Friday, September 4, 2009

Orangish-Red Alert

This is what happens when you have a child with cancer. Life is always a bit on tilt. I often find myself incessantly wondering, “Is it safe to do this? Is it ok to do that? Does she look alright? Is she feeling warm? Oh no, are those the sniffles coming on?” Any time I heard of someone sick in her classroom, I experienced this visceral kind of panic and deep-seated ‘uh-oh’ kind of dread.

It is almost impossible to live in ‘the moment’ under these conditions, try as I may. I couldn’t help myself from wondering, worrying and being on alert. I suppose this is anticipation and preparing for the worst but the trouble is that it sometimes inhibited me from enjoying the moment so worried was I. It was hard to play and feel sincere about it. It was hard to feel present to Reo and Rianna when I was always looking over my shoulder at Aria waiting for some kind of change to happen. I find this aspect particularly exhausting and I haven’t figured out a way to improve my coping. I’m simply taking note of how I feel while it’s happening and then I go from there. It is worth mentioning that this kind of worry and dread isn’t fictitious. There are reasons for it but it is so important to let Life take its course and to follow along in a complete sort of surrender. It isn’t a ‘giving up’ kind of thing at all either, but more like a true surrender to a process for which you have no control. This takes a great deal of trust and I am learning that when I surrender in Trust I feel better. (September 2009)

October 3, 2008
Subject: We’re on Orangish-Red Alert

Aria hasn't fully recovered from her cold that put me on red alert last week for which she stayed home from school all 3 days. She was able to attend school this week because although she had a cough and a runny nose, she felt fine. That is, until Thursday. We were out running errands and she said, "Mama, I feel really hot." I took a look at her in my rear-view mirror and her cheeks were rosy flushed and she looked like she was sweating a little. I pulled over realizing that I was in the middle of downtown and didn't have a thermometer with me to check her temperature. She felt plenty hot but she was wearing a fleece outfit and the backseat where she was sitting felt warm and a little stifling. I took her fleece top off, which left her with an undershirt and opened the windows and sat for a moment or 2 wondering what to do. My thoughts were clamoring for attention. "Should I go home and check her temperature? Shoot! I still have to go to the grocery store. Should I go to the grocery store and buy a new thermometer? Darn it! Either way, I'm a good 20 minutes out." That felt too long. I decided to call the clinic since we were only 5 minutes away and see if they could check her temperature. I was told, "Absolutely! Come on in." What a relief. So Aria, Rianna and I raced up to the clinic and had her temperature taken. 98.7. “ Phew! Aria wanted to go eat in the hospital cafeteria before we went grocery shopping so that's what we did. She was chipper and hungry. I was relieved but edgy. I don't know, something didn't feel right. I tried to put it out of my mind, but I couldn't completely. When things like this happen, I realize that the dread and the worry are always there and very much heightened under these kinds of circumstances. We had a wonderful day and although her cold symptoms remained, she was fine.

This morning was a different story. She woke up telling me that she felt yucky. "Uh-Oh!" This is never a good thing. I asked her if she felt yucky because she was hungry, which for the past few months is what that has meant. "No Mama, I just feel yucky." Shit! I was sunken. This was a drag and the worry wheels started to spin. She thought she was going to throw-up but she didn't. Then she complained that she "just didn't feel well." I was thinking about yesterday and wondering if her body was brewing something new. A sinking feeling started happening within me. I took her temperature and that was fine but she didn't look right and truly didn't look like she felt herself. We had to take Reo to school and Aria begged me to let her wear her pajamas in the car, which I did. I had implemented our old school rule, which is that on school days the kids are not allowed to watch the television. Aria was asking all kinds of questions about how we were going to spend our day together.
"Mom, what are we gonna do when we get home?" She was sounding rather energized and happy.
"Let's do some painting." I suggested enthusiastically.
"Idon'twanna." slurred from her mouth as if one droopy word.
"Let's play a game." I countered with equal bubbly delight.
She sharply replied, "NO!"
For some reason when I heard this, the image of a carrot top being clearly chopped off came to mind. I started to laugh.
"Mama.." she began in a sort of whimpery pleading kind of tone, "I just don't feel well and I want to take it easy and watch some commercials."
This is her word for cartoons. I conceded and told her we could watch one hour of cartoons. She didn't perk up per se, but I could tell that she was glad. We watched a few cartoons and read some books and played with toys. She had some snack-type food and some ice cream but did not have her normal level of exuberance. By 12 30 or so, she was ready for a nap. I put her in the big bed and Rianna in her crib. Aria, it seemed, fell asleep almost immediately. Rianna, on the other hand, played in her crib for a good 20 minutes before she finally dozed off. They both woke up around 2 pm, which was just in time to get ready to pick up Reo. When I went to Aria on the big bed and sat her up to have a drink of water, I noticed on the pillow was a big round sweat mark. She wasn't sweaty, or clammy nor was she hot but I took her temperature anyway, which remained normal. She felt punky the rest of the day.

By the time Doc got home around 6 o'clock, she was much warmer and began to writhe a little on sofa in the living room. We had been reading books for 15 minutes before Doc got home to create a calm environment, but the moment she saw Doc I think she felt free to let it all hang out. "I feel yucky!" she moaned. Doc took her temperature and it was 100.3, which is awfully close to that 100.4 temperature which means a trip to the ER. He was confident, however, that she was over-heated due to her fleece pajamas and the fact that she felt sick to her stomach. He decided to go ahead and give her evening medication that includes the 'don't fro up' medicine. He was giving her the meds an hour before her 'normal' time. I mention this because that thought never entered my mind. I hate to admit it, but there it is. I realize that I'm so stuck on the routine of evening meds at 7pm and morning meds at 7am with very little variation in between that I don't have the same level of confidence that he has. It never occurred to me that her feeling sick to her stomach would elevate her temperature. It never occurred to me that it would ok to go ahead and give her medicine early. It makes perfect sense, but that's not at all where I was in my thoughts. I had spent the day with her feeling up and down, watching her like a hawk, waiting for the bomb to drop. When her temperature was elevated my immediate thought was, "There it is! There's the bug that's been brewing for the past few days!" Doc wasn't willing to go there yet and I was so grateful for his knowledge and expertise. Once again, I saw his medical training prove to me that he can see a much bigger picture with many more connections than I could ever hope to imagine. I'm not at all trying to put myself down. This is simple fact. He is a medical doctor and knows inside and out how the body functions. I'm in awe of him.

Doc took her pajamas off and put her on the big bed under the covers with a cold compress on her forehead. He reassured me that if she has a true fever, in 15 minutes time, this cold compress would make no difference whatsoever. We proceeded to 'busy' ourselves. We exchanged a look that said, "I don't want to go to the ER on a Friday night!!" Finally, Doc actually voiced that and followed it with, "But, we would we go, if we had to." Yes indeed we would. But man, the ER on a Friday night with 3 kids waiting around in a hospital room for hours sounded really bleak! You might be thinking, "Well, Doc could take her and Julia could stay home with the other kids." Yes, this is true, but that's not how we've been working it. Aria gains a great deal of strength being surrounded by her whole family. Reo gains a great deal of confidence knowing exactly what's going on with his sister. It is so important to us to stick together. 5 minutes had gone by. I was puttering around aware that I was sort of pacing. I decided to go ahead and check and re-pack the hospital bag. It made me feel prepared. 7 minutes passed. I couldn't stand it. I went upstairs and peaked in at Aria. She was so cute in that big bed with a moistened pink bandana on her forehead.
"Hey, Mama, look at me! I look like Dorothy!"
I burst out laughing. She is such a hoot. We talked for a few minutes about why Dorothy had to have a compress on her head and how that differed from Aria's. The wheels were just turning and turning in that little girl's head. I know Doc wanted to wait 15 minutes, but 10 minutes had gone by and I couldn't wait any longer so I went ahead and took her temperature. Ah Shit! 100.7! "Now what do I do?" Do I tell Doc? I hadn't waited the full 15 minutes. This was such a mommy moment where I just couldn't stand it! I decided to putter some more and not tell Doc. I know..I know... I just couldn't deal with him giving me a hard time on top of everything else. That, and I just didn't want it to be true! Finally, the 15 minutes was up and Doc comes upstairs to check her temperature. I'm in the Fairy room folding laundry. I wait a minute and then go into our bedroom just as the thermometer was beeping. It was 99.3. I didn't believe it. "Doc, she didn't have the thermometer in her mouth right. It was sticking straight up. Would you take it again to make sure?" He smiled so patiently and agreed. I sat with her this time. 99.4! I know I must seem crazy to you but I spent the entire day with this child riding these weird waves. Is she sick? Is she ok? Is she getting better? Is she getting worse? Am I coming or am I going?

I felt so much relief! I didn't feel quite out of the woods but felt like we at least didn't have to spend Friday night in the ER. I read books to the kids and everyone was in bed by 7:45pm. Aria came into the big bed in the middle of night. It was 1 30 am when I couldn't keep my hands off her face checking her temperature. One side felt hot and the other felt cool. Her body felt warm but not really warm. Man, this is some edgy stuff! I didn't fall back to sleep for some time. She was sleeping peacefully and didn't have that radiating heat of a fever so I began to relax and finally fell back to sleep. We checked her temperature first thing this morning and it was normal. She still doesn't feel well and we are watching her very closely.

I'm not at all opposed to going to the ER or the hospital if we have to. What's so hard is not knowing and feeling like I'm teetering on a fence. I'd just like to be able to fall to one side or the other and relax there for a little while. This is where Doc is so good for me. His confidence is extremely reassuring. No parent relaxes when their kids are sick. Aria getting sick adds some additional layers to that stress and I'm still learning how best to cope with those new layers. Even though we are fast approaching the 9 month mark, it still feels new a lot of the time. That, and I just never want to take anything for granted.

I'm going to go ahead and send this off to you and ask that you keep Aria especially close. She's still very much on the edge. Right now she is napping in the big bed. Her temperature is slightly elevated but not at the critical point. We are keeping a close eye, trying to relax and let things be as they are. I'll keep you posted as always..~j

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