Tuesday April 22nd, 2008 Insurance
Today is the second day of taking the liquid multi-vitamin, Kayla seems much calmer, while having more energy. Probably sounds like a weird description but I do not know how else it could be described. Over the past weeks Kayla’s energy level has definitely improved. I attribute this to all of the supplements that she is taking and the Omega 3,6,9 oils.
One of the parents called me today, in a complete tizzy that her two-year-old daughter, is battling brain tumors and the insurance company is refusing to pay for procedures and trying to demand that she switch hospitals. It is so disgusting that these companies can do this to their clients, especially when they are battling something so debilitating as cancer, they are disgusting! I have heard of these kinds of things over the years but never really paid attention to them. Now I regret not trying to do something about it. There is a major situation in America with Healthcare and Insurance!
Her doctors figured out how to get her daughter treated by admitting her into the hospital and giving her the needed shots in house. They figured out if they did it this way insurance would pay. We have a real crisis looming in our future regarding insurance…
Wednesday April 23rd 2008.
After breakfast I took Kayla to the park because no one would be there during school hours. It was a beautiful day, sunny, nice breeze, and the perfect temperature. Kayla loved swinging on the swing while I tried to tickle her. She then went and climbed on all of the tubes and slide in the park. She also walked the equivalent of a small block. This is a first! When we got back to the house I made her protein shake and added ¼ teaspoon of Spirulina and Kayla loved it. Normally it takes her a very long time to drink her shakes no matter how I make them, but this time she sucked it down and said that the green stuff really tasted good. Who would’a thought? Kayla did not argue about anything today. Ever since I got the news about Megan’s impending death, I decided that I did not want to get stuck into just doing our treatments and not enjoying life. Because of Megan, I had an epiphany and make the effort to figure out joyful things everyday. This has made a big difference for all of us.
Friday April 25th, 2008.
Beach Day! We went to the beach and the weather was perfect! Kayla had a great time but she misses being with kids everyday. Oh well, at least we got out and enjoyed some new scenery and weather. Kayla’s appetite and digestion are doing well.
Monday April 28th, 2008.
Kayla’s ANC is 2800 so today will be a big chemo day. She will get Methotrexate in her spine, Vincristine in her port and Doxorubicin in her port. Steroids start today, but I thought I had two months before the start of this phase. I asked about it and the nurse said I was incorrect. I am almost sure I am not mistaken but they say I am.
I asked the physicians assistant about supplements for Kayla’s bones and she replied that she is doing fine. I hate these f___ing people sometimes because they know all of the side effects but do nothing to help the patient mitigate these effects. To me it is a complete lack of responsibility on the whole medical system to not invest money, time and effort into complimentary and alternative therapies that help the patient get through chemo. It is just maddening! If there were this type of help and support for cancer patients I think the quality of life would be greatly improved. What I see instead is the use of more drugs for every symptom. This is not a solution. Chemo wipes out good cells as well as cancer cells, the steroids suppress the immune system. I know that these things have to be done, but why not use vitamins to help the body cope? Kayla now weighs 58 ½ pounds. She has lost four pounds since she started treatment while she has continued to grow.
Wednesday April 30th, 2008.
The steroids are kicking Kayla’s ass. She is in a lot of pain. I found a book that we had Reflexology for Beginners, it is helping a lot because I can look for the area of pain and then massage the corresponding area that the book tells you to massage. It seems to be helping her and she likes it.
The steroids cause problems with her stomach and even though Kayla is taking Prevacid, she is still having stomach pain. We made a steroid chart so that we can count down the days until we are done. She liked this activity.
We walked the dogs together, and later she had her protein shake. At 3:00 in the afternoon Kayla felt really bad, tired and dizzy. She took a long nap. I feel like I am on a roller-coaster ride and I can’t get off!