Tomorrow is monthly chemo day. She gets Vincristin through her port. She will also get her monthly antibiotic infusion which keeps her safe from who knows what germs. We have seen a lot of the hospital lately, but she is definitely better. She will get her bloodwork/counts done while she is there. This provides me with a bit of reassurance that everything is ok. I am worrying way more than I thought I ever would. I can't help it and I can't change it so I guess I have to learn to live with it. It hits me a lot when I am driving for some reason...and have time to think. So the clinic visit tomorrow is a good thing. She will also go back on five days of steroids starting tomorrow. I hope she handles them well.
I can't remember if I mentioned this on here, but Ally had been sleeping a lot. Lots of hours at night (extra) and then pretty much whenever she was riding in the car. Also whenever she sat down to watch TV. For instance, it could be 10:30 in the morning, but she would fall asleep. This combined with the virus really added to my worry. Then the virus left, but she still kept doing the sleepy thing. After reading her friend Bonnie's blog, I started to realize that it could be from the radiation. Jerad remembered the radiation docs mentioning delayed onset tiredness. And Bonnie's Mom mentioned that she was sleeping a bunch. (and had done radiation just before Ally) I asked Dr B and he said.....yes it is true. About 6-8 weeks after the cranial radiation, the kids get this delayed effect of sleeping. The timing is right on and I think this has happened to Ally.
I say this now, but it does seem to be wearing off a bit. I drove a full 30 minutes with her today, and she did not fall asleep. She has also seemed extra quiet to me lately, but I am hoping that this will wear off too. My mind is thinking...what the heck did that radiation do that causes this tiredness now? Are her cells finally dying off or being recreated or what? I will probably never know.
I will update more after her dr visit tomorrow. One more very HUGE thing though: Ally's hair is coming back. Her eyebrows too. It is amazing to see and I swear I can tell a difference each and every day. I rub her little head all the time just like I did to my babies.
If my prayers are answered, I will never ever again get to rub a perfectly bald head. I pray that will be the case.
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When Atticus's hair grew back I could tell how much it was growing daily. Everyone thought I was nuts, so I'm glad to see someone else say the same.
ReplyDeleteI have Ally in my thoughts. I'm glad to hear she's turning the corner on the virus and sleepiness.
Wish I could rub that head!! Love n hugs to all!
ReplyDeletethe car always gets me thinking too, probably since it's one of the few times we sit and have relative quiet all day! Glad to hear she's doing better and getting her hair back. Enjoy the day!
ReplyDeleteJanel,
ReplyDeleteThanks so much for keeping all of us updated on Ally's progress. Not a day goes by that someone will ask me, "How is your friend's daughter doing?', my mom, sister, golfing friends. I have asked everyone to keep you all in their thoughts and prayers. Glad to hear that her strenght and hair are returning. Hugs
M
I read your blog often and pray for your family. Stay Brave! My grandson Colin (2 1/2), has also started his maintenance treatments and his hair is coming in. I rub his head often and tell him his hair will shine! Stay Strong, I'll keep you in my prayers. Lots of Hugs
ReplyDeleteIs Ally's hair coming back the same color and texture? Lauryn told me that she read that after chemo, hair can grow back different colors and textures than it was originally. Thought that was quite interesting. Glad to hear that she's feeling better. Tell her if it makes her feel any better, I also fall asleep everytime I sit in a car (unless driving, of course), as well as when I try to watch a movie on TV. I think that's mom exhaustion, or old age, or a combination of both, but I can relate. LOL
ReplyDelete