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Patient Story |
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In Memory Of Chantal Lace Johnson Bainbridge, IN United States female Lived with AML for 1 year, 9 months My daughter, Chantal, was an athletic 18 year old. On the high school varsity cheer squad, swim team, track team, dance team, and had been in gymnastics since she was 4 years old. She was active in many school clubs and had just made the Jaguar cheer squad at IUPUI, Indiana University Purdue University Indianapolis. Two days before the last day of her senior year of high school she was diagnosed with Acute Myeloid Leukemia. The date was May 22, 2006. She immediately was hospitalized at Riley's Hospital for Children in Indianapolis, Indiana. After two rounds of back-to-back induction chemotherapy, we were told her leukemia was refractory and that regular chemo would not work for her and her chance of survival was 5%. Our only option for her was to have a bone marrow/stem cell transplant. Since none of her immediate family was a match, Riley found an unrelated donor that was a nine out of a ten match. Chantal under went four days of total body radiation, three times a day, and a round of Cytoxan to prepare her for the transplant. Her stem cell transplant was October 16, 2006. Chantal's leukemia was in remission; however, Chantal had a multitude of complication due to the transplant. A few of her many complications were severe lung bleeding, Stage 4 graft-verses host disease, permanent kidney damage (her kidneys were functioning at about 25%), diabetes (from the steroids to prevent transplant rejection Chantal gained over 100 pounds), severe edema, Cellulitis (infection in the underlying tissue of the skin, which then lead to bacterial infections in her blood), and on and on and on. Her skin was so fragile and the stretch marks so severe that it would literally rip open, so she had open sores that took forever to heal. She had no immune system, was given blood transfusions, platelet transfusions, so many transfusions of so many drugs of whatever drug she needed at the time we lost count. Chantal was released from the hospital in January of 2007, home one weekend and was readmitted to the Riley the next week. Through the next several months the fore mentioned complications had her in ICU for weeks, on a ventilator and a dialysis machine. Chantal rallied through, got out of ICU, and back to the Stem Cell Unit, which we loving refer to as "5th Floor". She worked to gain her strength back and was released in May 2007. Even when Chantal was out of the hospital we still had out-patient clinic 3, 4 or 5 days, sometimes every day, a week to be transfused and given whatever drug she required at the time. But she was out of the hospital. Between May and September of 2007, Chantal was readmitted to Riley 3 or 4 times, Cellulitis usually the main culprit was given anti-bacterial drugs and always released and we returned to our out-patient status. Chantal also had a hole in her intestine. During this time she was using either a walker or a wheelchair, depending on what her strength was at the time and getting PUVA treatments (ultra-light therapy for her graft-verses host disease) and physical and occupational therapy. She went with me everywhere, we were always together, and she used to grade businesses for their handicap accessibility (just a fun past time but really an eye-opener when you are the ones who actually need the accessibility). Needless to say, being at Riley on the Oncology floor, we met several dear families whose child was afflicted with some type of cancer, we had grown close to many, and too many of them did not survive. The sadness is not describable; it just became a way of life, our life. But I had Chantal; she might not have been her former self on the outside but on the inside she was still Chantal. We would talk, watch movies, hang out; it didn't really matter, because she was still with me. The beginning of October 2007 we lost a very close friend who had relapsed with AML then a few days later after the funeral we were in out-patient clinic and Chantal's blood pressure was severally low. I forgot to mention, Chantal also had extremely high-blood pressure from the transplant, or that is the drugs she was on for the transplant. Once again she had Cellulitis. She was readmitted, given anti-bacterial drugs and once again the Cellulitis was gone. But this time she didn't come home, her bones had become weak from the long term steroid use and she had several compression fractures in her back that caused her a tremendous amount of pain. She under went two back surgeries to stabilize her spine called Kyphoplasty, where cement was inserted in the compressed areas. She then again had Cellulitis, was again given anti-bacterial drugs and was working on gaining her strength back in order for her to go home. The Saturday before Christmas, 2007 she was released but 911 had to respond to the house because she had fallen and was too weak to get up off the floor. She was readmitted to the hospital where she worked on her strength with the goal in mind of getting out and going home. Chantal always thought she would survive, she had plans of attending IUPUI, even cheering for the Jaguars, she had even been taking a correspondence course of Freshman English from the University of Indiana. Chantal’s birthday was Tuesday, February 5 and Child Life of Riley worked with Texas Roadhouse (Chantal’s favorite restaurant) to surprise her for her birthday and have food from the restaurant catered to the “5th Floor”. The weekend prior to her birthday was great, Chantal was getting stronger, her spirits were good (like always), she had cleaned her room, made lists of things she needed to do, worked on her homework, and was planning for the following weekend for her friends to come up to the hospital to celebrate her 20th birthday with her. Tuesday came and Chantal awoke to pain in her foot which quickly spread up her leg to her thigh, Cellulitis, once again. She had no idea about Texas Roadhouse coming and the surprise party we had planned. Because of the Cellulitis she had to go for a scan down in Radiology. While we were there, Child Life set up the surprise party and when we returned to the “5th Floor” it was waiting for her. Chantal was in so much pain but she put on a brave face, was very happy, and said, “Of course, when I don’t feel good, we’ll just have to do it again when the Cellulitis is gone”. She opened her presents but was hurting so bad had to return to her room. Unfortunately, Chantal didn’t feel up to Texas Roadhouse and only ate half a roll and some CoCo Puffs. The call came at 11:53pm that night, Chantal was not doing well, they were having trouble keeping her blood pressure up, and we needed to get to the hospital as soon as possible. When we arrived, they, the doctors had her blood pressure managed and she seemed stable. 8:00 o’clock that morning her blood pressure was falling again. Chantal was sent to ICU, put on a ventilator, and given drugs to help manage her blood pressure. The cultures take days to get back, but by the fourth or fifth day the culture were coming back that the bacterial infection, which had caused the Cellulitis, was getting under control. Then her kidneys failed completely and she was put on a CVVH, continuous dialysis machine, and her central line was coming back positive for an infection. She was given drugs to help with that infection and was stable. By the beginning of the third week in ICU things were stable and plans were being made to take her off the ventilator, and getting off the CVVH and being switched to a regular dialysis machine (which only runs for about 4 hours and can be done on the “5th Floor”). Sunday night, February 24, Chantal’s blood pressure, which had been doing better, started to fall again. She had another bacterial infection. She was given the anti-bacterial drugs but this time it wasn’t working. The infection she had had become resistant to the drugs. By Monday, the doctor’s were very concerned but were trying different drugs and we always, I always, thought she would pull through. The drugs will work like all the times before. This was not to be. Chantal’s heart started to have complications. Then it seems like in no time at all, the doctor’s were saying there wasn’t anymore they could do for her and she would never come off the ventilator and choices had to be made. The machines could keep her breathing for awhile but the end result would be the same, death. Chantal passed away from the complications from her stem cell transplant February 27, 2008, at 1:10 pm in the afternoon at Riley’s Hospital for Children, 22 days after her 20th birthday. Through all of her struggles, pain, and many complications Chantal believed she would make it through. Maybe that’s why she survived as long as she did. A positive attitude, good spirit, full of joy, and smiling face is what I remember about my daughter. When facing what she faced in the manner in which she faced it makes her a brave soul. No one should have to go through what she went through. No child, no family, should have to suffer like this. My daughter, Chantal, will be with me forever, in my heart and mind, she is everywhere. Chantal gives me strength to go on each day. |
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