More Changes

Sunday January 20th, 2008

Kayla is completely depressed  about her hair and I do not know what to do except get her attention off of it.  The weekend antibiotics are really kicking her butt.  She is really tired all of the time.  Her skin is now very sensitive and gets irritated very easily.  I went out and bought some creams for this, and also more soft clothes. 

When we clean the commode there are times that it is horrendous.  I know the chemo quite toxic, but this was a real demonstration.  I made our own air freshener out of grain alcohol and lemon grass essential oil because the smell of Kayla’s bowels sometimes pervades half of our house.

Monday, January 21, 2008.  We had to go to the clinic.  When we arrived we were told that a marrow had to be done.  While Kayla was getting this done she was completely coherent, felt everything and I had to hold her down.  We did deep breathing together and she was trying to talk.  At one point she said “mommy, you are a good mommy”.  I almost lost it right there.  Right after this procedure was done the doctor said that Kayla’s prognosis was not good.  This was so shocking to me that I could not speak and then he walked out. He said this right in front of her – I could’ve just punched him for doing that. Here I am starting to feel like I am getting a grip and the doctor hits me with this bomb shell and it was in the room where Kayla was.

It is now 2:40 in the morning and I have been up since 5:00 am.  Kayla is in pain from the marrow taken.  What do you do?  Just keep going and try not to keep crying.

While we were at the hospital I saw a girl in the bone marrow unit.  Wow, that was pretty bad.  The images are too much to describe.

One of my husbands co-workers talked to Bill about the cramps that Kayla gets.  He told us it was Neuropathy, which is nerve pain from some chemo drugs.  Can you believe it?  Kayla has been in pain since the 8th of January when she started chemo and no one said anything about Neuropathy!

The photo here was taken when her hair started to fall out. I wanted a close up of her beautiful brows, lashes and hair. I know they will come back but I wanted a photo anyway.

Tuesday, January 22nd 2008.  Got Neurontin for the neuropathy,  Told that it will take a few days to kick in.  We were given a prescription for morphine because over the counter drugs cannot be given to Leukemia patients due to the asperine content, it will thin the blood.  A friend came with me to the clinic for moral support, it helped so much.  I still feel completely overwhelmed by all of this.  While at the clinic the doctors approved the following; Parsley tea for the kidneys and jauntice, B2 & B6, and Alkaline water.

We also spoke about Kayla being lucid during the procedures.  The doctor said the only option was to go to the operating room.  Kayla pipes up that this is what she wants and says this in a very firm voice.

Later that night I told Kayla that she was acting like a grownup when she made her medical decision today.  She was surprised and said “really?”  She was beaming when I affirmed how grown up she is!

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Deb Witter

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