Day one of round 3 complete! I am so glad this day is over. It's for sure the hardest of the three. Hardest for Kayla and by default, hardest for me. It's so easy once she is here and her counts start to climb to put the reality of that drug and what it does in the back of my mind. It's so easy to think good thoughts and put the fears and worries away (for at least most of the day). I knew when I dropped Kayla and Denny off last night that I would be going through these feelings again today. I tried so hard to make them different. To prepare myself or find ways quickly, before reality set in, to change them somehow. You know how you might have seen a movie over and over? You know the outcome. you know it's going to be a tough part and even though you have seen the movie over and over you think for a moment you can change it? Well, maybe you haven't... but I can only relate it to that. No matter what, when the day begins, reality just slaps you in the face and you are going through the emotions all over again.
I Skyped in with Denny and Kayla and got to watch the room for a while before I felt comfortable enough for a shower. I usually put the microphone on mute and shut the camera off on my end and just keep the feed on. There was one night after the first round that I had lost it. Denny and I were sitting on the couch and I was explaining how hard it is to be on this end. Wondering what is going on in their room. I am left to wonder if he is busy with nurses, sleeping, or tending to Kayla. Always afraid to text or call because I would never want to pull him away from her or something important. But as a parent, I'm on the other side and feeling so helpless. I know she is in incredible hands and I know Anthony needs a parent to be attentive to his needs as well. They both need us... in incredibly different ways. So, we do what is best for our kids. There are personal sacrifices. But we just do what works best for them in the long run.
It was almost lunch time. I had bags filled with snacks, a green smoothie drink, protein drink and a package that had just come for Kayla as I was heading out. It was from her Girl Scout Troop. I knew there would be something in there that would make her smile, so I brought it. Anthony and I hopped out of the car and I practically had to beg him to carry one of the bags in for me. He moaned and groaned, but did it anyway. We headed in through the heavy rotating door in the Chili Care Center building and headed for the security desk. On the weekends any visitors (yes, that would be us) would have to check in there before proceeding. We got our bright orange stickers that cleared us and we headed for the elevators. Anthony happily pressed #2 and off we went. When the doors opened, he couldn't run fast enough until he stopped in the fish bowl. He has his own routine. He washes his hands, uses hand sanitizer and then heads straight for the automatic paper towel dispenser for some "paper" to draw on. This seems to hold him over for about 30 minutes before he starts to get a case of the wiggles. I sent a text to Denny to let him know we were in the Fishbowl. It was a good 25 minutes before he was free to tag me in. You can't be in a hurry when it comes to that place. So I bring a book. That is my new strategy to calm my nerves and it seemed to help today... a lot!
I walked down the hallway and headed into her room. Her nurse, Heather, was there greeting me with a warm and sincerely happy smile. She seemed happy for me to finally get to be in there. We chatted a lot about how I first knew something was wrong with Kayla. The steps that led us here. The details of telling her.. secret cries, waiting for surgery, not responding well to the news that our journey ended there. I wish so bad that I could thank Dr. Gupta now for the total resection. I mean, at the time all I could focus on was that he thought it was not benign. Wasn't it his job to get the whole thing out? Oh ignorance is bliss sometimes. I am actually glad that I didn't know then what I know now. I was protected from knowing all that I do now. When I look at that picture of him. That picture that Kayla made me take of the two of them right before surgery... It's haunting. His smile says one thing.. his eyes tell a completely different story. The shear concentration that was needed. The fact that he knew exactly what he was up against. I have mentioned it before... but it haunts me and I am so grateful. So grateful that he was so focused.
Kayla continued to sleep mostly which we welcomed. I can't imagine trying to get her to be awake through that if she didn't need to be. Who would want to try? She woke up when she needed to use the bathroom or if she felt sick. At one point we walked to the bathroom so she could go and when it was time to wash her hands she ended up getting sick in the sink. I remember looking at the Cisplatin and just saying... "I hate you". The nurse nodded. I don't hate the Cisplatin if it does it's job and the cancer never comes back. I do hate that it makes her feel this way. I hate that it could have horrific after effects. It's just not fair that there isn't a cure by now. It's not fair that you go through this and it's with hope... it's not a for sure cure. That is not fair.
Kayla climbed back into her bed and when she tried to talk to me she had trouble. I told her it was ok and that I can usually read her thoughts. It only took one try and I knew exactly what she was trying to say. "She is feeling better now after getting sick and that she loves me". I asked her if that was what she was trying to say and she smiled and nodded yes. I saw her breathe a sigh of relief because she didn't have to tell me. I took this moment that she was feeling "ok" and asked her if she wanted me to open her package. She nodded yes (of course!) Inside was the most beautiful quilt that the girls in kayla's troop had put together for her! We could see how much love and thought went into each square. I could tell Kayla loved it! Thank you girls... it's beautiful. (and now hanging on the wall in our living room here!)
After about 1 1/2 hours, Denny and Anthony had returned from a long lunch together. There is only so much time you can spend with him in that fishbowl before he becomes loony. I gathered up my bags and told her that I wished so bad that I could stay longer. Unfortunately, helping hands didn't come through for us... again. I could hear Anthony screaming and laughing from down the hall and my pace increased. As soon as the fishbowl was in sight, I could see a tinge of relief in Denny's face. So, off we went. I got back to the room and popped in a movie for Anthony. I knew I needed a few moments (or hours) to just be a mess. And I was. Who wouldn't be? When that kind of reality hits, sometimes it hurts. Anthony climbed into my lap and gave me a hug asking, "Mom, are you crying because you love me SOOOO much?" I said, "Yes. That is exactly why. I love you sooooo much". He just hugged me harder.
Happy Mother's Day to all the mom's out there. Kayla was actually born on Mother's Day. Last year was spent sharing it for the second time. I remember telling Denny that I wanted the day to be focused on Kayla. I would have other years to celebrate Mother's Day alone. With Denny's birthday and Kayla's only one day apart there will be years we share the love... and that is fine by me. We just thought this year would be different. I promise next time the date is combined that we will REALLY celebrate... We will have so much to be happy about that year! We have so much to be happy about each and every day really. Happy Mother's Day!