Not long ago, I was reading a free weekly newspaper at Swami’s Cafe in Encinitas, California, when a photo jumped off the page and into my heart. The photo, which is at once both beautiful and heartbreaking, showed Michiko Lindsey cradling her cancer-stricken child, Kimiko. The accompanying story told of Kimiko’s battle with cancer and of Michiko’s battle to stay sane and strong in the midst of her fear and grief. Deeply touched by what I read, I contacted Michiko and asked her to tell me her story from the beginning. So here, in Michiko’s own words, interspersed with actual journal entries from her CaringBridge journal, is her love letter to her precious daughter.
KIMIKO ANNA LINDSEY-SCHRODER: PROFILE IN COURAGE
I named my daughter Kimiko because in Japanese, “ki” means precious, “mi” means beautiful, and “ko” means child. She may be only one-quarter Japanese but she is a full-blooded precious, beautiful child. I’ve loved her ever since I first dreamed of her when I was fifteen years old, twenty-five years before she was born.
Kimi’s nurse practitioner had pronounced her perfectly healthy at her annual physical on July 29, 2010, a week after her fourth birthday. Six weeks later, on September 10, her daycare provider called me to say that Kimi was crying because her back hurt. I picked her up and took her to Urgent Care, where I was told that she probably had caught a flu bug. Since we were leaving for Japan later that month, I made an appointment with her pediatrician for September 17, just to make sure. On the 15th, I was thrilled when Kimi called from her dad’s to say that her back pain was gone. But later that day, after going to the movies with her Aunt Dee and Uncle Chris, her leg hurt so much that she couldn’t walk. When Chris called me, I said, “I’ll meet you at Urgent Care.”
Thank God that Chris had e-mailed me the night before. After doing some online research and talking to a doctor friend of his, he had recommended that I ask her pediatrician for a CBC (complete blood count) and MRI. He may have saved Kimi’s life because if I hadn’t asked for those tests, the Urgent Care doctor wouldn’t have referred me to the ER, and the ER doctor wouldn’t have otherwise ordered them. When Kimi’s blood work came back with unusual markers, a call was placed to an anesthesiologist to sedate her for an MRI. That’s when the fear started rising in my throat; if someone was being called to the hospital to do an MRI at midnight, I knew something was seriously wrong. Sure enough, a couple hours later, the doctor said, “The MRI shows a large mass in your daughter’s abdomen. We’re going to admit her and she’ll be seeing a hematologist/oncologist in the morning.” He told me not to panic. But I knew. It was after 4 AM by the time Kimi was admitted to Rady Children’s Hospital in San Diego. I was too scared and too wired to sleep.
The next morning, the oncologist came to Kimi’s room and asked Peter, my ex-husband, and I to follow him to the chapel. On the way there, I had to remind myself to breathe. As soon as we were seated, he told us that the shape and location of Kimi’s tumor indicated that it was neuroblastoma, a diagnosis that was confirmed five days later. The doctor said that Kimi’s cancer probably started just a few weeks earlier. Three weeks is all it took to become a softball-size tumor around her left kidney. He said the tumor was inoperable and that the cancer was stage IV—the worst stage—meaning that it had spread to her blood, bones, bone marrow, and soft tissue. The only chance Kimi had was an aggressive eighteen-month regimen that included six rounds of chemotherapy, one or two stem cell transplants, radiation, and antibody therapy.
Through my tears, I asked, “Is Kimi going to die?” He said, “Well, everyone is going to die.” I said, “Yes, but is she going to die from this cancer?” He said, “Yes, that is a possibility.” I said, “How big of a possibility?” Predictably, he replied, “We don’t like to give numbers.” I said, “I understand that but you’re not helping me here. You need to tell me what to expect.” He said, “Well, of all the children who have this, 20 to 35 percent survive.” I said, “Okay.” (I was determined not to say “thank you.”) Much later, I found out that 20 to 35 percent of the children who have this cancer survive for five more years. Period. And that’s all they know.
The hardest thing to do after getting this devastating news was sitting with Kimi and pretending nothing was wrong while Peter went to tell the rest of the family. Remember in Indiana Jones and the Temple of Doom where the evil high priest plunges his hand into a living person’s body and pulls out their still-beating heart? That’s how it feels when you’re told that your kid has cancer.
I did my best to tell Kimi about her cancer honestly and matter-of-factly, but also downplayed it, like I was talking about a toothache. Even so, given the fact that she was in a hospital and all her family was there looking worried, she figured out that it was serious business. One night during her first week there, she woke up to go to the bathroom. When she got back in bed with me, she said, “Mommy, when I die, and you look in the sky, the first star you see is going to be me saying hi.” You know what I wanted to do, right? I wanted to fall on the floor sobbing. Instead, I gathered up my strength, laughed and said, ‘You’re so silly, Kimi. I’m going to die first. And when you see me in the sky, it will be me saying hi to you!” It took everything in me to act like my heart wasn’t breaking.
Today was a really tough day for me and Peter. While Kimi is tolerating the chemo wonderfully and most likely will be coming home on Wednesday, we learned how different life is going to be for us until Kimi gets better. The worst part was finding out that we will have to give Kimi 10 shots (one per day) after each round of chemo. We practiced giving the shots on a little plastic ball, but I think it’s going to be very different giving them to my little girl who definitely does not like needles.
CaringBridge journal, 9/27/10
Having a child with cancer brought laser-like focus to my life. The only thing I cared about—the only thing I wanted to think about—was loving Kimi and helping her get well. I never thought there would be a bright side to going on disability for bipolar disorder, but at least now I can spend every possible moment with her. I’m determined to control my own illness so I can be a source of strength for Kimi. I choose not to dwell on how hugely stressful all of this is because if I did, I would shut down. All I focus on every day is, “I have another day with my little girl. Thank you, God. If you only let me have her for five years, thank you. I wish it could be more but I’ll take what you give me.”
There are days I feel myself teetering on the brink of sanity, but thank God I have help; Peter is a loving father and we share custody. Still, I want Kimi all the time, and that’s part of my struggle. When you’re told that your child’s life could be compressed into days instead of years, every day you can’t spend with her is a day you’ll never get back.
I really am just trying to hold it together. Life has not stopped because Kimi has cancer. I also need time to re-energize because I don’t want to be in Kimi’s presence unless I can radiate positivity about her recovery. Yesterday was a bad day and I had to keep leaving the room to cry. The mom of another cancer patient advised me to NEVER cry in front of them because it scares them.
CaringBridge journal, 9/29/10
At first, it tore me up to know that Kimi would be forced to spend so much time in the hospital over the coming months. But to my surprise, she actually enjoys her hospital stays. One day, we were in the car and I said something about being angry. She asked me why, and I told her I was angry that she had cancer. She said she wasn’t angry that she had cancer. I asked her if she was angry that she had to stay in the hospital, and she said she liked being in the hospital. When I asked her why, she said it was because she didn’t have to clean her room and because we got to spend so much time together.
Once I thought about it, it made perfect sense. When we’re in the hospital, every moment is focused on her. What kid would not love having her parents’ 100 percent undivided attention? I bet to her it was a dream come true for her when she got cancer. You mean I get presents from everyone? I get to watch movies all day long? Should I let her watch so much TV? Well, I pretty much have to; there’s only so much I can do when she can’t get out of bed.
I think Kimi may be a little bit of a drama queen when it comes to the shots. I always ask her how the pain of a procedure was on a scale of 0 to 10 with 0 being no pain and 10 feeling like your arm was cut off. She ALWAYS says 10. Sometimes she will say 18. The nurse asked her how the pain was on a scale of 10 to 20, and Kimi said 20. So it’s a little difficult to gauge what her actual pain level is. We put on a numbing cream about an hour or so before the injection so it shouldn’t hurt too badly, but apparently the medication being injected burns and that’s what children find painful.
CaringBridge journal, 10/01/10
When your kid has cancer, you want to do anything you can to make them happy. You want to go to Legoland every week? No problem. You want to go to Disneyland and meet all the fairies and princesses and not wait in any lines? You got it. Now, if she wanted a Maserati or a pack of cigarettes, I would say no. But anything I can give her that’s not going to hurt her? Of course, Kimi. The same holds true at home. if there’s a choice between having fun and washing the dishes or making the bed, we have fun. Always. Is my house a little messy? It is. But you know what? She doesn’t care. If it’s a choice between a clean house and a happy kid, it’s no contest.
At the same time, I have to be careful not to spoil her so much that she becomes a brat. Granting her wishes is one thing; letting her get away with bad behavior is something else entirely. You need to balance out the presents and trips with discipline. And you know what? That makes her happy. When I scold her and make her take time-outs, she knows she’s not going to die. She knows that cancer isn’t any big deal because Mommy isn’t treating her like she’s special.
We have really been struggling to convince Kimi to take the various oral medications she needs that don’t taste that great. The first few times she sobbed and told us she’s not sick anymore. I told her she has two choices: she can take the medicine herself or we’ll have to get the nurses to hold her down and make her take the medicine. And that is the truth. So she would finally take the medicine when I would act like I was leaving to go and get the nurses. Then today I handed her the cup of medicine and she just drank it right down. Peter and I were amazed. She said that she had gotten used to it and I could tell that she was happy that she had made us so happy. It is so hard to be the mean mommy and force her to do things that I know are best for her. But I suppose that we do that as parents all the time. The worst was when I had to help hold her down when she was getting her shot and she begged Peter (who wasn’t holding her down), “Help me, Daddy!” Yeah, I guess I’m the bad cop.
CaringBridge journal, 10/05/10
When Kimi looks at me and says, “You are the best mommy in the whole wide world,” I am so happy. But five minutes later when I tell her she can’t have ice cream for breakfast, she says, “You are the worst mommy in the whole wide world!” When I hear that, I know I’m doing my job. There’s nothing she can say that will hurt my feelings. In fact, my dream is to have a fifteen-year-old Kimi tell me she hates me. I want her to scream and say, “I hate you, Mom, and I wish I was never born!” And I’m going to laugh and say, “Yay, it’s been ten years and you’re still alive!”
Thank you God for another day with my precious daughter. Thank you for helping all of us to be brave and strong. Thank you for giving me such wonderful friends and family. Help me to understand the lessons we are to learn from what we are going through. Please help me to be the best mother I can be. Please watch over us and protect and heal my baby.
CaringBridge journal, 10/07/10
My daughter said to the nurse when her hair started falling out, “Nursie, my hair started falling out tonight in the bathtub. I am so excited.” The nurse looked at Kimi, looked at me, and said, “Really? How come?” And Kimi said, “Because Mommy and me are going to shave our heads and have a wig party and it’s going to be so fun. And then Mommy is taking me to the beauty parlor and they’re going to paint our heads with flowers and we are going to be nice zombies for Halloween.” Tell me I’m not a good mom. With a creative imagination and the grace of God, I’ve been able to reframe things in a more positive light. I called my therapist and said, “Mary, am I doing something bad if I have got my kid looking forward to losing her hair?” And she said, “Michiko, it is a testament to how well you can spin a story to your kid.”
Friday morning there was hair all over the pillow and sheets. I didn’t brush her hair but hair was falling out all over the place. I kept picking the hairs off her shoulder and would walk over to the garbage can at the clinic and cry. Another cancer mom was so sweet. She pulled me aside and asked if she could tell me something. She gave me a big hug and whispered in my ear that it was much better to just shave the hair off. She said she saw how upset I was and wanted to share this advice. I called my friend who has cut my hair for about 20 years, and she came over on her day off to cut Kimi’s hair. She made two braids of hair—one for me and one for Peter—and she brought me a lovely lavender mesh heart in which to save Kimi’s hair.
CaringBridge journal, 10/11/10
I took Kimi to Patti’s Pearls in Carlsbad to get our wigs. Ms. Patti is like a fairy godmother and Kimi loves her. She followed Ms. Patti into the kitchen where she was working on our wigs, and I heard them talking about having cancer. Ms. Patti survived her treatment for colon cancer eight years ago, but the cancer has just returned to her eye area. She is an angel and donates wigs to children with cancer. Ms. Patti shaved both our heads and we had a fun, wonderful wig party. Kimi had the time of her life. All my girlfriends put on wigs and we picked one out for Kimi that looked just like her hair. And you know what? Kimi won’t wear it. She said, “I don’t have brown hair, Mommy. My hair is blonde.” Her hair is not blonde. But you know what I’m going to do? I’m going back to the wig lady, give her the brown wig back and let Kimi pick out whatever wig she wants. I didn’t let her do it the first time because I thought I knew better. Well, I didn’t.
Wonderful, wonderful news from our oncologist, Dr. Roberts. After two rounds of chemo, Kimi’s tumor has shrunk by 60 pecent. It was originally the size of a softball and is now the size of a small apple. There was not much change in the MIBG imagine scan which shows cancer cell locations but he said that that is not so much of a concern at this point. We also do not yet have the results of the bone marrow aspiration and biopsy. Dr. Roberts said those results are not nearly as meaningful as the major reduction in the size of her tumor. This news improves Kimi’s prognosis. If the tumor had not responded to the chemo by increasing or spreading, her prognosis would be worse. So Kimi and I are very, very happy.
CaringBridge journal, 11/09/10
Kimi’s chemotherapy treatments are toxic. She’s already lost her hearing and will need a hearing aid. She has a very high chance of developing a second form of cancer like leukemia. She will be sterile and have permanent heart, kidney, and liver damage. She also may have cognitive problems like prioritizing tasks. It’s all bad. There’s no good news. And yet, I believe that God is holding me and Kimi in the palm of His hand. No, I don’t believe it, I know it. However this turns out is not up to us, it’s up to God. But I know He knows what He’s doing, so I trust Him.
We managed to have a lovely afternoon outdoors at the beach (less germs outdoors). We walked around Ocean Beach and explored the tide pools when the tide went out. Looking in the tide pools made me think of a metaphor to life. The tide goes out each day and leaves behind a little microcosm of life containing plants, hermit crabs, and even little fish. Then the tide comes in and the tide pool rejoins the rest of the ocean. That’s kind of how I feel right now. Like I am isolated in a little pool of pain and sickness. Kimi’s cancer permeates every day and everything for us. We have to go to the hospital clinic every day for labs or for an injection to stimulate the growth of her blood cells. When Kimi’s immunity is compromised, we live in our little tide pool hiding away from the germs. And so we sit and we pray and we wait for the tide to come in.
CaringBridge journal, 12/08/10
After three months, Kimi still thought that being in the hospital was the coolest thing ever and couldn’t wait to go back each time. In January, we tried three or four times to get her in for her fifth round of chemo but her blood counts weren’t high enough. Each time when the nurse smiled and said, “You get to go home, Kimi,” she started sobbing. My crazy kid. When she found out she was finally going to be admitted, she cheered.
When the nurses come in to administer the chemo, they each wear a white paper smock, gloves, and a mask. It is hard to watch knowing that these toxic drugs are flowing into the veins and body of my tiny little girl (she would correct me here . . . “I am a BIG girl, Mommy!”). It is hard when she has her dressing change every Monday. I know that it really hurts her. The “dressing change” is when the clear plastic sticker-like bandage that covers the site where her apheresis catheter enters her chest is removed. We all have to wear masks during the procedure in order to keep as many germs away as possible. Often, when the sticker is peeled away, her red, raw skin oozes blood. And then (and this is the most awful part) they have to soak the area with an alcohol-type cleaner. If you have ever used hand sanitizer when there’s a small cut on your hand, you know that this stings. I tell Kimi to squeeze my hands when it hurts. Her entire body goes rigid, and she shakes with the pain. She screams and cries and begs us to stop. I desperately try to distract her—asking her questions, telling her things. She screams that she can’t think!
CaringBridge journal, 1/09/11
After Kimi finished her fifth round of chemo, her tumor had shrunk to the size of a large grape and was now highly operable. Her imaging scans showed a lot of improvement. Her knees were clear and there was less cancer in her hips and arms. The surgeon was optimistic that he would not need to take out Kimi’s kidney or spleen.
Kimi’s surgery had been scheduled for February 7 in San Diego, but after discovering that Dr. Michael La Quaglia, the top neuroblastoma surgeon in the world, was at the Sloan-Kettering Cancer Center in New York, we rescheduled her surgery there for February 24 and flew out there courtesy of Miracle Flights for Kids. What a wonderful organization! Due to a respiratory infection, Kimi’s surgery was pushed back to March 14.
Tonight, in the stillness of our hospital room, I held my precious little girl sleeping peacefully in my arms and anointed her small bald head with my tears, begging God silently and desperately over and over, “Please don’t take my baby!” The pain was suddenly completely gone, and I was instead filled with the most intense feeling of gratitude for the gift of my child. No matter what comes, I was so incredibly thankful for the chance to create this life. I was filled with the blessing of Kimi’s awesome courage and acceptance of her illness and treatment. Her positivity. Her energy. Her sense of humor. Her loving nature and empathy. Her intelligence and wit. Her focus and brilliance. Her radiance. Her smile. Her hugs and kisses. I received God’s gift of the perfect little girl that I dreamed of all my life. And now she isn’t perfect physically anymore. But I know that Kimi’s spirit will always be perfect. God will never change that and no one can ever take that away from me. That is my gift. Thank you, God.
CaringBridge journal, 1/09/11
I felt my heart breaking when Kimi asked me, “Mommy, now that the tumor is coming out, do I have to get that sixth round of chemo?” I said, “Yes, I’m so sorry, honey. I know it’s hard and it makes you sick.” She said, “I like throwing up, Mommy.” Uncle Chris and I were laying on the bed. We looked at each other and I said, ‘What?” And she said, “I like throwing up. It’s fun.” I looked at Chris and started crying because my daughter had just taken one of my biggest fears about the last round of chemo and completely demolished it.
The day before her surgery, Kimi said to me, “Mommy, I have decided that I do not need the surgery tomorrow.” I said, ‘Well, that’s interesting, my love, because we have got to get the cancerous tumor out of your body.” And she said, ‘No, I decided that I like having this tumor, and I’m adopting him. He will be my pet tumor and I’m going to name him Jack. Yes, his name is Jack Black the Rat. So we don’t need to have the surgery tomorrow.” I said, “Kimi, that is so sweet of you to adopt your tumor like that, but I’ve got some bad news. You know all that chemo you’ve been having? That has made your body a very bad place for Jack to live. And we have to get him out of there. So we’re going to go get him out, and then the doctor’s going to take a picture of him for you, and then they’re going to give him a special new home in a pathology laboratory.”
Kimi was very scared about the surgery and had a tough time falling asleep last night. We spent a long time looking at all our pictures and talking. It was a special night, and I think it was the right way to prepare her for this difficult day. She was very anxious when the anesthesiologist came in to give her a sedative and tried to hide under the blanket. She held my hand very tightly as the sedative was administered, but relaxed almost immediately and was very calm when she went to sleep. I told her that she can tell people that she got her surgical scar in a sword fight. She is hilarious when she tells people, “I got this scar in a sword fight when I was a pirate girl . . . Aye, maties!” She loves the thought of her scar now . . . so glad we gave it a good spin.
CaringBridge journal, 3/14/11
The surgery could not have gone any better. The tumor is gone along with a mass of cancerous lymph nodes. Only the tumorous adrenal gland (aka Jack Black the Rat) was removed and all of her other organs remain. Still, there’s a long and dangerous road ahead. But today is a good day because my daughter is alive.
In my weaker moments, I have tried to imagine what it must be like to bury my daughter. I’ve read the CaringBridge journals of mothers who wrote about that. One mother wrote, “I used to imagine it. You know what? Whatever you can imagine, It’s a million times worse.” So I’ve got that to look forward to. But I decided that torturing myself about it is crazy. Is it going to be less painful when it happens because I’ve practiced feeling sad? No. Is it going to do me any good to imagine her in a little coffin? No. Why even put those pictures out there? You know what I picture? Kimi in her high school cap and gown. Kimi in her wedding dress. Kimi handing me my first grandchild. I will hold these empowering visions in my mind to keep me strong. If I don’t focus on those things, I’ll go crazy and my heart will break in two. And tears are something that I just can’t afford. Not now. Not while I can still take Kimi in my arms, kiss her cheeks and tell her I love her. I won’t cry. I can’t cry. Crying would just be wasting time.
CaringBridge is a charitable 501(c)(3) nonprofit organization that offers free personalized websites to people who are facing a serious medical condition or hospitalization. The CaringBridge site functions like a blog, allowing a patient’s family member or friend to post updates on the patient’s condition, enabling family and friends to stay updated while freeing the family from the burden of making and receiving numerous phone calls. Family and friends can also leave messages in a guestbook.
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