Jul 27, 10:22pm (Sara)
There is a book called “The Rabbit Who Wants To Fall Asleep”. My mom purchased it for us in hopes of helping our dragon child fall asleep more easily; anyone who is in my every day (or almost every day) life knows we have been struggling with sleep and tantrums at night (not night terrors or nightmares…tantrums and defiance…she can be so mean!). Really any one who has been in my life for the last 37 months knows my children don’t sleep so I’m not sure why I’m surprised. Chemo or no chemo my children hate to sleep. Well then, moving on. Scott has been reading this book to Maya for a few nights in a row now and while one would think it puts kids to sleep because it’s a pretty boring story the ingenious part is that it is a mild form of hypnosis. Well at least we think it’s mild. I wasn’t sold on it until very very recently.
The book offers a quite wonderful suggestion of sleep through guiding the reader to change inflection of voice, use body language, and even repetitive phrases. Scott has actually gone rogue by putting in some of his own power of suggestion. “When you wake in the middle of the night, you’ll feel safe and loved and go back to sleep easily”. And my favorite, “if you see mommy in the middle of the night, you’ll be nice to her”….and not scream in her face. We were pretty excited that maybe it will help Maya fall asleep, especially while here in Oakland. Scott has thought about adding “when the nurse comes into the room you’ll be nice and let her take your vitals while still sleeping”. You know – help us all out. One problem: it clearly states to read to the child (or crappy sleeper) with “no distractions” around. Well a shared room in a hospital is far from “no distractions”. We like our roommate and her family. We even like all the staff but we are happy this is just a one night break in the routine.
The amount of energy Maya had just prior to Scott’s reading of the book was unbelievable. The exhausting day filled with 4 chemo drugs (IV, intrathecal, and oral) plus propofol (anesthesia), midnight travel, and delayed meals was most certainly not evidenced by her enthusiasm, imagination, and excitement. I witnessed a “long neck” crawling all over her bed…yes a long neck dinosaur from the Land Before Time. Did you know there are 14 full length movies from that series? 14, and at least one is a musical. I miss Frozen. After dinner we walked circles in the halls with our new friend Stella and Jessica (Yes! Even more new friends – ones that live 15 minutes away from us). She walked some and she rode her noodle pole some. She chatted with nurses and exhibited such vitality. I had to question if the earlier chemo infusions and lumbar puncture were just some weird dream I had. For the most part, she was such a sweet girl and even better patient.
We got to ask a lot of questions today. We asked many questions to three different doctors actually. I wish I didn’t have to say they all had some version of answers but…well we feel pretty confident with how things are going and what to expect in the coming weeks. I still heard the word “shouldn’t” too many times but the more I hear it when I ask if the delay will affect Maya’s over all prognosis, the better I take it. It sounds like the delay is best since her labs were so low. The doctors explained that there is a higher chance of infection and even longer delay later in treatment if we were to just keep going while labs are low. They all had some version of “she is likely just more sensitive to the chemo”. So I’ll take it and stop wondering. I’ll move on and worry about something else.
Maya exemplified Strong and Calm today. Today was the seventh consecutive boodah-button (port) access with no tears. Not even a whimper as a stranger placed a 3/4 inch needle in her chest. And no music was needed. As Maya laid down on the table for her lumbar puncture, she even chose which side to lay on. She once asked me “Mommy, why does the doctor sneak up on me when I’m sleeping on the bouncy bed and put a sticker on my back?”. We explain why and what is actually going on but she still questions it, of course. “Why do they have to do it while I’m sleeping?” She states it as if she’d just let them stab her in her spine while awake. With the bravery this child has, I almost believe she would. She trusts who we trust. She is comfortable when we are comfortable. We have to be sure to stay strong and calm. We also have to make sure we trust this process and the players. And we certainly do even when we have questions.
I witnessed Hannah (our day nurse) infuse the ARA-C today. This is the chemo that will be delivered to our home tomorrow night and we will be infusing at home. Tomorrow we get to experience “de-accessing” Maya. I’m sure this is hard to imagine for those of you who haven’t seen Maya’s port while accessed, but de-access is pulling the needle out of her chest and removing the darned giant sticker than is stuck to her sensitive skin. We are SO grateful to have found Brava Adhesive Remover spray. I would buy stock in this stuff if I could.
Today was the most intense day of chemo infusion and started part two of DI. Tomorrow she’ll get more ARA-C and then we will infuse the ARA-C on Friday and Saturday. She will get three days off then another 4 days in a row of infusion. During the next two weeks she will also be taking oral chemo every day. The effects of this month’s chemo peak at 1-3 weeks. We’ll have to be careful for a while.
All of this and she still made jokes. She still gave bracelets away. She still smiled and she still made people fall in love with her. Her bald head is a magnet for Love. Who knew?? People in the Starbucks this morning (very early this morning) smiled and I even saw one chuckle because with her shiny head comes shiny eyes. And they brighten even the darkest days. Strangers might not know it is her dragon breath, but we do. We see it and feel it. Maya the Dragon’s strength is tangible and I’m in awe of it daily.
All this being said…I had little hope that Roger the Rabbit, Uncle Yawn, Sleepy Snail, and Heavy-Eyed Owl would do much good in helping the dragon to calm down and close her eyes. I was wrong. Even with the little girl next to us moaning with pain from her wound, television on, and nurses forgetting that its 9pm and children sleep at that point….she was out before the book ended. Thank you Grandma Bella for a brilliant book. I stayed with Maya and Scott until we were confident she was out. I made Scotty’s “night shift” chair bed, got him water, let him go pee and then left. I walked across to the Family House to fall asleep. I miss my family but I know they are safe. I know they are happy and I know we are doing some good work. It is fascinating to see Maya thrive while under pressure. We will catch her when she needs a break.
Thank you from the depths of our hearts for all the love and support. The prayers and the light. The kind words and the quiet wishes. We wouldn’t be as strong or calm without you all.
Love is life.