Chemo Kid

The days after Chemo are difficult; actually 1 1/2 weeks after Chemo are difficult. After Chemo Raylee has nausea for days. She takes nausea medication but she dislikes taking them. I don't blame her for disliking it....but I do ensure she has them. She would feel extremely worse without them and would probably be really weak. Some of the difficulty in the medication is she has them frequently. Each day I write down a schedule with each medication listed and the time she needs it. This helps Jerry and I stay on track. Lately I have to write down everything to remember....I struggle focusing on other things; my mind and heart are overwhelmed with the unknown and unpredictableness of what's going on with my little cancer kid (Jerry started calling her "our Chemo kid"). I also worry about Jorja and if all her needs are being met. She struggles with feeling jealous of Raylee and gets really scared when Raylee is throwing up. This battle against cancer isn't just Raylee's struggle and war....it is a family, friend, medical staff, and community battle. We have great supporters out there and we love and appreciate you so much! We have some new support groups in our life that I will blog about another time.

This weekend we continued focusing on med management and struggled with Raylee to take all of the medicine. I have tried what the child life specialist recommended, and sometimes it helps. At the hospital I discussed with the nurse practitioner Raylee's bad experience with liquid oral meds and she was able to get the main nausea medication for Chemo patients in meltaway tablets. She said it is difficult to get insurance companies to approve it but she was able to. I am not sure why insurance companies don't like approving the meltaways....these tablets were actually 7 times less expensive than the liquid medicine. They are also a lot easier for young children to take. It doesn't taste good so we put it on a spoon full of sugar to try to encourage Raylee to take it.....I am desperate to try almost anything.

I am trying to gear up for this next week. This will be the 7-to-10 day period after Chemo when the blood cells are at their lowest. It is a fearful time due to her weak immune system and an already over protective mother puts her guard up even more. We have hand sanitizer all over our home, Clorox wipes at hands reach, and disinfectant spray ready to go. My hands are so dry from washing and sanitizing them every 5 minutes. I will spend next week keeping Raylee away from germs and bacteria as much as possible. This means she will not have many visitors. I can't remember the last time we took her out in public (besides the hospital) since this nightmare stated. We get extra extra cautious at this time and super protective. She had good moments this weekend and played more than I thought she would. She seemed to be doing well so we slowed down the antinausea meds and on Sunday stopped them...this was a mistake however; Sunday night she was sick again :( Because she is so young she still doesn't have the ability to really express how she feels or if she is getting nausea--it is somewhat a guessing game. This round of Chemo has been easier then the last; the oncologist said it would be harder. I think this time we knew more what to expect.