Tag - antibiotics

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Death
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More Changes

Death

Monday April 20th, 2008.

Kayla’s blood counts are still too low to do chemo. This is now the third week of treatment that we have missed. The doctor told us to skip the weekend antibiotic because they think it is the antibiotic that is holding her counts down. The doctor announced that another bone marrow is needed and I told her I did not want Kayla to have anymore done, if at all possible.

Megan, another girl that has been battling Leukemia for six years, was turned over to hospice. Her mother and I went and talked in the parking lot. I cried when I heard the news. Then her mom tells me that Megan has accepted the whole thing and is forcing the mother to take her to pick out coffins. Megan is doing her Will and wants her trust to go to another 2 year old little girl who is battling brain cancer. They are also going to have a fund raiser so that Megan can do all of the things that she has not been able to do while on treatment. I met Megan in the Bone Marrow transplant unit. She is one tough chick. She was the girl who went through whole body radiation to kill her immune system. The radiation was so strong that she looked like a ghoul from a movie and her mouth could not shut because it was a giant bloody, crusty sore. I had terrible nightmares for two weeks after seeing her suffering. These are the types of things that are not said about bone marrow transplants. Later I saw a documentary on PBS and it stated that 9 out of ten patients do not make it through the bone marrow transplant process. I do not know if the statistics have improved. I do know of a baby that survived it and is doing well years later.

It makes me so mad and upset that Megan is going to die. Her mom is trying to act normal but she is completely out of her mind. This, my friends, is the dark part of cancer. Another interesting thing the mom told me is that a law is possibly going to be passed so that pediatricians will take blood tests at certain times of a child’s growth to check for cancer. Apparently, all the cells go through major changes at certain ages and this would be the time to check the blood for cancer markers. Personally I think that this is a very good thing.

This photo was at the fund raiser and Megan was tired. It was a long hot day. Its too depressing to tell you all of the heart break this family went through. They lost everything due to six years of treatment and lack of insurance.

The next day Kayla had a good day with swimming and school. We took a long walk (with the wheelchair) together in our neighborhood and saw a bunch of kids hanging out. We went and talked to them. Kayla had such a wistful look on her face when she was talking to the kids. She feels that she is missing out on her regular kid world. And she is right about that. This is also some of the most important and formative years of her life spent fighting a disease instead of going through the normal progress of a seven year old.

We started the liquid multi vitamin today. That was a total pain in the ass to figure out. The doctors told me a multivitamin was fine but they said I had to get one with a low dose of folic acid. (Folic Acid is a B vitamin that makes Leukemia cells go nuts and multiply much faster.) I went to the health food store and the drug store and the amounts of folic acid in the vitamins were all over the chart. When I went back to the clinic I asked the doctor to give me a folic acid dose that would be safe. Back to the stores, nothing existed with the numbers that the doctor gave me. Finally I found a liquid multivitamin that had food sources listed and the vitamin content seemed fine. I printed out the label and brought it into the clinic and the doctor said a half dose would be fine. This product is manufactured by Source Of Life, and the name of the product is Animal Parade Children’s Multi-vitamin. One would think that an adult could take this too by just doubling the dosage amount. Finally a vitamin was okayed!

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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