What we've been waiting for since Monday morning is happening!! We are being discharged from the PICU and sent back downstairs to the AFLAC Cancer Center!!! We are SOOO excited and so happy! The doctors are so impressed her progress and the way she has taken to the treatment so far.
WBC - 9700
Platelets - 90,000
~Hope for Haylee~
December 2, 2011
11/25/11 - Day 5
When we got back, she slept for a little while then to our amazement, asked for our help to get in the chair! She actually wanted to get up!! I laid in her bed while she sat in her chair and we played TIC TAC TOE and Old Maid to pass time. We had a visit from the clowns and that made her laugh and perked up her spirits :) She had to be given another bag of platelets because they were below 50. The doctors were still saying she was doing good and we could be out of the PICU in a few days!!
WBC - 32,000; 22,000
Platelets - 49,000; 127,000
11/24/11 Happy Thanksgiving from Egleston :)
She had chemo last night so she wasn't in the greatest moods today. She just wanted to stay in the bed. We tried to get her to sit with us and she wouldn't. Adam climbed in the bed with her and watched a little TV. She kept having to have the "pink bucket" (in case of vomit) in front of her. She was nauseous all day, but with nothing on her stomach, she couldn't throw up. My mom cooked and brought Thanksgiving dinner for us to eat in the PICU waiting area. Mason was able to visit with us too! I was so glad because I've been missing that little dude!! The doctors have been very impressed with her progress but put her on nutrition IV bags - electrolytes and lipids - because she hasn't been eating or drinking. We called it her Thanksgiving dinner!!
WBC - 47,000; 40,000
Platelets - 71,000; 52,000
11/23/11 - She had a good day!
It was looking like she was going to stay grumpy and angry all day, but after a morphine induced rest, we convinced her to stay out of bed and sit in a chair next to the bed! She was hooked up to different machines and her lines where coming out everywhere but she made the best of it. She watched some TV, she laughed and joked with us, and enjoyed being up.
We began to talk to her about why she was in the hospital and what exactly her diagnosis meant including how the medicine could make her sick, hair loss, etc.. She understood and took it very well :) She had a CT scan done on Tuesday to see if she had any bleeding on the brain. They wanted an MRI on her but she wasn't responding well to the sedation (her oxygen level kept dropping). She also had platelets given since they dropped to 50. She was given her 2nd round of chemo during the night as well. WBC - 105,000; 91,000; 69,000
Platelets - 58,000; 51,000; 50,000; 95,000
(In the pictures you'll notice how her face looks swollen - it's from the IV fluids because she wouldn't eat or drink. At this point, she had nothing to eat or drink since Sunday night when she had a handful of goldfish and some Gatorade at the immediate care center.)
11/21/11 - Day One of Haylee's Battle
Late that morning, still in complete shock that my child has been diagnosed with APL Leukemia, I began to let my job and other people in my life in on my reality through text messages because I couldn't bear directly talking to anyone. I was a wreck just looking at Haylee, knowing that I couldn't help her. I went through so many emotions - anger, sadness, guilt, hopelessness - none of which I felt just 24 hours ago. We were told since she was considered High Risk APL, her chemo treatments would start that night.
She began a medicine called ATRA, which is the acid form of Vitamin A. She's never had to swallow pills before so I thought she would have a hard time with it. Surprisingly, she did wonderful!!! The part she didn't like about it was that she had to be woke up to take the pills twice a day - she was kept on morphine on and off for her stomach and head pain so she was sleeping a lot. She was given platelets overnight to bring them back up.
She had surgery to have her central line put in her chest so that they didn't have to keep poking her with needles every time they needed blood (which was every 12 hours) and to give medications. Bone marrow taken from her hip during the surgery and tested to be sure she 100% had APL (which she did). Around 9pm that night, she began her first chemo treatment - idarubicin. With help from the morphine, she slept through it.
WBC - 106,000 - 110,000
Platelets - 56,000 - 94,000
She began a medicine called ATRA, which is the acid form of Vitamin A. She's never had to swallow pills before so I thought she would have a hard time with it. Surprisingly, she did wonderful!!! The part she didn't like about it was that she had to be woke up to take the pills twice a day - she was kept on morphine on and off for her stomach and head pain so she was sleeping a lot. She was given platelets overnight to bring them back up.
She had surgery to have her central line put in her chest so that they didn't have to keep poking her with needles every time they needed blood (which was every 12 hours) and to give medications. Bone marrow taken from her hip during the surgery and tested to be sure she 100% had APL (which she did). Around 9pm that night, she began her first chemo treatment - idarubicin. With help from the morphine, she slept through it.
WBC - 106,000 - 110,000
Platelets - 56,000 - 94,000
December 1, 2011
The Worst Day Of My Life...
At 2pm, I went to the grocery store. By 4pm, Adam was calling me to come home because she needed to go to the urgent care center that evening because she hadn't hardly ate and was sitting in her room rocking on her bed crying that her stomach hurt as well as her gums had started bleeding and were black in some spots. I raced home, gathered Haylee, and off we went to Children's Healthcare Immediate Care on Satellite Blvd in Duluth. We waited for about 20 minutes. From the time we got out of the car until we were called she spiked a fever of 103. I began to cry because I was extremely worried about her. She was so sweet and said, "Mommy, don't cry. I'm fine." We began to walk back to a room and the nurse told me quietly that they were concerned about her symptoms and that I needed to be strong. The doctor on call ordered a CBC (complete blood count) and found that her WBC (white blood count) was 115,000 and her platelet count was 19,000 (normal WBC for a child is 5,000-10,000 and normal platelets are 160,000-500,000).
They took me into a room and told me they were in touch with a Hem/Oc doctor (hematology/oncology doctor), they were concerned she may have Leukemia, and were going to transport us by ambulance to Egleston Children's Hospital. I began to cry hysterically and realized at that point I was alone with my news and had no one to turn to for support at that time. I got myself under control and went back to the room to call Adam, who was at home with our 3 year old son, Mason. He rushed Mason to my parents and met us before we were transported.
Upon arriving at Egleston, Haylee was immediately put on IV fluids and more blood was drawn. My parents ended up driving down with our son to support us in what was going on. After all labs were tested, Dr. Cooper (a Hem/Oc doctor) came in to confirm that yes, my sweet baby girl had Leukemia but further tests would need to be done to determine what kind. We were taken upstairs to the Aflac Cancer Center for the night.
The next morning (Monday, November 21), Dr. Keller (another Hem/Oc doctor) came in and told us that he was 95% sure she had APL (acute promyelocytic) leukemia, which is a rare form with the highest cure rate. At that point, we were transported to the PICU immediately because she had a risk of bleeding out and clotting in the brain.
WBC - 108,000
Platelets - 19,000
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