Thursday 27 February 2008.
I have been out of my mind trying to figure out what the survival rates are for standard risk high. Apparently with other cancers you have stages, I, II, III, IV. With Leukemia it is low risk, standard risk and high risk. Risk for what – death? Illness? What? Then the other issue is “chemo brain”. Apparently, doctors have ignored this side effect, which is cognitive impairment. Now this is getting recognition but the solutions do not seem that great. Drugs seem to be the solution and this is unacceptable to me. Last week the physician’s assistant gave me a brochure on alternative therapies for cancer and also a piece of paper, which explains “standard risk high”. I looked at the brochure and it did not give any new information. In other words it had a small blurb on Chiropractic, Acupuncture, Massage, and others. None of these are applicable to Kayla because Chiropractic is out of the question due to bone breakage she has had. Acupuncture, there is no way she would allow needles to be used on her. I can’t blame her either and would not push the issue. Massage won’t work because she has very sore spots all over her body. I have to be careful when I put the cream on her because I can hurt her just by rubbing. This brochure, to me, was a waste of time.
The page. This one piece of paper was incomprehensible. I just threw it on the bed and did not go any further. Yesterday, Claudia stated that the piece of paper she gave explained the risks fully. When we got home, I decided to decipher the information. I had to pull up two different medical dictionaries on the internet and practically translate sentences that were filled with abbreviations and technical words that literally looked like gibberish. So frustrating! But finally I learned some things and here it is. BFM stands for Berlin-Frankfurt-Munster, a study done over there and given the name of BFM. It is the backbone of treatment protocol for ALL leukemia in the world and has been for decades. EFS stands for Event Free Survival. They never say cured. They use Event Free Survival and the long you have that the higher the chance that the leukemia will not come back. There were many other abbreviations and technical medical terms that I had to wade through on the computer. Long and short of the two paragraphs is this; 70% chance of event free survival. That’s a hell of a lot better than 65%!
Back to standard risk high. In a nutshell it means that the Leukemia cells are not responding to lesser therapy. The higher amounts of chemo are training the cells to give up and stop the obsessive multiplication of themselves. Because the chemo is a rough regimen, this adds a plethora of side effects. The higher risks are relapse, complications, and death. Joy oh joy! This battle is unrelenting and long. The head-trips are numerous. In an effort to keep myself sane I have started working out and taking vitamins everyday along with a protein shake. No more junk food!
I know I am being redundant in these recent blogs. You have no idea how often these questions go round and round in my head. Its almost unrelenting. SO SORRY.
Thursday we went to the clinic. Kayla and I hate the clinic. The people are nice and all, but we associate the clinic with pain. It was the day for PEG. This is chemo that has to be done intramuscularly, two needles in the thigh. Before we left we did the Emla cream on the port and leg. Kayla was trying to talk herself into being brave and telling me how she was going to count to three, then the needles get put into the skin at the same time, and she will push the medication into her thigh. This is exactly what she did. The nurses have never seen a child do this. Claudia came in afterwards and said, “you didn’t get the PEG yet right?” Yes, we did, it is done. Why didn’t I hear screaming? We proceed to tell her how Kayla does this procedure and she frowns and shakes her head saying it is not acceptable. I tell her that I can sign a waiver, to absolve the clinic of any liability but this is how this procedure will be done from here on out!
What ever makes Kayla feel strong and able to participate in her treatment, we will do, period! This is only the second time she has had these PEG shots and she was a real brave girl. I am so very, very proud of her!
Next, I plan on making a sign that Kayla reads everyday. This is the positive thinking sign. That is what I have to work on now.
We also spoke about alternatives to help Kayla and Claudia told me they have nothing to offer me. That I am doing far more than anyone they have seen at the clinic. I will figure it out of that there is no doubt because I never, ever give up!
Yes, she looks afraid in the photo but she is NOT crying! She is facing her fear and in time this gets so much easier that she doesn’t even frown. I know because I am editing and correcting this blog years after cancer. And that is how I have this wonderful and seemingly magical insight.