Monday 14th of January 2008
Bill has been getting the house ready for us. Because of the cast from thigh to toes, the bathroom had to have the shower doors taken off so that we can get Kayla in the tub. We also put a hand held shower head in that is adjustable. Bill had a company that was going to come out on Tuesday to sanitize the house, we did not know we were going home today! A dear friend went over to our house and did the cleaning. Poor Bill has been coming to the hospital and bringing food, working, and getting house ready. Today we will take out one of the seats in the van to make room for Kayla.
I met with physical therapy and they arranged a walker which is so much better for her to walk. Her good leg is still in a lot of pain. Then we arranged a commode and a wheelchair. Kayla is obviously very weak.
Kayla has to get a spinal tap and also a bone marrow. These are so rough. This time Kayla spoke to me during the procedure. Afterwards she described the pain she felt. I guess the Versed (forgetter drug) is not really working but I do not know what to do about it. Kayla slept for many hours after the marrow. I went to get the prescriptions and go clean Ronald McDonald House and check out. They are so gracious and kind.
We arrived home around 8:00 p.m. and put Kayla in the guest bedroom. I went to CVS to get another prescription. The pharmacist was wonderful. He explain photosensitivity to me, explaining that the medicine coming out of the skin is like having millions of tiny magnifying glasses on your skin. This is why people get burned by the sun. Their skin is not sensitive but the magnifiers make the sun more powerful and thus bad sunburns can happen.
Off to Walmart to get a bath stool, shower curtain, and some very soft clothes for Kayla as the chemo has made her skin incredibly sensitive.
Tuesday 15 January 2008. Got to bed at 2:30 in the morning and was up at 7:00 am. There is so much to do. Laundry, cleaning, unpacking, calling for wheelchair, setting up home-bound school, sheesh! Keeping Kayla comfortable and happy in between all of this.
At night Bill and I took her out for a walk with our dogs then we played ball in the living room. Kayla is still serious and not laughing. We are concerned and keep trying to find ways to entertain her.
I woke Kayla at 8:00 a.m. to try and get her onto a schedule. It didn’t work, she was up until midnight even though she is visibly exhausted. She also get ups to eat. The steroids make her ravenous and she is turning into a moon face.
We went to the clinic regarding the severe leg pain. They gave us codeine to try for the pain.
Thursday, 17 January 2008 Kayla took the codeine and tried to walk 30 minutes after she took the medicine. It did nothing. Now she scoots across the floor on her butt. At least this is exercise. I got the Cytogenetics results. Cytogenetics is the study of the chromasomes of the Leukemia cells. As a result Kayla was switched from low risk to average risk. With Leukemia there are several stages; low risk which means six months of chemo then onto maintenance which is once a month chemo. The survival rate for low risk 87%. Average risk is a similar program. Average risk high is our new category and this is a total of 8 months of heavier chemo for us. The survival rate goes down to 65% – 70%. I cannot tell you how bummed I was by this! High risk is usually 8 months of chemo along with radiation and I do not know what the survival rates are. This is actually a very complex subject because the doctors use many tools to determine risk factors, i.e., genetic studies, timely response, the type of Leukemia cell, etc.
I asked the doctors for nutritional help, but they had no real answers. Nutritionally, they are no real help. Reading the internet gets scary so I only go to medical sites now. Any chance I get, I do research on the internet and read cancer books searching, searching, searching. Too many questions are unanswered.
Friday, 18 January 2008. Terrible day. Kayla was irritable and nasty all day. Everything I tried to do for her was wrong, after the third screaming fit I yelled back at her and we both burst into tears. We were on the kitchen floor crying and hugging.
I went and bought Zantac for her stomach because the steroids irritate the stomach lining.
Blueberry, cream, ice, banana, Jay Robb Protein powder, (www.jayrobb.com) made a fabulous shake!
Kayla was in the bathroom and called me into the room. “Mom, look!” She had a huge gob of hair in her hands and she was trying to smile while she said it was okay. I acted cool, calm and collected and then went out onto the porch and sobbed. No matter how prepared one is for the hair loss, it is pretty traumatic. At least its taking a couple of weeks to fall out.
Saturday, 19 January 2008. Kayla refused to get out of bed. I would not feed her until she came to the kitchen. A friend, Rebecca, came over and they played.
The pharmacist explained that Zantac has to be taken 1 hour before giving the steroids, otherwise the steroids eat the stomach lining. Why didn’t any of the medical staff explain this to me? It is great being able to go to the pharmacy and get free consultations!