May 25, 2011 was one of the worst days of our lives. Our four year-old daughter, Carmen had a fever and was lethargic that morning. Over the phone, her doctor’s office told me to keep giving her Tylenol and “come in the afternoon.” I knew there was something wrong, really wrong. I said to my husband Chris, “Am I stupid? What am I waiting for, I am going now!” I think I had already begun to go into shock. I started pacing around the house packing up a Trader Joe’s shopping bag and one of our market baskets. I packed small books, her favorite toys, our toothbrushes, my phone charger, and several pairs of PJ’s for Carmen. I thought she might be dehydrated and need to stay the night for fluids.
We were living on the island of Kauai and were medi-evacuated to Oahu late that afternoon for Carmen to receive life-saving care. Carmen was admitted to Kapiolani Women’s and Children’s hospital Pediatric ICU and immediately given a pint of blood. Her hemoglobin had dropped so low they told me she was near cardiac arrest. It was a day and night I hope no parent ever has to experience.
The next morning, my husband left our two year-old son, Trevor, with friends on Kauai and met up with us at the hospital. The doctors gave Carmen platelets and then preformed a bone marrow biopsy to “rule out Leukemia.” Well, a few hours later we were told our precious little four-year old girl had ALL Leukemia. It felt like a kick in the head for me— and it brought my husband and I to our knees.
This situation literally tore our family apart. My wonderful mother and father-in-law immediately got on a plane from Ontario, Canada to come to be with Trevor on Kauai. My husband came to Oahu May 30 to stay with Carmen and me for the entire month while Carmen battled Leukemia. We could not risk having Trevor with us with Carmen’s immune system so compromised. It was heartbreaking to be without him.
Carmen spent 11 days in the hospital, fighting a strep infection in her blood that happened because the Leukemia made her body so weak she couldn’t fight it off herself. After she won that fight, Carmen started chemotherapy. When she was discharged from the hospital, the doctors told us she had basically no immune system and was extremely susceptible to illness. Staying in Waikiki, Oahu was a bit terrifying to us, but our fears were soon turned around with the wonderful experience we had at the beautiful Royal Hawaiian Hotel. It is a legendary hotel and became our refuge in such a difficult time in our lives. We drove back and forth to the hospital and hotel for 31 days, while Carmen received her chemotherapy treatments. All the while, our two-year old son was on another island with his grandparents.
Our friends Alvin and Wendy Wong came and picked us up from Kapiolani Hospital and brought us to the Royal Hawaiian. When we drove up Carmen asked, “Did they paint the hotel pink for me?” The answer was and always will be, “YES.”
Alvin and Wendy Wong (Alvin was a colleague of Chris’) were angels to our family. They came to the hospital almost every day when they heard the news about Carmen. The first time, Alvin came to visit, he had two bags of organic groceries from the health food store in his hands. I had never even met him. I sobbed in his arms. This was the beginning of the beautiful outpouring of help and generosity from friends and strangers. The Wong’s also lent us one of their family cars during the month we were there.
We lived at the Royal Hawaiian for nearly four weeks thanks to Starwood and the incredible generosity of friends and family who donated funds for Carmen so we could remain together.
We never anticipated the love and feeling of ohana (ohana means family in Hawaiian), which came from so many of the wonderful staff at the Royal Hawaiian. George, Gerard and the folks at the front door were always there to help me install Carmen’s car seat in a cab and always made us feel so welcome.
Fredalina was the fifth floor housekeeper. She always made sure we had plenty of water and fresh linens. As the packages for Carmen came to the hotel, we suddenly had a crowded room but Fredalina was always happy to see Carmen.
Carmen was on a steroid for the first 35 days of her treatment. It gave her a ravenous appetite to say the least. My job was to satisfy her hunger around the clock. This is difficult to do in Waikiki when you want to feed your child organic and healthy food. We did the best we could do. Carmen would go on kicks of what she was craving. Every few days it changed to something different.
Carmen would begin asking me around 5am, “when are we going to have breakfast?’ This is after a night where she would be wide-awake at 10pm, 12am, 2am, and 4am as well to eat. We ate breakfast in the Surf Lanai every morning and Maria and Eriko were always so welcoming to Carmen. They would quickly bring us to the back of the restaurant where we could be away from others to protect Carmen. They would seat us on the bench seating with comfortable pillows.
George, who was always our server, would bring a blanket for Carmen because she was often cold. He would usually have tea on the table for me and hard-boiled eggs and bacon for Carmen. Bacon was one of Carmen’s strongest cravings during that time– she will not touch it now!
The kitchen would make her pasta marinara if that is what she wanted at 8am. They would even prepare a box of Annie’s pasta, which I would bring at her request. George treated Carmen like his own grand daughter and was the epitome of service. He did everything he could to make things more comfortable and better for Carmen. He treated us like family.
After 11 days in the hospital, 31 days at the PAU Clinic, 20 flights to Oahu, 45 overnight stays away from home for treatment, five rounds of chemotherapy, 11 sedations with Intrathecal Chemotherapy in her cerebral spinal fluid, our sweet, brave Carmen remains in remission and is on daily chemotherapy pills and a monthly trip to the Pediatric Ambulatory Unit at Kapiolani Hospital until July 2013.
Chris and I have experienced so many miracles since May 2011 and continue to. The biggest one being how our love has grown for our children, family and each other. We have learned so much— and all the learning and love has been such a gift.
Everyday is so precious and EVERYDAY is a good day to show the people who mean the most to you how much you love them.
With Much Love and Aloha,
Heather is a mother, a wife, and a brilliant photographer (you can check out Heather’s lifestyle photography here) who currently lives with her family on the Big Island of Hawaii. I thank Heather for sharing Carmen’s brave story and photos. But more than anything Heather and Chris are showing their daughter how powerful love is.
Carmen is such a strong fighter, yet it isn’t easy. Currently, Hawaii is at risk of running out of Methotrexate, a drug that Carmen takes weekly to fight the leukemia. Children cannot fight cancer alone. We ask that you take a moment to read this and act with your heart on this.
When I hear what amazing things strangers can do for people they’ve never met, and how a hotel like the Royal Hawaiian can provide pink hospitality just for a princess as special as Carmen, it makes my heart smile with hope and joy. Carmen was a friend of Zoe’s on Kauai, and Zoe continues to pray for Carmen every night. The Team White family continue their fight with leukemia everyday. If you would like to follow-up on Carmen’s story visit Carmen Leolani White.
Speak your mind…
Does this sweet story touch your soul, the way it’s touched mine? I’d love to hear your thoughts about the power of love during hard times.