During Cycle 1 she was nauseous in the mornings. I have gotten used to giving her anti nausea medicine as soon as she wakes up to combat this symptom. She still needs the medicine even on the last day of this cycle.
Also she experienced a cold with pink eye and a stomach flu. Her white blood counts were high and we were able to stay out of the hospital. Her immune system was able to get her out of both of these viruses.
For a week and a half Alanna lost some of her hearing. Through chemo drugs she has a 60% chance of losing some of her hearing. We had thought she had lost a great amount. We were watching TV with the volume up pretty loud. Everything we needed to tell her we had to say it twice with considerable volume. Just before her hearing test (She has an audiology appointment every cycle) she started hearing again. The hearing test showed she had considerable fluid in her right ear that was inhibiting her hearing. Also, the left ear had recently drained of fluid. So the result is that she has not lost her hearing yet and there is treatment for the fluid problem.
We spent last Sunday morning in Goleta in the ER getting a new NG tube. Our tube had gotten hopelessly clogged. We tried so hard not to go to the ER that we tried to force water and coke through the tube and made it rain coke because it kept backfiring on us. We were excited to go to church all together and sadly had to cancel and drive to the ER instead. It is never fun to get an NG tube put down Alanna's nose but she did fabulous. She left with a big smile and all of the staff relishing in her cuteness and sweetness.
We caught some blissful moments:
The Photo Booth at the Zoo
Petting Alanna's sweet goat friend, Velvet.
Bowling and Arcade games. Bowling was fun and helped Alanna feel a bit more normal since this is an activity we used to do frequently. Yes, mommy and daddy were good walkers for her so she didn't fall but the joy on her face was completely worth it!
Taking care of her fish at Pop and Grandma's house
The first day of First Grade. Alanna's teacher comes to her house to teach her three times a week. He is kind and patient and I hope this will be a good year. I am also quite hopeful that second grade will be in normal school. We will miss the social aspect of school so much.
We also went miniature golfing. The facility claimed to be wheelchair accessible but it turned out the golf courses were not. We ended up carrying Alanna and her wheelchair up and down stairs and it got very exhausting very quickly. We only made it 12 holes before we went home. Although Alanna was happy and did a good job moving her body.
I have been asked it I will ever get used to the routine of having a cancer baby. My answer is absolutely not. There is no routine of having a child in and out of the hospital. There is no way to predict what will happen next. No way to plan in advance. We can plan all we want but as soon as one little thing happens all of our plans don't matter. We were very blessed the last six weeks not needing to be admitted to the hospital for any unscheduled visits. However; I am learning to live with unexpected happenings. I will never feel like this is normal or be completely relaxed. I love the small moments when things feel good, when they allow us hope that someday we will feel that way all of the time. But as for now I pray for those simple and small moments and I notice each and every single one. Nothing is taken for granted. I am so extremely grateful for those of you who help bring us hope and love. We can not have these moments without searching for them right now but they are there and we love it.
