Kayleigh's Story, in her Mommy's Words.
January 26, 1999 at 1:10pm I gave birth to Kayleigh, my second child, and first daughter. Kayleigh was the first girl to be born in John's family for generations, and was, therefore, the 'Princess'. She was a very good baby, suffered with colic for a few weeks, but apart from that, nothing was ever wrong. She walked at 11mos, and once she started talking, there was no stopping her. Princess, however, was so far from the truth! This child could get herself dirty in a millisecond, and it just did not matter to her.
She was a playful and loving little girl, there was nobody that met her that did not fall in love with her, she had the biggest blue eyes that you have ever seen, and they always had a sparkle. From the day she was born I called her my angel girl, not realizing how close to the truth that was. There were days that nothing would go right, and Kayleigh would make you smile. She once 'saved' our dog by putting her hand down his throat to retrieve a chicken bone, she got the bone! The dog was not impressed. She jumped off our deck once and came in to tell me her toe was hurt, after putting a band aid on it; she went back outside to continue playing. Joshua came in and asked how her head was, apparently she had hit her head when she jumped; upon looking there was a gash about an inch long. With all that brown hair it was well hidden, and not bothering her in the least.
Kayleigh adored her big brother Josh and her baby sister Taylor, they were her life, she always wanted to do things with them. When Taylor was born, I was somewhat apprehensive with Kayleigh, seeing as she was only 19 months old, but my fears were unwarranted, as Kayleigh took to Taylor as if she was her own baby.
We moved from Florida to North Carolina in October of 2001. Kayleigh, Taylor, Cody (the dog) and I made the trip, while John and Josh rode in the truck. That trip was definitely the longest I had ever taken two toddlers to keep me busy for 18 hours. Kayleigh seemed to adapt to her new surroundings very easily, I don't think she really got the concept of how far from home we were, but she was happy.
We prepared for our first Christmas away from home by going to a Christmas Tree Farm, something that the children had never done, and going to the City Christmas festivities. Kayleigh got to sit on Santa's lap, or as she called him 'Santa Closet' that year, she was not impressed, but she got a candy cane, and that impressed her. Things were going along fine, getting the house ready, cookies baked, gifts bought, there did not seem to be a problem in the world that could get us down, until Kayleigh started to feel sick.
It was December 20, 2001, Joshua's birthday, things were going as planned, but Kayleigh was not herself, she was excited about the birthday celebrations, but not excited enough. She stood by her brother as he blew out his candles and smiled and laughed, singing Happy Birthday. When it was time for cake, she declined, that was unusual, as Kayleigh rarely declined much of anything.
Over the next few days, she became extremely lethargic, with no appetite. I took her to the ER on the night on December 23, 2001 and was discharged with a stomach virus, apparently visible on the x-ray (later I found out that this was not possible). Christmas Eve John and I were wrapping presents in the early morning hours, when Kayleigh woke up, and the sight of Mommy and Daddy with all these presents did not even phase her, she went right back to sleep. We had to force her to open her presents on Christmas, but then once she got into the swing of it, it seemed as if we had our old Kayleigh back, and John and I thought that maybe the virus had run its course. The next day, however, things were just as they were, so we went to the pediatrician on December 27, 2001, where it was discovered that Kayleigh's entire head (sinuses, ears and throat) were all infected, so a round of antibiotics were started, she was also running a low fever.
By New Years Eve the infection was not getting any better. That night I sat on the couch with her head in my lap, as I was running my hands through her head, I noticed a few small lumps on her scalp. As the night went on, more and more lumps kept coming up. I remember telling John, and his comment was 'What do you think it is?' I told him I had no clue, and he replied with 'It could not be cancer right?' 'Of course not' I said, how little I knew.
January 2, 2002, we were supposed to get our first snow, the first snow that the kids would see, as well as myself. I took Kayleigh back to the pediatrician that afternoon. I will never forget the look in her Doctor’s face; she sent us to the hospital for blood work. When we were walking back to the pediatrician’s office, the snow started falling, Kayleigh was so happy to see and feel the snow. Little did I know, my life as I knew it would be changed in less than an hour.
The doctor came in the room and told us that Kayleigh's blood work was irregular, and she had faxed the blood work to Duke for them to look at. She looked me straight in the face and said ‘She might have leukemia’ I remember sitting there, with my baby on my lap, as if I was in a fog, looking at the snow falling, and thinking, ’it’s not leukemia, it’s got to be something else‘.
I was then being told that we were going to be taken to Duke that night in the snow, I remember asking if we could wait until tomorrow, as it was getting late, and being told, no, we had to go NOW! I called John, and he started getting the other kids ready. In retrospect, I know we were not thinking clearly, what parent could at a time like this. How could he bring the other two children to Duke in this weather? Where would they stay? We went back to the local ER and waited for our Life Flight Ambulance to take us to Duke. Due to the severe weather conditions, John stayed with Josh and Taylor at home, while Kayleigh and I took a four-hour ride in the middle of a very cold and quiet night. I will never look at snow the same way again.
I'll never forget, holding her so tightly as we both got wheeled down to radiology for a CT scan of her brain. My precious little girl clung so tightly to me, now knowing what was going on, why she was here, and where her daddy and brother and sister were. That memory stands out in my memory as one of the first during our battle with cancer. The initial bone marrow aspiration in the PICU, she was so scared, not understanding why her mommy could not stay with her. Cancer, your daughter has cancer, in a million years I never thought I would hear those words. I remember sitting writing down the type of leukemia that Kayleigh had been diagnosed with, getting on the phone as soon as the doctors left to tell John and have him research it online, not expecting him to say that she had the worse kind of leukemia. Our world crumbled.
The days following her initial diagnosis were a blur, doctors in, doctors out, repeating the same information over and over again. Tests upon tests, trips to the operating room and radiology. The fog started clearing after about a week, and we got into a routine. Then wham, we were hit with another blow, Kayleigh was being moved to the PICU, she had fluid around her heart and was in danger of being placed on a ventilator. How could this happen? A month earlier she was a happy healthy little girl, running, laughing and getting ready for Christmas. There was the threat of being put on dialysis as her kidneys were not working, but she had other plans. We spent three weeks in PICU, and during that time Kayleigh started to come out of her shell. She developed close relationships with her nurses and doctors. Wanting to leave and go to Burger King and McDonalds, wanting to push her bed to Disney World, and asking if she could go fishing in the fish tank. There are so many good memories from her time in the PICU, as strange as that may sound, that it would take a book to share them all.
Finally, we were released from the PICU, and Kayleigh really started to come around. She was making friends with everybody at the hospital. I'll never forget the day she had a play date with the Child Life Specialist, and when I was coming up the hallway, one of her nurses stopped me and pointed to her room. There was Kayleigh sitting on the floor playing with Play Doh, I was so happy, I had tears in my eyes. Her first time riding the bike for Physical Therapy, she was so very happy, smiling and doing her best to push those pedals, once again, I was teary eyed. Everybody got to know Kayleigh, from the auxillary staff to complete strangers. They knew who that little girl on the bike with the yellow gown was. As her strength started coming back, we would be out of her room more often. One day she wanted to go back to the PICU to see her friends, so we sat outside as she called "Julieeeeeeeeeeeeeee, Julie, Julie, Julie" until someone went in and got Julie for her.
We got the news in March that Kayleigh was in remission! You could not find two happier parents in the world. We were now sure our baby would be fine. Kayleigh came home before and during her maintenance chemo treatments. She cried to leave the hospital, she wanted to stay. We stopped on the way home and got her Burger King, and went to the mall. That's what she wanted to do. Our days at home with her were absolutely wonderful. Josh and Taylor had their sister, and Kayleigh had her brother and sister. We went shopping, on an Easter Egg hunt, and just loved her to pieces, inhaling every moment with her. Grandma and Grandpa came up from Florida for Easter to spend time with her. I'll never forget the day Kayleigh and I went upstairs to take a nap, then Josh came and joined us. When I woke up they were both sleeping, quietly, I went down stairs. Not long after I peeked upstairs and they were both sitting on my bed playing. That moment is etched in my memory forever.
After Easter we went back to the hospital to finish chemo, or so we thought. While we were waiting for Kayleigh's immune system to come back, she started experiencing headaches, and her blood pressure was extremely high. Initially that did not stop her. She wanted to show everybody she could walk again, she called for nurses to come and unhook her lines, or in her words "hook me up", so she could walk up and down the hallway. She made play doh cakes and cookies for everybody, and you had to eat them. She knew how to flush her lines, so she would help with that. She was so full of life and energy, little did we know, the cancer we thought was gone, was slowly killing her. Kayleigh's bone marrow and bloodwork all showed that she was still in remission, but the leukemia was there, laying in her brain.
It's as if she was fine one day, and the next we were rushing her to the PICU again, her blood pressure was so high that the nurse did not want me to see it. I'll never forget the day we literally bulldozed people in the hallway, a nurse on the bed with her, pumping her lines with drugs, doctors and other nurses charging and pushing and pulling her bed to get her to the PICU. This was the beginning of the end.
Kayleigh went in for surgery to remove the blood clot, when it was discovered, that there was a chloroma (a leukemia tumor). The only way to get rid of this was through radiation, but first we had to get through the surgery. The surgery left Kayleigh in critical condition, we did not know if she would make it through, but she did. Radiation treatment was started shortly after and we were moved back to the floor to recover from the initial radiation. She started to show signs of improvement, her vision was coming back, she was talking a little, and she was smiling. Then, wham it was as if I was living a nightmare that I could not wake up from. The same symptoms started again. I knew Kayleigh was going back into PICU. Her doctor came in and told us that something was crushing the shunts that were placed to reroute the fluid in her brain, and if radiation did not work to get rid of the tumors, there was nothing left for our sweet baby, I sat on her bed and pulled her up to me and held on to her and cried knowing our chances were not good.
A series of radiation treatments were started. We travelled by Rapid Transit daily to the Radiation department, we almost lost her on one trip, her vitals dropped, and here we were in another building with no crash kit. Her wonderful nurses got her through it and we went back to PICU. I know we did not make many trips to radiation, but looking back, it seems as if we were there for a month, where in reality, it was only a few days. Kayleigh seemed to be responding to the radiation, and on Saturday I went home for a day, and left John at the hospital. Upon my return on Sunday, I walked in to find the neurosurgeons placing another shunt in Kayleigh's head. This was about the third or fourth in 24 hours, the shunt was being crushed again.
Monday, we learned the news that the radiation was not working, and our baby was not going to make it, she was slipping away from us. We met with her doctors from all departments on Monday afternoon and were informed that she was not going to make it. Her blood pressure and heart rates were dropping to numbers so low that basically she was being kept alive. We made the decision to let her go, there was nothing left to do for her, and we felt that she was already gone, as she had stopped responding to us the night before and started to show signs of having seizures. John and I went into her room, surrounded by nurses, doctors, and other hospital staff and we held our baby, told her how much we loved her, and felt her slip away from us on Monday, May 6,2002 at 4:08pm.......
To read about Kayleigh's Fight with AML and her family today please click here.
 
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