Saturday, January 14, 2012


I've been wanting to update for a while now but just have not found the energy. I really can't wait for this round to be over and to have Jaylie feeling better again. I am so tired mentally and physically of all this. Jaylie has thrown up quite a bit this week and it's so sad to see. She is amazing because right when she's done she seems fine and bounces back so well. If I were in her position I would be complaining all the time. She's pretty amazing. She had an appointment on Friday and needed blood and platelets. We were there all day and it was a long day. I didn't sleep well the night before and was so tired. Jaylie was excited to be there all day though, she really enjoys doing crafts there. I need to take some pictures of the craft room and all the fun stuff they have, it's pretty cool. Jaylie is always a busy body there:) She got her last dose of vincristine too, which is awesome! Hopefully she won't be so constipated when all this is over. That chemo really constipates the kids, I hate that. She had to get Tylenol and benedryll too as a precaution against a reaction to the blood or platelets. Jaylie never gets knocked out from medicine that is supposed to make you sleepy, not benedryll or even phenergan. She surprises the nurses and has pretty good energy most the time. Today was nice weather so we played outside and Jaylie rode her bike with Kips help (it doesn't have training wheels and we can't teach her when her counts are low because it's so dangerous) and she rode her scooter. I was really surprised at how well she can still ride her scooter. Her balance was good and she was totally fine. It seems like lots of the chemo kids and especially brain tumor kids have a hard time doing those types of things. Her counts are low and are still dropping so I was surprised she felt well enough to ride it too. She was flying on it getting way ahead of all of us. We kept telling her to stop and wait for us. It's great that she's feeling so well. Next week will probably be a different story.

We have started talking about her going to Kindergarten when her counts go up, she gets a little rest/break and she is done with certain appointments. I have mixed feelings about her going to school. She is excited and I'm sure she will do fine but I'm scared to death. I worry about her getting into the routine of it because she has never been before, I worry that just jumping right in will be too much for her as she is recovering still. I worry about her making friends when all the other kids already know each other. I worry about how she will be treated and her getting her feelings hurt. I worry about her getting tired easily. I worry about the germs at school. I worry that she will come home sad or frustrated or hurt. I worry about it so much that Kip and I have both said that maybe we should wait till First grade to put her back in. I talked with the child life specialist in depth about it and felt much better about it. I know it's where Jaylie is supposed to be and it's the normal thing to go to school. She said it will help her feel more normal. She said it really is so good for these kids to get back into school. She said they usually do great. She will come to the class and do a presentation for the kids about Jaylie and cancer and help them to understand and be a friend to her. It sounds like the presentations are really great. Hopefully I won't be too much of a wreck when she goes back. I feel like such an overprotective mom now and I was totally not one before all this. I wish I could just protect her from everything but I can't and I know that wouldn't be good for her. It's like the worry and anxiety of having your kid go to their first day of Kindergarten at the beginning of the year times one hundred. Hopefully I wont be so worried about it as it gets closer to her going back. I know she will be fine, she loves kids and having friends and she loved preschool. It will be sad to not have her home bound teacher Trudy come anymore though. She is so great.

Jaylie is looking forward to having all this over and so are we. She is excited not to have to take as many meds soon and is excited to have her hair grow back. When her counts go up again she won't have to take the medicine that she has to swish in her mouth for 20 seconds every morning and night. She hates it and we will all be glad that will be over. She is excited also for her hair to grow back. She has been getting jealous lately of Breklyns hair and watches me when I fix it and has been saying a lot that she is so excited to have hair again. All
through treatment she never mentioned wanting hair, she even said that was her favorite part of having cancer is not having hair and not having to get it fixed. Now that the end is in sight she is changing her mind. She has a powerful mind and can talk
herself into anything. I think that's one of the reasons she has done so well emotionally with all this. We are hoping her hair will grow back well. The radiation she received can cause it to be bald in some spots or thinner in spots but we are hoping that hers will grow fine and she won't have bald spots. I know all of these things are so minor but they are a concern still. The main thing we want is for her to stay cancer free. Her next MRI is coming up soon and I am already nervous. Good thing for prayer, hope and faith. Without that I would have been so lost through all of this. We have seen so many blessings in our lives over the last 8 months, it truly is remarkable. There is a God and He loves us!!
Thank you for the prayers, they mean more to us than you will ever know!


Getting her blood pressure and temp taken.

In the elevator on our way home. She always gets cold at the clinic and today she wanted my scarf to keep her warm and her slippers on instead of her flats. Cute girl!

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