Once again it is scan day. We are at Dallas instead of New York which is nice for a couple of reasons. One, being home is way better than being across the country. Two, there is apocalyptic snow storm heading right for the hospital and I’m not about being stuck in all that. Though, to be honest, I would’ve loved to be able to suit KA up and throw her in a fresh snow drift. Arms flailing wildly as she leaves a perfect KA cookie shape in the snow. I know it doesn’t work that way, but dreams you guys…dreams.
We didn’t get to get scan in NY because she popped positive for flu A. She never did get any symptoms so it was kinda like flu F. Not that I wanted her to get sick but there was a big to do and we got sent home in cancer germ shame for nothing. Of course I didn’t want to get anyone sick so I’m not really upset about that, but if you’ve ever walked by a cancer kid while your kid coughs or sneezes its like…well I don’t know how to describe it, but its bad m’kay?
She did get the vaccine which is really all that matters at this point. We can scan at home, no big deal. It just gives me a chance to have a chatty chat with Dr. Watt. I swear I love that woman in a totally doctor/crazy mom of patient appropriate way. She is truly an amazing woman. We talked about taking her port out if her scans are good this time. Its crazy how superstitious not only she and the other doctors are, but myself as well. I will never ring a bell, or throw a party. Not because I don’t want to celebrate those victories but because what if I’m tempting fate? I know it sounds so silly, but its a real thing. I know in my heart that if she does relapse that it’ll be my fault for celebrating before I should have. I’m convinced there is a certain amount of PTSD that goes along with all of this, but more on that another day.
I’m really nervous this scan set. Life has been so normal for the Poots. She’s in school, swim classes, birthday parties, and afternoons at the park. Her hair is growing back and she is so damn proud of it. She love to put little bows and clips in her hair and practically shines when someone gushes over her hair. She keeps telling me that she wants in long like mine to braid it every day. I promised to braid it anytime she asked. That might backfire when she’s 31 and wants me too, but I figure I’ll be 71 by then and how can you seriously ask a 71 year old woman to braid your hair?!?!
Speaking of old ladies… Nessa is visiting this week. Not that she’s an old lady but she does crochet…or knit…crap I can never remember which! She gets so mad at me too, it’s kinda cute. I digress… Anyways, she has been making me a blanket whiles she’s been here and it’s looking awesome. Blues, yellows, and cream. What is funny though, is everywhere we go, she settles in and starts crocheting (?) and I’m right beside her eating sunflower seeds and we are just jabbering like little old ladies. It’s got to be quite the sight. It’s nice to have her here with us and see the how our lives really are. One of the things I’m so glad she has seen is how truly loved KA is here. I brag about her doctors, nurses, and everyone here at the hospital…but for Nessa to really see what I mean is amazing. These people here really love her so much. She’s like a little celebrity. One of her nurses waited an hour and a half after her shift, fourth in a row I might add, to come see her in radiology (shout out Chelsea). One of the reasons is because of Katie-Anne herself of course. But if I’m completely honest, I’d like to think I have a part in it too. I think that a lot of parents get wrapped up in everything that’s going on that they forget about the people that are there taking care of them and their children. They are not our punching bags. They are human and they have feelings. When a parent is difficult in general to deal with, it takes its toll. In no way am I saying to not advocate for your child or stand up for your rights, but I think we all know those people that are just difficult in general and usually bring a negative environment wherever they go. I have seen parents screaming at nurses to get into their children’s room while they facebooked their child’s code blue. I have seen those same parent berate a nurse because she was 10 minutes late getting Tylenol to a room. I get so very angry because they have no idea the pressure these amazing people are under. I get it, not every nurse is an angel. Though if you are treating them with respect and kindness, you’ll get it returned generally. I don’t even know what I’m trying to say. It just angers me to see people act this way.
This month has seen a lot of sad news for my cancer family. A friend of mine lost her son this week. Another family is struggling to find an answer. Kids relapsing, losing their battles, and yet… some finding joy and laughter again after so long without it. I almost forget some days that KA is still in danger on this beast called neuroblastoma…almost. It’s never far from my mind, as much as I’d like to forget. Maybe one day I’ll forget her tears rolling down her face as the gas mask goes on as she’s being sedated. Maybe one day I’ll forget watching her struggle to keep up with the other kids running. Maybe one day I’ll forget the hours of sitting like an old lady waiting to get called back to recovery.
One day, maybe, I’ll forget what cancer has done to our lives as I sit down and braid my 31 year old daughter’s hair. I wont care that I’m 71, because I promised to always braid her hair whenever she asks.. and that a promise I intent to keep, no matter when cancer happens.