If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell. ~Lance Armstrong
Saturday, July 18, 2009
Breaking Down
I think it's getting harder to keep my sanity through all this. The irony is that Amanda had her best week yet. That's what makes it so hard. I get a taste of normalcy, which I long for, only to be thrown back into watching my kid suffer. It seems almost cruel. Yesterday's chemo proved to be brutal on her. She came home so sick and miserable. She had severe pain in her hips and legs all day and night long. It's the type of pain that nothing but heavy, addictive pain drugs control. I suspect it's bone marrow depletion, but I'll have to ask the doctor because it's not a typical side-effect that I expected. We struggled for hours to get on top of the pain because the only pain medication she can take causes nausea/vomiting. This is also the side effect of the current chemo she is on. The anti-nausea medication doesn't seem to stand much of a chance with both of these drugs. After hours of whimpering in pain, she finally threw up. I physically held her up in the hallway while she was vomiting, only to abandon her myself to gag over the same bowl. I felt awful as a mother. I'm getting very tired of cancer and hyperemesis gravadium. I unfortunately had my PICC line pulled this week due to complications from it. I'm struggling with fluid intake, which makes me more nauseated. Yesterday was unfortunately a bad nausea day for both of us. Some days being sick together comforts her. But most of them are overwhelming for me. Earlier this week I told Amanda that I was getting my PICC line out, she sobbed and said that now she's the only one that is different. It was so sad to see her reaction. She also asked me how long she will have treatments. I have been dreading this question. I was honest and said that it would be the end of 2011. She sobbed again. Despite these setbacks, she is learning to be more resilient. I think she's doing better with resiliency than I am. As of right now she's feeling better and happily acting more like herself. She doesn't complain about yesterday and seems determined to enjoy the day despite whatever setbacks she had this week. Fortunately, this is what keeps me going. Every day is new. I have to remind myself to not let yesterday's despair dictate new days that have the potential to improve my hope. The only exception to this is that we are planning to buy a minivan this week. No amount of encouragement or counseling is going to make the dreaded minivan a welcome part of my existence :)
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Normalcy is something that i longed for since September of last year. now that it is returning it leaves me feeling somewhat anxious. I tried to step in your room in the clinic last week but the door was shut and I didn't want to interrupt. I am glad Amanda liked the hat. Kristen has one and it is my favorite. We have a neighbor that lives about 5 houses away and he also has ALL. Tommy was diagnosed in December and has finally hit maintenance. She has a cute blog and on the side bar tommy has a friend named Jake that also has ALL. You should check out their blogs as I think they are going through the some of the same stuff as you. The link is prayfortommy.blogspot.com. I noticed Tommy was able to make a wish from make a wish foundation, have you thought about looking into that for Amanda. I was thinking that it might give her something to look forward to. I hopw things improve for both you and Amanda SOON!
ReplyDeleteMary Ann,
ReplyDeleteI'm sorry you and Amanda had such a hard day yesterday, especially after having so many good days. Hang in there! I know you can do it. As for the van, it too shall pass (you've only got 10 years or so). The other day I picked up Dayan and his friends from Lagoon. I had to turn the air conditioner to full blast to try and neutralize the body odor of 5 teenage boys. I was thinking of you and feeling jealous that your van won't have the funky kid smell (yet).
Please call if you need anything! Love ya.