Today was Brinley's monthly chemo treatment at the hospital, her blood tests came back decent, not amazing, but she's trucking along and that's all I need. This kid handles treatment like a champ. She's almost excited to go, bouncing off the walls giddy. Mainly because when she hears that we're going to the hospital, she figures it'll be a day of crafts, poke prizes and getting spoiled by the staff. She's well aware of the routine of pokes, chemo, questions, and physicals, but the prizes and crafts out shine all of those things. She sits well for her IVAD access, doesn't flinch or frail about, she just takes it on the chin and moves forward. I've said it many times before, I'm in awe of this little girl. She could seriously teach me a lesson or two in acceptance.
It's no surprise to anyone now that I hate hospital days. I loathe them. I try every morning to wake up and smile, prep Brinley with magic cream (numbing cream), grab my coffee,head out the door, and just keep positive...but I fail miserably. It starts on the drive in, my legs start to get jittery, almost numb and noodley, I'm happy to be sitting and driving because if I was standing I may fall. As I get closer to the hospital and feeling moves up my body. My stomach does flips and turns, my heart starts to race and I have to take deep breaths. I hate this routine. Then I feel this lump of sad in my throat, like I can't choke it down, try as a I may, it hits my eyes. I try to blink away some of the tears, try glancing off in another direction, because maybe if I see something on the side of the road, I will be distracted enough to forget how sad this drive makes me. It never works. A few tears manage to always find their way out. I wipe them away before the kids catch on. It's no surprise that the time we leave the hospital I want to lay down and sleep for the rest of the day. It kind of leaves you in a fog. Sometimes I find myself thinking that maybe front line treatment was easier to deal with because you don't forget that dreading feeling, you're completely aware that your life is anything but normal, you see weekly visits keep you "in check" with your reality. But once you move to maintenance, (and yes it's a HUGE lovely exciting deal) but you forget your position a little, the feelings of helplessness evade you for a month, and you kind of forget about it. Out of sight out of mind....but then you have to go back to that place, the sad/helpless/depressing/overwhelming place of pediatric oncology.
So that's what I'm feeling today, heavy right? There's sometimes when I can't turn my head off, I get so blogged down with my thoughts that I can't shut off. This has helped today. Next month Brin will have surgery again, I can only try and prepare myself for these feelings to be magnified a bit more.
Wow, that does sound heavy! All the old feelings come rushing back , the anticipation, the long walk down the hallways, the waiting for blood work, the waiting for the results of those tests, the what ifs, the unknown and uncertainties.!ALL necessary to go one step forward towards the end of this journey! Brinley seems to be such a fighter and sometimes she is so active and vibrant, that it is hard to believe she is still on chemo everyday.I think the hospital had become so familiar to her , that she has missed it for the past month. Even though her and your month has been very exciting with the trip to DisneyWorld!! we love you. Stay strong and keep positive!! Try to focus on on packing and your new venture!!
ReplyDeleteMy Eva has been in the maintenance phase for almost a year now, and that is exactly how I feel on those trips to the hospital. It's normal for her counts to be a little low, they keep them that way on purpose, if they start to dip too low they will lower the dosages or stop the treatment until the counts boost up again.
ReplyDeleteMy daughter loves the arts and crafts, and all the attention and presents too, but she still cries when they access her port. Brinley is really brave, almost every kid fights against having their port accessed!