I haven't written about last month's appointment partly because this past month was my busiest of the whole year and partly because I didn't know what to say without sounding like I was complaining. I don't want to sound like I'm whining on this blog. I want to be thankful and look at things from a perspective of how good things are compared to how they could be. Cancer is just bad and that's all there is to it. I realized that I don't give many details about what the appointments are like. I have wrestled with whether or not to describe these things on this blog. I know if I don't write about them, we will forget what it was like. Will we want to forget? Or will it one day be a testament of what all God brought us through and how tough Hannah is? I don't know the answers to these questions. So I've decided to write about the details of two typical appointments (last month's and today's). I guess we can always not read it later if we don't want to.
Last month was Hannah's yucky appointment where she had to be sedated and given chemo into her spinal fluid and also through IV. She's been through all of this enough to know what is going to happen at these appointments from the moment we walk into the procedure room. We are usually at the hospital for 3-4 hours - waiting in the waiting room, getting blood work results from the lab, having her physical exam with the doctors and getting prepped for the sedation. I think the waiting for the inevitable is hard for her. If we could get there and get it over with, it might be better on her. As it gets closer to the time of the sedation, more people crowd into the room and she starts to get upset. There are usually two nurses, the anesthesiologist, her doctor, a nurse practitioner and a child-life specialist (plus Eric and me) in a tiny room. Hannah doesn't like all of the people in there - I think because she knows what's coming. She especially doesn't like the feeling of the sedation medicine. One of the nurses told us that it feels like your head is getting squeezed. She cries when she gets this medicine. She knows she can't get away and that no matter how many times she says no - it's still going to happen. All she could do was hide her face under my arm and cry. This chemo made her feel sick on the way home and she rode part of the way holding her throw-up bucket. Then she usually has an upset stomach over the weekend.
She got a special treat at her appointment today. Her sweet buddy, Carly (one of the volunteers from the Lighthouse retreat this summer), met us at the hospital and stayed with us for the whole appointment. This made Hannah's day! Carly bought her cowgirl boots for Christmas - the sweetest gift! Hannah was thrilled!
Hannah did well until it was time to access her port. She fights it and I don't know what to do to make it better for her. We've tried giving her choices to help her feel empowered ("Do you want to sit in Mama's or Daddy's lap?") We try to give her the choice of being still so that we won't have to hold her down. We try to get her to think that it will be over in just a few minutes. We've tried to let her watch. We have tried turning her head so that she can't watch. Nothing helps. Today it took me probably a full five minutes to get her arm out of her sleeve. Doesn't sound like a hard thing, does it? Try getting one arm out of a long sleeve dress when the kid is fighting you, moving her arm and body around so much, making it nearly impossible. At any other time I would consider this blatant disobedience and she would be disciplined. But there's no way that I'm going to discipline her at a time like that. Is that the right thing to do? Or would she feel more secure with more structure? I don't know what I'm doing with the special emotional needs of a chronically ill child. Where is the how-to book on all of this? Once I finally got her sleeve out, it was time for her port area to be cleaned and accessed. During this time, it would be best for the patient to be very still because if anything touches the area on her chest that has been cleaned, the nurse has to start over. But at this point she is kicking and screaming. I've learned to hold her legs between my two legs keeping her from kicking and also freeing up my arms to hold her upper body. And once again the mother who is supposed to protect her child is holding her down, letting people hurt her. After her IV she felt much better. She seems to recover quickly and she's usually happy again after a short while. I guess that's the great part about her being four years old. But I worry - what will all of this do to her emotionally in the long run?
4 comments:
I would just like to say that I give you permission to have EVERY. SINGLE. ONE. OF. THOSE. THOUGHTS. I am in your corner 100% and one of your biggest fans. You're doing the very best you can with the situation you're in and with what you've come to learn up to this point in motherhood. Hannah will most certainly understand all of your decisions one day. You hang in there with your head held high, sister! I am so very proud of you!
I have had to hold a child down while they were getting shots, so I understand what it is like, to an extent. Not FUN! I can only imagine what you are going through and the gut-wrenching decisions and choices you are having to make. I think YOU should write a book on disciplining a child that is chronically ill. I think that your insight would be helpful to other parents going through the same thing. My prayers are with you and it is tough! It is hard! It is not fun! But our prayer is that it will all be worth it and she will be cured!!! And she will be over this soon, real soon. You know, if it were you or I, we would hate it too. She just acts out because she wants to fight back. She doesn't understand the full complete reason why is is having to go through all of this. We would have times, too, where we would want to fight and yell and scream, if it would help.... Wouldn't we??
It will be a blip on the radar one day. You are doing this out of love for your child. She knows that. If she doesn't, she will.
I think about you guys often. You're still my super-hero!
Hope you all are doing well. Hannah, we got your letter. Thanks, so much. Will be intouch, Chad the Deputy
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