Mama, why doesn’t God make all of us well, especially the babies?”

“I really don’t know, Ricky. I wish I knew the answer.”


Chapter 13 to follow


Chapter 11: Lincoln’s Birthday


From Take Care of My Child…for a While by Joyce Sawyer

We arrived on Lincoln’s birthday [1976]. Dr. Wilbur, the head of the Oncology unit, met us at the door. I must say, I was impressed.

Stanford Children’s Hospital is a live-in hospital. Unlike the hospital in Kansas City, the parents all eat together in the Day Room. The food is sent up in big containers. Any child, able to get out of bed, can eat in the Day Room with his family.

Parents also do as much of the care as they wish. This included giving medications and watching the IVs. the charts are always open to the parents. If there are any questions about what is written, a doctor or nurse will answer it. There are no secrets in this hospital. Sometimes I wished I didn’t know so much; the knowledge was painful.

Now there were days of tests. Sometimes these were painful, and Ricky called the technicians “stupid idiots.” At first, I was really embarrassed, but then I realized Ricky needed some outlet for his frustration and pain. I was sure the hospital staff had heard worse than that.

At times I would tell Ricky he could scream as loud as he wanted, but that he couldn’t move. Lying still was so crucial in getting those X-rays.

A few times people came in to Ricky’s room wanting information, or blood, or permission for another procedure, and they would ask, “Where is this boy’s mother?” I was startled by the question at first, but then realized that unless they had read the chart, they would not know that this Japanese boy had a Caucasian mother. I was afraid Ricky would be hurt by these remarks, but he took it as a joke and winked at me.

By the next week, all the tests showed no cancer in any part of the body … but the neck area. The neck vertebrae were all involved by this time.

Dr. Long called Dale and me into an office near Ricky’s room and explained that Ricky’s case had been discussed thoroughly by the cancer board, and it was decided the only thing left to do was to put Ricky in a halo cast and then try a different chemotherapy.

“New things are being discovered all the time, so just hold on.”

The halo cast consists of four screws drilled into the skull, attached to a metal ring around the head, with four metal posts attached that go onto a full body cast. Not a very pretty sight, but it had to be done. We were assured that Ricky would not feel the pins in his head. They would have to be cleaned around the pin twice a day to avoid infection.

The surgery was set. It was to be at the big Stanford Hospital. Dale came down to be with us. Darwan Mann from the Palo Alto Christian Church came to give us moral support. After that he visited us regularly in the hospital and made arrangements for me to get to church on Sunday mornings.

People would ask, “Who is that man who comes to see you and Ricky?”

I would say, “That is my minister.”

Then they would ask, “How did he know you were here?”

And I would answer, “I called him.” They were always surprised at that.

The surgery went well, but it took longer than we expected. Darwan had to leave and Dale had to leave for home. Soon all the daytime hospital help left, too. I stayed to ride to Children’s Hospital in the ambulance with Ricky.

I waited and waited. I tried to find someone to tell me if Ricky was still in recovery or if the ambulance had left without me.

It was past time for me to eat, and I had run down to the next floor to get a sandwich from a machine. I thought maybe I had missed him. Finally, a Red Cross worker told me that Ricky was still in recovery.

When they wheeled him out, I had to put my head down to keep from fainting. I thought I was ready, but it was still a terrible shock to see those pins screwed into Ricky’s head and those steel bars attached. I swallowed hard to keep from being sick, and I took hold of Ricky’s hand and walked beside the gurney to the ambulance.

Chapter 12 to follow

Wednesday, July 10, 2019

Chapter 10: More Treatment

From Take Care of My Child…for a While by Joyce Sawyer

In July, Ricky became worse again. An infection set in and his body had no defenses. He lay in the hospital for days hanging between life and death, but finally the antibiotics began to work and the fever broke. His own blood cells began building back.

We began making plans for school and the third grade. We didn’t know if Ricky could be in a regular class because of all the days he would miss. He might be always falling behind.

We decided to try it anyway. The teacher understood about Ricky and she explained to the class, especially about his loss of hair again and about the fragile condition of his neck. She also had a cot in the room so he could lie down when he needed to.

Things went pretty well until after Christmas. Oh, there were a couple of days when I sent Ricky to the bus and he didn’t actually get on. He decided to lie down behind our house instead. The first time this happened, I was frantic. I called the neighbors and we searched the whole area, thinking something terrible must have happened to him. It turned out he was afraid to go to school because the children had been teasing him. On the bus someone pulled his wig off and had thrown it around.

I had another talk with his teacher and the principal of the school. After that, everyone tried to make Ricky feel comfortable, but, of course, he knew he was different.

Toward the end of January, we noticed Ricky was holding his head with both hands, like he was trying to keep it from falling off. Even when he was eating, he would take the food and then his hand would go right back to his forehead.

When Dr. Serota saw Ricky this time, he called Stanford Children’s Hospital and made arrangements for Ricky to be admitted the next day. By this time he was in almost constant pain.

We took the first of many three- to four-hour-long ambulance rides from Sacramento to Palo Alto. The kids at the hospital thought it was great that Ricky came in an Air Force ambulance, but I was just glad to get there and begin on some treatment of relief for him.

Chapter 11 to follow

Chapter 9: Parents’ Group

From Take Care of My Child…for a While by Joyce Sawyer

Dale and I had felt the need for a parents’ group for a long time; other families that were experiencing what we were. There wasn’t such a group in our area. Dr. Serota said he knew there was a real need for this type of group, particularly among military families, where relatives are often miles or states away.

When we started working on this project, the Red Cross and the professional medical people gave us very good support, but it still took months to get the group going.

We finally had our first meeting. To our surprise, twenty-two people came. We discussed what help we could be to each other and what topics we would like to discuss at future meetings. The main thing was being able to express our feelings and frustrations and being able to learn how other parents dealt with the problems of children with cancer.

The group met monthly and we felt it was a help to all of us.

Chapter 10 to follow


Chapter 8: Little League


From Take Care of My Child…for a While by Joyce Sawyer

We got home at about the time everyone was talking about baseball. When the announcements came out about Little League, Ricky was determined to play. He kept asking if I had signed him up. I was asking myself, How is this boy ever going to play ball when he gets so sick every four weeks?

But it was true that after the initial vomiting, he was in pretty good shape. So—I got his required birth records and went to the committee and explained about Ricky’s condition—that on certain days he wouldn’t be able to play, and he couldn’t tolerate the hot sun because of the radiation to his neck.

Every day Ricky watched the bulletin board to see what team he was on. The lists finally came out. He was on the Twins team.

The next Saturday we went to the baseball field and got his cap and yellow T-shirt, with his name in one corner and the Twins written across it. From then on, it was off to every practice a half hour early and ready for every game.

His team won almost every game and the whole family held their breath every time Ricky was at bat or the ball headed in his direction on the field.

On May 19th [1975], he was given a small trophy as the outstanding player for that game. The next week he was the most valuable player. Ricky had a wonderful coach who really encouraged the boys with praise. Every boy had his turn at bat, too, no matter how the game was going.

In June we began to notice that Ricky was having trouble holding the bat, and he turned his whole body when he swung at the ball, instead of just using his arms.

“Ricky, can you feel your arm and hand?”

“Most of the time, but I gotta finish this season.”

“I know, but the doctor has to have a look at you again.”

The X-rays showed a piece of the vertebra, C-3, was missing. After all the chemotherapy of the past year and the radiation, the cancer was still eating away. The only thing to do was stronger doses of chemotherapy and more radiation; as much as he could stand.

Now the baseball season was almost over. Ricky went to the final game, but he couldn’t play. He was too weak. He had lost 10 pounds again.

When Ricky walked on the field in his uniform, with his neck deep read and leathery from the radiation burns, all the boys cheered and the fans cheered. Ricky just looked stunned, but then he broke into one of his big shy smiles.

The Twins were the number one team that year and everybody received a baseball trophy on a marble base.

Chapter 9 to follow

Chapter 7: Life is Fine…for a While

From Take Care of My Child…for a While by Joyce Sawyer

“Mom, I need someone my age to play with. I’m the only little kid in this family.”

“That’s right.”

“Why don’t you adopt a brother for me?”

“Just like that.”

“Sure.”

“It isn’t that easy.”

But soon Ricky had found a picture of a cute little seven-year-old boy in the Holt newsletter from Eugene, Oregon. He seemed just right. He was a Korean/black combination. While Ricky was thinking up a name for his new brother, I was writing for more information and for the necessary forms to fill out. It was only later we realized we could not carry through with our requests.

Now for a while, life was fine. Ricky began to gain weight and get his strength back. His hair grew in and he seemed like the old Ricky again.

Then one afternoon in April [1975], Ricky showed me some small blisters along his ribs. It was spring and he had been rolling in the grass, so I didn’t think too much about it. But the next morning there were more blisters and they itched.

I called Dr. Serota and told him Ricky had these funny blisters on his chest, sort of like poison ivy. He said he’d like to have a look at him and if they turned out to be anything unusual we would have to stay a day or two. So—I packed a little suitcase with a couple of books for Ricky and my knitting and one change of underwear.

Dale said he would go with us this time and see that we got settled.

After Ricky was seen, Dr. Serota suggested we leave right away for Stanford Children’s Hospital. He said, “It looks like Ricky has herpes zoster, the same family as chicken pox, only it lives in the nerve trunk and is very dangerous to cancer patients sine they have no resistance.”

I thought, Just those few blisters?

Stanford was experimenting with a new drug, Interferon, and it might stop the spread of the disease. Without this drug, it could go to the brain or other organs. It had already been fatal to four children at Stanford that spring.

I signed the paper to start this new drug, even though the side effects were unknown. What choice did I have, really?

Because of the extreme danger to the other children with cancer, Ricky and I were put in strictest isolation. We wore gowns and masks and everyone coming in to the room did the same. Everything came in on disposable plates or containers.

We had a TV to help pass the time, but this drug program took eight days. I began to make up games, like rolling up socks into a ball and throwing them at the waste basket, or playing catch with them. We also drew pictures and made up silly stories.

I had to wash clothing by hand, since I had just brought enough for two days. Ricky didn’t feel at all sick, and after the third day, no new blisters appeared, so I asked if we could go outside. Covered in our masks, gowns, and surgical gloves, we carefully crawled out the window. We weren’t allowed in the halls.

It was fun running around on the lawn. Of course, we couldn’t touch anything that another child might handle. We were very careful.

The time still dragged by. I wondered how the POWs ever made it for two years in isolation, but then they weren’t cooped up with an eight-year-old boy.

Chapter 8 to follow

Chapter 6: The News

From Take Care of My Child…for a While by Joyce Sawyer

It was Wednesday. I was getting dinner ready. Rhonda and Dan weren’t home from work yet, but they would be at any time and they would be as hungry as bears.

The phone rang. Dr. Waldman said he had the results of the biopsy. I held my breath.

“It is a solid tumor in the lymph node.”

“Is it benign?” (I had had two breast biopsies and the lumps were benign.)

“No, this is malignant.”

“You mean cancer? Ricky has cancer?”

“Yes, that’s what I mean. He will have to have surgery on Friday at 8:00 to remove the rest of the lump.”

I hung up and sat down. Dan walked in and asked, “What’s the matter, Mom?”

I said, “Ricky has a tumor. It’s some form of cancer. The operation is Friday morning. We need to call your father.”

Somehow we ate supper. No one was hungry. I tried to call Greenland, but there were no commercial lines going there. Then Rhonda called Bruce, a young lieutenant friend of the family. Bruce called his friend who was working the switchboard at the base, and he got Dale on the AutoVon [a military phone link]. How terrible to tell a father that news over the screechy lines of the phone.

He would try to get home by Friday. First I must get the Red Cross to verify the emergency so he could be released to come home.

There were no planes coming back to the States from Greenland at that time of the week, but a Danish friend of Dale’s, working at SAS, got him on an English jet going to Vancouver, BC. Then he caught a flight to Seattle and on to Kansas City. Bruce picked him up at the airport. He arrived about 10 AM Friday morning. What a trip!

The doctors decided to postpone the surgery until Monday in order to do all the bone scans and liver scan first, to see if the cancer cells had traveled to any other part of the body.

Everything else was clear. It seemed to be contained in the neck area. Dr. Holder operated Monday morning. Reverend Richard Person of the Belton Christian Church sat with us through the hours of surgery. Finally the surgeon came to the waiting room.

“I got as much as I could. It was outside the lymph gland and in the surrounding tissue. It was wrapped around the nerves. That’s the reason for the shoulder pain. It is plastered to the vertebrae. I got as much as I could. I couldn’t get it all. I’m so sorry.”

And there were tears in his eyes. He cared. He tried. But he couldn’t get it all.

Chemotherapy would be started in the next few days and radiation within the week.

“Oh, my baby. My poor baby.”

Dale had to go back to Sonderstrom and get things ready to turn over to the next chaplain. Now I wished he didn’t have to go. Why didn’t he just stay with us? I was tired and emotionally drained, and now I was angry, too. Surely the Air Force could carry on without him when his son was so ill.

Now we were assigned a nurse social worker. She helped explain the new procedures and she went with Ricky all the places I couldn’t go. She was there to answer questions or to just talk. She also provided play therapy for Ricky.

I knew I couldn’t live at the hospital day and night and keep everything going at home. Rhonda and Dan took turns sleeping next to Ricky’s bed so I could go home and get some rest, but they had their jobs, and besides I needed moral support. Especially during the times when Ricky’s life was at a low ebb.

I called Mom and she said of course she would come. Then followed weeks of back and forth to the hospital, 25 miles each way.

Ricky went into a deep depression. He wouldn’t eat or open his eyes or speak to anyone. Finally, as a last resort, a little boy was moved in to Ricky’s room. He was having plastic surgery on his lips. He had already had nine operations because of a hair lip and cleft palate. Ricky opened one eye to see what all the commotion was about.

Before, everyone had been kept out of the room because of Ricky’s lack of immunity and the fear of germs; but Ricky’s emotional state had to be improved regardless of germs, and a little crying boy was the answer.

At the end of August, Dale came home and it was time to move again. We were assigned to McClellan AFB in Sacramento, California. Rhonda would go back to college and Dan would stay in Belton and enter Longview Community College. Diane would go with us, even though she hated to leave her friends and dreaded starting a new school. The thought of crossing the country with a sick child almost paralyzed me.

Ricky had to have chemotherapy the day before we left. We were staying in a motel. He threw up all over the bed and we had to call and ask for clean sheets.

By this time all his hair was gone, but he had a wig arranged for by the leukemia fund and shaped just right by a kind barber, free of charge. Ricky wore the wig in public. It looked almost exactly like his real hair.

Ricky developed a bowel blockage on the way across the country. He got sicker and sicker. By the time we reached Sacramento, things were desperate. We called the pediatrician at McClellan AFB and he made arrangements for us to enter Travis Air Force hospital. There we met one of the kindest and best doctors we have ever had—Dr. Fred Serota. He got Ricky back on his feet and started him on his monthly chemotherapy protocol.


Chapter 5: Stand up Straight!

From Take Care of My Child…for a While by Joyce Sawyer

“Ricky, stand up straight!”

“Dan, have you noticed how Ricky lowers that left shoulder and walks sort of like a crab?”

It seemed like I was always telling Ricky to stand up straight these days. I was afraid his back would grow crooked. He told me it felt better that way. I asked him where it hurt, and he said along the side of his neck and down his shoulder blade.

I went to school and asked his teacher if the class had been doing any unusual gym activities. Yes, they had been doing somersaults and rolls. Well, that explained it. He had rolled wrong and pulled that shoulder. The teacher noticed Ricky had been going to the restroom and had been putting wet paper towels on his neck. I decided to get him to a doctor and see if something was pulled out of place.

“I’m sorry, the doctor isn’t in, but the nurse will examine Ricky.”

“Thank you.”

“I can’t find anything wrong. Put heat on it and if it doesn’t clear up, come back.”

That was April [1974]. I borrowed a heating pad and put heat on his neck and shoulder day and night, but it didn’t help. Now there seemed to be a lump under the skin on his neck.

Back to the doctor.

“Let’s get a throat culture, and we will give him a dose of penicillin, just in case. Come back in ten days.”

In ten days Ricky wasn’t any better. In fact, the lump was larger. The test for strep was positive, but the doctor didn’t like the looks of that lump. It was hard and it should have been going away with the penicillin. Maybe it was bacteria—any number of things when the glands are swollen.

“He should have a biopsy at Children’s Mercy Hospital. I’ll make all the arrangements.”

By now, Ricky had lost 10 pounds, even though he was eating well. He didn’t want to play outside, just lie on the floor and watch TV or play with his little toy men.

We went on a nice picnic on the 4th of July. The kids all had fun paddling around the pond in paddle boats.

The next morning we checked in to the hospital. There would be several tests before the biopsy and many case histories taken. Ricky hadn’t been sick since he was a tiny baby. Oh, maybe an ear infection once.

“No, we don’t have a cat and he hasn’t been scratched by one.” What did that have to do with anything? “Well, sometimes cats carry a disease that makes the glands swell up. We are eliminating all the possibilities before we put Ricky through surgery.”

Well, that is good to know.

“We have determined all the things it is not, so now it will be necessary to do the biopsy on Monday.”

“Can I take him home for the weekend?”

“Oh, yes. Just have him back on Sunday night.”

“I will. Can I just leave my futon (a Japanese tri-fold foam mattress) here someplace so I don’t have to carry it back and forth?”

“Sure. That will be fine.”

This was a live-in hospital. Parents could sleep in the room with their child and eat in the hospital cafeteria. There was a parents’ washroom also. Lounge chairs that made into beds were available, but there were never enough to go around.

Since I am [type 1] diabetic, living in caused some problems. I had to store my insulin in their drug room and have a nurse get it every day. I also had to get to the cafeteria in order to eat on time, otherwise I would become dizzy and pass out. Ricky didn’t need a mother lying around on the floor someplace. I also needed a snack at bedtime to hold me through the night. The only thing available after dinner was snack machines in the basement of the hospital at the end of some dark corridors. I tried to bring something to eat to my room before visiting hours were over.

Ricky came through the biopsy fine. Rhonda waited with me. Nothing could be determined right away. The slides had to be read. I could take Ricky home the next day and the doctor would call. I noticed Dr. Richard Waldman was on the staff at the hospital, so I went by his office and left a note that Ricky was on the third floor. The Waldmans had lived two houses from us at Richards-Gebaur. Ricky played with their children, and Dr. Waldman did Ricky’s checkups at the base.

Now he walked in the room to check on Ricky after the surgery. He said Ricky seemed to be doing fine. He would call me about the results of the biopsy. I thought, How nice to have an old friend be Ricky’s doctor. It made Ricky feel better, too.

We brought Ricky home and catered to his tastes for milk shakes and ice cream; nothing hard to chew.


Chapter 6 to follow



Tuesday, July 09, 2019

Chapter 4: An American

From Take Care of my Child…for a While by Joyce Sawyer

It was now time for Ricky to be naturalized. My parents came to visit for the month of December, so they were in on the ceremony. I was sorry Dale couldn’t come home. I had Power of Attorney so I could sign for him.

We all went in to the crowded court room in Kansas City. There were people there from many countries. Each one was given a small flag, a Declaration of Independence, and several other items, by the Daughters of the American Revolution.

We waited and waited. Over an hour went by. Ricky was getting restless as he continued to roll up his flag or wave it around his head. The old judge finally arrived, and the attendant said, “All rise.” Ricky refused to stand up. What had gotten into that child?

He said, in a loud whisper, “I’m not standing for any late, old judge.” I pulled him to his feet with firmness. The judge rambled on and on about how he had been a page in the Senate at Jefferson City and a lot of other facts that Ricky cared nothing about.

Finally, the names were called and Ricky was presented his naturalization papers. There was a reception, but after all that time, Ricky was in no mood for a reception.

On the way home, Ricky told us he was no longer a Japanese, he was an American. We tried to explain that he was both, but he insisted—he was just like the rest of us. That was fine. He would get it all sorted out when he was older.



Chapter 5 to follow

Chapter 3: Back to the States and off to School

From Take Care of My Child…for a While by Joyce Sawyer

Before coming back to the States, we went to Expo '70 in Osaka. Diane was anxious to have a vacation because she had missed the last trip with the family. She had entered the hospital in May for the fusion of twelve vertebrae and had been in the hospital until October, and then continued to be in a hospital bed at home until January. She was still in the Milwaukee brace.

At Expo, several people turned to look at our family, with a Japanese child in a stroller. One couple even told us they knew where his parents were. I guess they thought we had found a lost boy and they were going to help out. We learned the Japanese word for adopted (YO-no) in order to explain that Ricky was really ours.

In August [1970], we took the ship President Cleveland to San Francisco. Dale drove to Richards-Gebaur AFB in Missouri, our new assignment. The children and I visited relatives on the coast in order for everyone to meet our newest family member. Then we flew to Kansas City where Dale met us at the airport.

Ricky was always shy around people other than family. It was difficult to leave him at the base nursery. He would cry and cry. As long as one of the family did the babysitting, it was alright, but he was a very insecure child.

It was time for Ricky to go to kindergarten. He didn’t want to go. He was perfectly happy at home. I took him the first day. The boy who lived next door was in his class, so that helped. Every morning for a month I had to wait with him at the bus stop. He finally said, “You don’t have to come anymore.” He had gained some self confidence and a sense of security.

Then in May of 1973, the orders came. Dale was being assigned to Sonderstrom, Greenland, for a year and the family could not go. Ricky’s Daddy would be gone. Ricky showed signs of insecurity again as we talked about this move, a different house, and a new school for his first grade.

Rhonda would be going back to Culver-Stockton College in Canton, Missouri, but Dan would be home. Thank goodness! Ricky loved Dan, and maybe Dan could get him over the rough places. We found a house to rent in Belton, not far from Richards-Gebaur. Dan and Diane could stay in the same schools, which was nice.

We took a vacation to see all the relatives on the West Coast, then came back and put Dale on a plane for Greenland. That was hard to do, but I had the family to care for. I also had a teaching position to fill the hours and add challenge.
Diane, Dan, Ricky, Rhonda, Joyce, Dale
In front of base housing at Richards-Gebaur AFB, MO




Chapter 4 to follow

Chapter 2: Family Court

From Take Care of My Child…for a While by Joyce Sawyer

At first, our food and milk were too rich for him. I had also cut down on his rice too quickly. After a while we got all that remedied.

The women of the Chapel gave us a shower and we received several much needed items. We had given our other baby things away many years before.

After Ricky had been in our home for a month, the case worker came to see how we all were adjusting. Everything was going fine. After six months, she notified us that a date was set for us to appear in Family Court with Ricky. The date was in December. The judge would then make the final decision about the adoption.

Usually, at this time, the natural mother may also come. If she can show she is now able to provide for her child, she may ask to be awarded him. The judge often rules in favor of the natural mother. Since Ricky’s mother had signed a release, we did not think she would show up.

I dressed Ricky carefully and we drove to Tokyo. As we waited for our turn before the judge, I watched every young woman who came by, and I held my breath as she walked past us, hoping that Ricky’s mother had not decided to change her mind at the last minute.

Finally, it was our turn. I wet a hanky from the drinking fountain and quickly wiped around Ricky’s mouth. I wanted to get the last traces of juice off, so he would make a good impression.

We sat before the judge, with our case worker explaining that we wished to adopt Ricky and take him out of the country when our assignment was completed in Japan. The judge asked Dale if he would provide for Ricky, care for him, and see that he was properly educated. Dale answered that he would.

Somewhere along the way, Ricky had found two rubber bands. All the time the judge was talking, he was playing with these. Then he let one fly across the room and went scampering after it before we could grab him. That rather broke the solemnity of the occasion.

We were pronounced the new parents of Richard Toshio Sawyer. It was a happy time and a relief. Ricky was really ours.

Chapter 3 to follow