Wednesday January 9th, 2008
Kayla was ordered out of bed today. Bethany took Kayla to the roof top playground and Kayla played with water paint. Kayla has become serious which is very unlike her. It is difficult to get her to smile. This concerns me greatly. After play time on the roof Kayla was tired out and slept.
Cindy, a Nurse Practitioner, had a two hour meeting with me explaining what we are going to go through. Cleaning requirements, medications, nutrition, etc. I took copious notes.
Thursday, January 10th, 2008 Today we do two inter-muscular shots with Peg-Aspariginase, a chemo drug that has to be delivered through a muscle. It took 45 minutes to calm Kayla down. The nurses tried everything and she was just hysterical. Because the numbing cream was rubbed off of her leg, we had to go ahead and do the shots. Just as we all tightened our grip on Kayla, she came to her senses and told us to count to three. On three the needles went in and Kayla asked if she could push the medicine in. The nurse okayed this and she did it. Obviously it was quite painful as she was crying in pain, but she continued and moved onto the next needle until done. When we arrived back in the room I asked the nurse to tell Kayla how many children did the medicine like Kayla. She tells us that she has never seen a child do these shots themselves!
Pretty soon word traveled fast how Kayla plunged her own chemo needles. She was an overnight sensation with the nurses. One nurse came to see me and said she was in a bit of trouble for allowing Kayla to hold the syringe. I told her to tell management that I would be willing to sign any type of waiver that protects the hospital because anything that empowers our daughter is wanted, whether they like it or not. Kayla obviously felt empowered by holding the syringe and slowly mushing the medication in. We would never sue any institution that allowed her to do what she did. Even though I offered, they never asked me to sign a waiver and for the rest of treatment she would do the needle for those intermuscular chemo shots.
Later in the day a nurse came by and ordered Kayla to walk because she has been bed bound for too long. Kayla cried and screamed in pain. It looked like she was getting charley horses in her leg. The nurses insisted she continue walking. It was a rough ride but she got through it.
Friday, January 11th, 2008 My back is so out, I can barely get out of bed. Ronald McDonald House has a masseuse who volunteers with massage on fridays. I can’t believe it. The massage is great and she shows me exercises to fix the spasms in my back, along with ice packs, my back is better by 1:00 in the afternoon so I can get back to the hospital.
No procedures today! Kayla gets a blood transfusion which takes four hours to complete. The blood makes her look normal instead of ill. Noticeable difference in her demeanor after the transfusion, more energy and animated.
Saturday January 12th, 2008
My hunt has been to find other kids that are happy and bring them to our room in the hospital. I found JD who has a serious blood disorder. Kayla played with this boy and they really hit it off. She was also asking him about his disease. He proceeded to tell her about his daily shots, etc. This was fortuitous because Kayla got to see someone who has a disease that will not go away. The idea of having to get shots everyday was horrendous to her. She is still not back to her old vibrant self but bringing other kids to be with her makes a huge difference.
Miss Bina came to see Kayla. Wow. She is Kayla’s teacher from school. She brought gifts, a scrap book and cards that Kayla’s class mates wrote for her. Kayla was completely entranced. She LOVES her teacher. Bina spent several hours with Kayla. Visits and company are a precious gift that we really appreciate.
Sunday 13 January 2008. Kayla is sleeping for many hours during the day. She will get a blood transfusion this afternoon and this will energize her into the night. We did Leukemia 101 on the white board in the room. She is trying to understand her illness. Found out we will be discharged tomorrow, which scares the shit out of me. The nurses and the machines are like a security blanket and there is so much to know and too many unknowns.
No one has taught me anything about sanitary methods so I went and watched house-keeping clean a room. Here is what they did; stripped the bed. Sprayed it down with a product from a spray bottle and wiped off the bed with clean water. Everything in the room that anyone touches was first sprayed down and then wiped with a clean rag and fresh water. I asked the lady about the product they use and it is called Virex TB. This product meets government guidelines for blood born parthogens, the label is quite impressive. On the internet their website is www.Uclean.com A case of this stuff costs $40.00 which would last a very long time. I really like it.