Day: August 11, 2010

Exhaustion….

is having your 3 year old son come to bed at 1am only one short hour after you’ve gone to sleep and having him awake and thrashing around in bed when at 2am you hear your daughter barfing. Then to have your husband fully wake you with the knowledge that your daughter has a fever of 38.1F.

Any fever is treated as serious and severe and warrants an immediate trip to the ER at Children’s Hospital.

The magic number that earns you an immediate trip to the hospital is 38.5F and so we called in to the oncologist on call to see what they’d like us to do…seeing as she wasn’t far off. Just so you know, her normal temp hovers between 36.4 and 36.9. We have to take her temperature daily in the morning and in the evening because when your counts are low, you don’t typically present with normal symptoms of infection…you just get a fever!

So when we talked with the oncologist on call, they said to wait half an hour and take her temp again to see where it was going….At this point I was up and Jon was up, Geli was up and Siah was up….Geli was finishing packing her bag as we were certain that she was heading in for a 2+ week stint of an antibiotics run. When there is a bacterial infection that runs rampant, she gets put on general IV antibiotics for a few days while they culture for the exact strain of bacteria and once they figure that out, they give her the correct antibiotics and then they take her blood every day looking for a test to come back negative for the bacteria. Once they get the negative test, then it’s two weeks on the antibiotics and then she can come home……lovely, eh?

This is what we were preparing ourselves for at 2am on a Wednesday morning. Jon was getting a last minute snuggle in with Siah. Geli had a bag packed and was laying on the couch and I was frantically cleaning the kitchen…..all the while trying to figure out how I was going to “do” everything especially when there was no way that Siah was going to sleep anytime soon, and honestly neither was I. Although I could go and lay down, I seriously doubted that I’d be able to sleep until I heard an update from Jon.

Finally, the half hour was up and her temp had gone from 38.1 to a 38.4 and so Jon rang to let them know they were on their way and that the temp was creeping up and they headed in.

I brought Siah back upstairs to my room and put on a movie for him on my laptop. He watched Enchanted, while I lay there waiting for an update. In the early morning hours time seems to stand still, but Jon finally messaged me and really had no update other than they were there.

He kept messaging me with what little information that he had and the end result was that things looked kind sketchy because she had a fever while already being on antibiotics and who knows what that meant and yet her counts weren’t indicating a bacterial infection and they weren’t admitting her, but they wanted her to say until the Oncology Clinic could assess her and it didn’t open until 8am so they were gonna try to rest and hang around until then. Siah’s movie finished after 5am sometime and I convinced him to fall sleep.

I finally fell lightly asleep around 6ish and then Judah woke at 7:30am to eat. Siah woke up for good just after 8am and I’d not heard anything regarding Geli yet.

Jon finally messaged me that they were giving her a IV dose of a big antibiotic and sending her home thinking she was dealing with something viral and that she could recover just as well at home as at the hospital…. She does have to come in tomorrow morning for some follow up blood work and another dose of antibiotics.

It was nice to have them come home. We have no idea where she could have picked this virus up, but this does speak to her compromised immune system. We feel fine, but somewhere, somehow she’s picked up something. Fortunately, her counts are just on the high-ish side of low, enough so, that she can be at home. Were her counts lower, that would not be an option.

But, this is one of the reasons why we must be so careful right now….Her system is just so fragile.

She’s been sleeping on the couch since 10:30-ish about half an hour after they got home. Jon took Siah upstairs and convinced him to fall asleep with much wailing and tears, but in spite of his exhaustion….Jon couldn’t sleep. Sucks!

I’m surprised that it’s already 2pm….I’m hoping that the rest of the day flies by until the moment I can crawl into my bed and that there are no more hiccups and especially that Geli starts to feel better so SO soon!

Bald Is……..

It’s been about 3 weeks since we had our big head shaving party.

I’ve shaved my head 2 more times since then. I will most likely continue to shave my head until Geli’s hair grows back. This will probably be sometime in the new year. I will be completely honest and say that I’m not looking forward to going through the winter bald…..it’s gonna be some mighty bit cold….we’re probably gonna be running our heater a bit more than normal and I guess that as stupid as I feel I look in hats – I’m gonna be getting some.

I really didn’t think too much about shaving my head when we did it. I knew that the possibility was that Geli would be losing her hair at some point but I hadn’t given much more thought to it all except that I knew that when it happened, that I’d shave my head too.

I watched her hair slowly start to fall out hair by hair and then it started to come out in hand fulls. Every morning it seemed there was a bigger handful and her pony tails got thinner and thinner.

I don’t know exactly what she was thinking as she experienced her hair falling out, all I know is that I desperately wanted her to not feel weird or uncomfortable or goofy looking or odd or different or any of the other thoughts that might run through a teenage girls head regarding her hair or lack thereof. I am her mother and I think that Angelica is beautiful. I see the beauty in her face, in the sweet almond shape of her almost black colored eyes, and the high curve of her cheekbones. Her dimples are amazing and her smile is so sweet with such beautifully colored lips. She is beautiful.

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But…..her beauty goes so much further than that….she has a beautiful nature and spirit. She is lovely both on the inside and out.

Now even though we’d had conversations in the past about not being defined by how you look, but by who you are……talking about that and living it are two totally different things.

Here we are at a time in Geli’s life when looks could becoming more important. She’s heading into her teenage years and so often kids just want to fit in. There are so few who truly want to stand out and be “different”. Fortunately for us, Geli’s always kind of walked to the beat of her own drum….but this is taking it all to a whole new level.

You can’t hide bald. Well, you can get a wig…..which Geli has, and I’m just trying to get a good picture of her wearing it. (It’s been day after day of us being too busy, or her not feeling well or the weather being too hot……..do you have any idea how hot it is to wear a wig??? They even sell these little gel bands that you can wear under wigs to keep your head cooler on hotter days! Crazy!) But even with the wig on……you can’t just “do it” like you did your own hair. Especially if you wore your hair up in tight little ponytails mostly every day.

But, your other options are to wear a hat, or a scarf or…..to just wear your baldness out there…

I’ve chosen to just be bald. I want this whole “bald thing” to be as normal as it can possibly be. Or maybe I want the baldness to be a non factor or as much of a non-factor as it can possibly be.

Geli is completely comfortable in her scarves….she’s been wearing them forever and it feels “normal” for her to wear them. She’s also gone just bald too and has worn her wig as well. I’m hoping that the whole “hair” thing will just become a non-factor for our family. I can see us wearing hats, scarves, wigs, flower headbands, and…nothing and choosing to do it depending on our mood or our outfit….more like accessorizing, if you will.

I wore a blue wig out to the mall the other day.

It’s so interesting to be bald. You get so many looks but very few people just ask why? I feel so much more “normal” bald, and to put the blue wig on…I felt so conspicuous….which believe me….blue wig or bald….when you’re 5 foot 10 inches tall….either stands out in a fairly big way.

I can’t help but think about it as I go about our small community. I stand out. I’m not even trying to cover it up. I do wonder if people see beyond the bald head. Do they see me, the person? I know that even at my exercise class there are people who have not recognized me yet? They have not been able to see beyond the baldness. I wonder to whom I’ve done the same thing. What have I not been able to see beyond? All of this really makes you think.

But….if I can even if just in a small measure make this a tiny bit more “acceptable” because believe me…this is not normal – then all is good.

Now, it’s not all bad being bald.

We’ve discovered that there are some amazing perks to being bald.

Things like……

I can shower anytime day or night and it is so easy because there is no hair to wash or dye or style? It’s just in and out and done! AWESOME!

When I get up in the morning to get ready! Dressed, make up and DONE! Literally 10 mins or less! so SO AWESOME!

There is no more worrying about messing my hair up when I pull a shirt or sweater over my head…..the first two weeks were so funny as I’d stretch the necks of my shirts out really big to avoid messing up my hair….and then I’d realize that I had no hair to mess up…

I don’t have to carry bobby pins or elastics or clips around with me any more.

There is no hair for the baby to puke in or grab. (Which is then even more fabulous because then I don’t have to take a shower to deal with the baby puke in the hair)

I’m not trying to get my hot, sticky, sweaty hair off my neck in the summer heat.

I’m considerably cooler this summer.

I can wash my face in the evening and there is no hair to hold or pin back and no worries about getting soap or water in it.

I can put moisturizer on my face without needing to pin my hair back or worrying about getting cream in my hair…in fact, I just rub my moisturizer right into my scalp and whatever little hair there is…..can always use a little extra moisturizer, eh?

I only need one towel after a shower. I don’t need the second one for my hair. Cuts down on laundry, eh?

I’m sure there are tons more Positives about being bald…..or even just interesting facts…..

Are you bald? Have you been bald? Do you have anything interesting to add to this post? Leave a comment if you can think of any other positive or interesting things about being bald….