The fact that I, his safe person, was giving him shots really undermined his trust in the world. He had always had a high pain threshold and was fairly tolerant of irritating or uncomfortable procedures, but me sticking him with needles (along with all of the other stuff he was dealing with) pushed him over the edge into a place where he couldn't tolerate anything.
Remember the story back at the end of Chapter Six where Dr. P put some stitches in Sam's scalp without the benefit of anesthetic and he just sat still through it? There was no way he could do that after we began doing shots at "home". He started going wild at the thought of pokes. At one point, not terribly far in the future from these posts, it took 5 people to hold him down while his port was being accessed. Holding him down to poke him felt like the worst kind of torture and did nothing to help him overcome his fears.
He is amazing in his ability to adapt and cope. He spent some time terrified. We worked on it. We asked for help. I advocated and our healthcare partners were receptive, flexible, and so helpful. Currently he gets his port accessed monthly to flush it and make sure it's still functioning properly. He holds himself still through it and does very well. Part of his coping ability is just that he's older and has more experience with it, but it's also that he is a tough kiddo.
It's hard to watch a kiddo get toughened up by the world. It's also amazing how these little people (not just him... all of the kids I had the privilege of knowing though this process) rise to cope with and shine through incredibly tough circumstances.
I learned more about resilience and strength from the kids (and some, though not all, of their families) than I have ever learned from an adult patient. Little kids are amazing in that they live in the now. They live to play. They can feel like crap, have horrible things happen to them, and have zero control over their bodies or lives and yet... the minute they start feeling even the tiniest bit better they get up and play. They don't dwell. They don't waste time feeling sorry for themselves or scared for the future. They just live. It's a beautiful thing to witness and try to emulate.
Living, as we did, for so many months in and around a children's hospital offered many opportunities to learn about living in the moment and being thankful for what IS, rather than focusing on what isn't and can't or won't be.
May 10, 2012
8:55am
I tried to post yesterday that we were back at the Ronald McDonald house and that Sam was tolerating his tube feeding well, but my phone was being weird and wouldn't let me.
So-- we were back at RMH last night! Sam's in radiation now. He's (mostly) tolerating his feeds well. The schedule is wacko. We change from tube feeding to water at 2am and then turn off the water at 6am so that he can have an empty tummy for being sedated for radiation. He's gaggy. His hair is starting to fall out and make the bed pillows look like they were slept on by a shedding, sandy blonde, Persian cat. His surgical incisions, while healing well, have started to look red and angry from the radiation. He doesn't want to talk much. Partly because his throat hurts I think, but mostly because he's bummed out.
Despite all of this, he still giggled like crazy when we wrestled on the bed last night, me trying to eat his delicious toes like corn on the cob and him trying to keep his feet out of reach. We all (Sam, Grammy, and I) played a modified game of "Bonopoly" (aka Monopoly). Sam got tired and reclined on the pillows like a tiny pasha, "Mommy, you roll for me. Grammy can move my piece." He's such a fabulous child. Sometimes I get so caught up in him being sick that I forget to play. I love when he reminds me how important play is. For all of us.
10:10pm
I cannot express in words how amazing our friends and family (bio and chosen) are. Today is a tired, sick, sad day. We're muddling through it though and the bright spot in this whole business is being witness to the incredible community building that is happening around us. I feel so fortunate in the people we are surrounded by. You have big hearts, my friends. I feel privileged to know you.
May 11, 2012
2:38pm
Another installment in the "people are interesting" story file: Dad wearing "I'm only here for the beer" t-shirt to the oncology clinic with his bald, very ill looking, 9-ish year old son.
2:44pm
I want one that says, "I'm only here for the tube feeding".
9:52pm
Loooong day. Left "home" (aka the Ron McDon) at 0730, radiation at 0800. Followed by the crankiest wake up this week and a clinic appointment at 1000 where they checked labs and pronounced Sam pancytopenic. Awesome. Also checked blood cultures due to a low grade temp he's been running for several days, gave him a unit of blood and 300mls of saline, and tweaked his tube feeding due to inability to tolerate the stuff they sent us for home use (4 cases arrived in the mail today!) Someone missed actual nap time and, refusing the hospital bed, took a small sleep in the wagon while being transfused. So cute.
Got "home" at 1830. At home: Flushed the feeding tube (with drama and gagging). Gave an injection of the white blood cell booster (with drama and a tiny bit of screaming). Took a shower together and tried to wash some of the falling-out hair away (with minimal drama and some actual relaxation in the warm spray-- this kid loves water!) Jammies, stories, tooth brushing (with drama and spitting). Oh so tired with barking dogs where my feet used to be. Silver lining? He feels so much better than he did last night and now we have two days off with no treatments. (Psst... Monday's treatment will be #15, you know what that means? Halfway point!)
Now he's sleeping, snuggled next to me while I type. Sweet little boy, I love you so.
10:02pm
Yesterday, falling asleep with a horse on his head.10:04pm
Naptime in his security zone-- aka the red wagon.
10:28pm
Funny Sam moment of the day: last night Sam felt really bad. Trying to cheer him up, I started taking little videos of him with my phone (something he usually loves). "Take a video of my butt, mom." he said and giggled. What do you do when your fairly depressed, very ill, small child with brain cancer asks you to take a video of his butt? You take the dang video. The entire video is him, lying on his side, wearing his red sweat pants with his heiney toward the camera, not moving. Tonight he wanted Grammy and me to watch it with him again and, as it was loading, he rubbed his hands together, grinned, and said, "This is going to be AWESOME!"
May 13, 2012
8:03am
Happy Mother's Day to my mom and all of the other women who have mothered me; I hope to someday have half the grace, strength, wisdom, and compassion I see in you. An especially happy Mother's Day to my sweet boy. The opportunity to be your mama has been the most incredible journey I have ever undertaken. Thank you for choosing me.
Next, Chapter Nineteen, Mama Bear
No comments:
Post a Comment
I love comments, questions, and discussion.
I usually publish comments after reading them. If you'd prefer to send me a private message in this forum, just write "private" at the beginning of your comment and I will read it, but not publish it.
You will be asked to enter a word verification, this is just to help eliminate spam.
Thank you for commenting!