Saturday April 18th, 2008. Hurt Feet.
This has been a tough week. Kayla hurt her feet twice but will not wear shoes. Why are kids so stubborn? When one cannot reason with someone else because of being stubborn the the door has shut to any reason, that is the time to quit trying.
Wednesday Kayla got a mouth sore, it has progressively gotten more painful until yesterday, when she could not eat dinner. I believe this mouth sore showed up because Kayla has not had her supplements for three days prior to the mouth sore. The doctor had guaranteed that Kayla would get mouth sores after every treatment and by the time the mouth sore healed she would be due for her next treatment of chemo. Considering what the doctor said, Kayla has done incredibly well. When I took a good look at Kayla’s mouth sore. She also had small white spots and per another patient these spots are more sores forming. I decided to double the amount of glutamine immediately and so far no sores have actually formed. Of course Kayla did not put up a fight about the glutamine because she wants to get rid of the sores. That at least was helpful.
On the 7th of April a bone marrow was done and the Children’s Oncology Group will not give us the results. No matter how hard I tried I could not get them. Have you ever heard of such a thing? It seems very unfair to put a patient through such a painful procedure and never given them the results! I found this very upsetting.
Kayla has been asking to walk to the clinic and I have been telling her it is too far. I tried to convince her to practice more in the house first. While trying to explain this to her she told me “you don’t want me to walk”.
I lost it when she said this and just started to cry and had a hard time trying not to cry. It was as if the fountain overflowed. I told Bill, my husband, that I am tired of always being the hammer in the family. Bill got it and talked to Kayla and I, about the Leukemia being forced upon both of us. This was such a basic truth that we both felt a lot better. The day ended much better.
Sunday April 19th, 2008.
We are going to try giving Kayla a protein shake at 11:00 at night to see if this helps the hunger in the morning. The cut off for solid foods is midnight if she is going to have a procedure the next day. Kayla is enjoying her protein shakes and her mouth sore is almost completely gone from giving her the glutamine powder again. Her lips are cracked and peeling, which is a sure sign a sign of dehydration. I am trying to get her to drink more.
Kayla had a friend come over, so she at least was able to have some fun for several hours.