Ainsley slept very well the night before surgery. There were some morning delays, so her 8:15 case didn't get started until 10:00 or so. Thankfully she slept in and didn't have to feel any hunger or thirst until right before going down stairs. The good news is it gave time for Jenny to get the girls over to Jon and Debbie's to take them to school with their twins (the wonderful Kennedie and Emilie) and still get down to the hospital before surgery.
She (Ainsley, not Jenny) was unhappy to wake up. I could tell she was afraid. She wanted nothing to do with putting the gown on, taking her medicines, or anything else that would progress her toward surgery. She finally took the Versed (happy-juice as it is called) and everything changed. It is pink medicine that supposedly tastes terrible, but once it is in, life becomes very funny and relaxed. We will post some video in the future, but she became all smiles and laughs. She looked at me while snuggling Jenny and said "Daddy, you have two heads!" She stared up at Jenny and said "Mommy, your mouth looks funny." She laughed at most things and we had a hard time understanding her slurred speech. Seeing her wheel away from us was heart-wrenching. You could still see the fear in her eyes and the hesitancy to go with the operating room nurses, but thankfully she was disinhibited enough that she couldn't protest.
Three procedures were completed at the same time: 1) The "port" which is a permanent access site that is placed in the chest wall that allows them to give blood, medicine, and fluids; but also allows them to draw blood. It replaces the IV and in the chemotherapy world, becomes your "best friend." No more tourniquets and holding down for IV access. Supposedly the kids get used to coming in, lifting their shirts, and letting the port get accessed. It is designed to last the entire 2.5 to 3 years of chemotherapy. When it is needed, a simple needle poke into a large barrel that is underneath the skin allows access for anything. When it is not needed, everything is under the skin so Ainsley will be able to go swim, bathe, shower, etc. It rests underneath the skin on her left side, below the collar bone, similar to a pace maker. 2) A lumbar puncture (also known as a spinal tap). During this procedure they drew out some cerebrospinal fluid (CSF--the fluid that surrounds your brain and spinal cord) to test for cancer cells and also delivered the first dose of chemotherapy intrathecally (into the CSF). We are happy to report that there were no lymphoblasts (the cancer cells) in her CSF, which means she likely will not need any radiation therapy. 3) A bone marrow biopsy from her hip.
We were relieved when the surgeon came to tell us all went well. We were more relieved to see our little fighter showing her personality in the recovery room. She wanted a "juice box" but when it came as juice in a sippy-cup, well, that was unacceptable and she wasn't afraid to admit it. The next attempt at a juice with a straw in it was not enough either. Not until we got to the room and got her a juice box was her thirst satisfied. But the good news is, despite her opposition to the juice box, she turned on the charm with the recovery room nurses and they were smiling and laughing with her by the end, or perhaps they were high-fiving what she was not there to show them how tough she is.
Not long after returning to the room, she complained of a headache and began vomiting. This could have been from the anesthesia or from the lumbar puncture. She only had a few sips of juice box and a part of a donut after surgery, so that was quickly thrown up and she was dry heaving after that. This continued off and on for the next 2 hours. One episode left a few specks of blood in what she threw up, because she was heaving so hard. Not a fun sight to see on my little girl that has few platelets and low hemoglobin.
This was also a day that Ainsley expressed some anger. She hates the feeling of tape being removed from her skin. The EMLA numbing cream they put on before putting her IV in on day one was great for the needle poke, but taking the tegederm strips off that they put over the cream to get it to be absorbed better was probably worse than the needle stick would have been. So from day one, removing tape, EKG pads, bandaids, or dressing covers has been a sad event met by a fighter's spirit. I also see Ainsley channeling that anger towards me (Daddy) because I am always the one holding her when the shots are given, tape is removed, or medicine is given.
Medicine, that is a whole other story! She has to take medicine by mouth multiple times a day, and it frankly tastes terrible to her. It is all liquid form and has made her puke a few times. Mostly she just doesn't want it and puts up a tremendous battle. She got her evening dose right after Jenny had taken the rest of the family home to sleep. Ainsley said "I wish Mommy was here and not you!" I told her that she would have to take the medicine no matter who was here. She tried her best to be mad at me and, I'll admit, did a great job at deflecting my impeccably timed humorous efforts... Ultimately, the medicine was taken and we snuggled. I told her I love her and sometimes I have to make sure she does hard things in order to help her feel better. We are getting to the point that she is 70% happy with me and 30% mad that I brought her here.
Every day so far she has been able to see her sisters. She lights up and perks up like you can't believe when they arrive. It has been hard for the older girls. We have tried to keep the discussion open with them and tried to find ways to help each of them to feel special. It is hard because Cancer is fighting the whole family. It is in Ainsley's body, but it deeply impacts each of us. Ava is 5, and for her, she seems to see it as her playmate is in the hospital and not at home to play. When she comes to the hospital she sees Ainsley, with new toys and stuffed animals and thinks "wow, she's lucky, look at what she got!" Rhyan, age 7, is a little harder to read. She is thinking deeply about things, and afraid of what it all means. She tries to use humor to ease her fears. Meili, age 9 going on motherhood, is full of turmoil as she tries to be the caretaker of her two younger sisters because that is how she thinks and functions. We frequently remind her that we are the parents and she can be a kid. But that is easier said than done; she's a very mature 9 year old. Worries of Ainsley definitely have distracted her since she heard the news.
On the way to school on Wednesday morning, Meili asked me "why did this have to happen to Ainsley?" I said "That is a really good question, and I don't know the answer." We talked some more and I told her that "I do know that Heavenly Father knows exactly what each of us can handle in our lives, and Ainsley is facing something that very few can handle but Heavenly Father knows that she can." Our theme, as you have seen, is that Cancer picked the wrong girl to mess with. Ainsley Elleanor Smedley came out swinging as a baby and has not slowed down since. Sweet with a whole lot of spice. As the car got closer to school and the tears started to well up in the girl's eyes, I was grateful for this imagery. The girls laughed as they pictured Ainsley clawing at Cancer (because each of them have felt her clawing, and it hurts!) We laughed as everyone got the chance to chime in how Ainsley was going to claw, bite, spit on, and "toot in the face of" cancer. Not sure why those images are all so funny around our home, but the kids get a kick out of the topic and so do we. We pulled up to the school and repeated what we talked about on the morning of the phone call: Now is the time to be insanely courageous and take the first step out of the car. From there, smile and know that everything is going to be ok. They put on their brave faces and walked right inside. They have done the same each morning since then. My kids have INSANE COURAGE!
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