I went home on tuesday afternoon, I thought I was going to take a nap and then go back to the hospital, but I was so tired that I passed out and had a loooong sleep from 5pm to 7am the next day. I felt I could be in the energizer commercial…energizer bunny here I come.
After driving Taylor to school, I went to the hospital and found both Maya and Kirby still sleeping. They had a rough night with Maya going to the toilet pretty often and sometimes screaming in pain due to the mucositis. Her frequent lose stools stopped 2 days ago, but then they came back due to the antibiotics…ahhhh. Maya is not longer nauseous, she is retching a lot though due to her dry throat, but she is still taking granisetron every 12 hours, just in case.
Maya’s morphine was increased to 40mcg/kg, this seemed to control her pain. She only needed 2 additional boluses , one in the morning and the second one late afternoon. As Kirby mentioned in the last post, Maya is spitting a lot as she is afraid to swallow her saliva due to the pain, and so she spits and spits and spits.
Maya slept for a good part of the day on and off. In the morning we could tell she was not very comfortable, by midafternoon she actually talked , and played for a tiny bit. There were a few moments of tears, Maya gets frustrated “ohh am I ever going to swallow again?…why is my mouth so dry?”. The last two hours I have spent dipping cotton swaps in iced water and rubbing them on Maya’s lips, it seemed to help a bit with her dry lips.
When Maya is not comfortable, her behaviour changes and so this afternoon she pretty much marked her room as her kingdom, if you came inside you had to do what she ordered you. If you did something that she did not like you would be vanished, and so mom was vanished several times… “Out, Out, Out…I said out of the room NOW” ahhh, and so I went out, I thought she would call me to come in, but she did not. I was standing by the door… 30 minutes passed by, and I sneaked in, and Maya went again “Out, Out!” and she actually pointed to the door with her finger. So again I went out for another 20 minutes. Karen arrived, so I thought she would let Karen in, but no, we were both vanished for a long time. Maya said “Don’t you understand I want to be alone” Then Karen was allowed but no mom….. by 6pm I was allowed in but I had to watch this movie, if Maya saw my eyes drifting away from the screen, she would scream “WATCH!!” ohh man… but today i kept my cool and all I could say was “yes Maya, ok Maya, yes Maya, ok Maya”.
Because Maya’s mouth is full of sores, she cannot really talk, or I should say it is difficult to understand her, and so she makes noises when she wants something, but we do not know what she wants and she gets so frustrated that she cries. So what did Maya do, she created a code of sounds, she said” mom, if I go ‘mmm’ it means I want to spit. If I go ‘ahhh’ it means I have to pee”, but sometimes I get mixed up with the codes and I have to bear Maya’s rage “How many times have I told you the sounds, how many times?” …..I take a deep breath
After her night bath and her nightly food massage when Maya and I were alone, she actually asked me to lie down with her….but i then realized that it was because she was watching scooby doo and she was afraid of the monsters. Once scooby doo was over I was asked to get up from the bed.. .sniff, sniff, sniff. When I asked her if she was ready to rinse her mouth she said “mooom you are tooo demanding! you always say do this, do that” I almost laughed, but I did not dare because as you all know sometimes I become afraid of my daughter, who is 4 years old!!!! There were moments of sweetness though, at some point Maya said “mom, I am afraid you would be up for a long time, because I cannot stop spitting”… I smiled because she used “I am afraid” and gave her a kiss and said “do not worry, I had lots of coffee so I will be up all night to take care of you”, Maya just gave me a sweet smile… I love her!
Maya last spiked a fever at 8am wednesday morning, after that her temperature has been around 37C which is GREAT, if she keeps like this for another 24 hours the antibiotics would be stopped and hopefully her frequent stools would go away. Again we hope that the mucositis does not get any worse. What she is going through is what was expected, we were warned of that, we just hope that the other things that they said may happen do not really happen.
I wanted to end this by saying thanks to all of our friends, neighbours, family and all of you who follow the blog. We certainly think that your prayers, chants, thoughts, and positive energy our way have given Maya the strength she has. Yes Maya sometimes is in pain, but it does not compare to the horror we went through when Maya had hemorragic cystatis after cycle 2… we do believe that Maya’s strength come from all of you.