Good week so far

We started into the hospital early Monday morning, hoping that counts would be high enough for her to get her chemo. If so, she would have a procedure to put chemo into her spinal fluid and take a sample of her bone marrow to make sure she is still in remission. This meant she had not eaten in many hours which is always very tough for her, especially since I am a food source and I am right there with her. Anyway, her counts were not quite there, but once again our oncologist was willing to let us start since they were very close and she was clearly recovering as she had come up alot since Friday. So we got to have her procedure, and it all went well (except for a longer than expected wait) and we were home by early afternoon. This meant that we also got IV chemo at the clinic and were given the go-ahead to start her steroid week. So she had her first dose of steroids Monday afternoon and they will continue through Saturday morning.

Also, Monday evening our doctor called to say that the slide prepared with her bone marrow looked normal and that he would give us more detailed results once they are in, but that he expected everything to be fine based on what he saw. I will post again when I get the full report, which may be another week to get the cyto-genetic test results. So we are very happy to hear that he believes she is still in remission!

So far, steroid week has been better than last time. She is still waking up for a 2-3 hour playdate around 3:30 am, but she is still getting about 8 hours a night plus taking naps. The middle of the night wake ups are not that bad as long as there is enough total sleep time throughout each 24 hour period. I just try to sleep when she does, which can be difficult, but it makes it much easier to deal with her slightly hyper behavior that comes with the steroids. This time her craving is Five Guys french fries, so we go get a large order (a huge sack) at lunchtime every day and that lasts us through the middle of the night snack times and breakfast. Yes, she eats fries for breakfast! We just do what it takes to keep her satisfied on steroids.

I added a few Halloween pictures. Also, I want to remind everyone about the MileStones walk November 15th. It is really important to me, and if you are interested in participating, please let me know.

Thanks again for checking in on us!

Love to everyone,

Liz, Brandon, and Maddie-boo

Maddie was a little shy, but thrilled to see other kids all dressed up!

Maddie was a little shy, but thrilled to see other kids all dressed up!

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One thought on “Good week so far

  1. Glad to hear that everything went well with her procedure on Monday. I know what you mean when you said that they were running behind. They were still running behind today when Owen had his LP and BMA. Owen is also on steroids this week. I hope that Maddie does well on steroids. Don’t worry about her eating fries for breakfast, as long as it keeps her happy. Owen eats crazy things as well and we are just happy that he is eating. I hope that you continue to have a good week. Maddie looked adorable in the Halloween photos. Hope to see you all soon at the clinic.
    Mary and Owen Bandy

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