We also sat down at our Sunday morning breakfast and tried to plan out the summer....birthday parties, visiting family in PA, class reunions...just normal stuff but we had to get some dates on the calendar. However, as we were doing it we realized that we haven't truly been able to plan anything in such a long time. It almost goes against my grain to plan anything now. It is hard for me to bring myself to do it. I am still making excuses in my mind or counting on not being able to do something at the last minute. I just find it hard because somehow I think we will "jinx" things if we plan something. I guess I just have to get past that. It's hard to explain......but a few of you Mom's out there know where I am coming from.
Ally is doing really well with all her "at home" medications. It is a lot, but we have done ok. She just finished her fifth (and last for the month) day of steroids today. She is taking a new steroid (called prednisone) and it seems to be a whole lot easier on her than the decadron (dexamethasone) was. She has had some trouble sleeping and is definitely more hungry, but I haven't seen her go into that catatonic, uncommunicative state that she used to go into. I think this is a HUGE benefit for us, well hopefully she always tolerates it well. I hated seeing her on the steroid and always felt like she was sad. It was hard to see. She is taking her daily chemo (6-MP) and we usually wake her up at night to take it. We actually set an alarm. It is a hard drug to take because you are not allowed to have food for a three hour window around it....and, well, when your girl is on steroids this becomes almost impossible. And milk/dairy will really screw it up too. So we just wake her up at night and her stomach is empty. We may still have to figure that one out....
Thanks for praying for our girl. It is quite scary to let off on the chemo. After Mom died, I started to relax a little bit, and then we got slammed with Ally's diagnosis. It is very hard for me to let my guard down. I am constantly worrying about what is going to hit my family next. But hopefully, it will involve more days like this.....
Putt Putt with friends
So glad to hear all is well. I have learned over the course fo the past eyar that silence is a great thing, but I still wonder. Enjoy planning and dreaming. You deserve it and remember, illness or not, we all have to reschedule at times. Have fun and breathe deeply.
ReplyDelete{hugs}
Amanda
I was hoping for a happier post! Yeah Barnett Family! Looks like a lot of fun in the sun!!! Kids and I are headed to Wisconsin July 1 -18th. Kac will be there for a week of it. Does Ally need a new Packer hat??? This could be their year!
ReplyDeleteHugs and wishing you the best July possible!
YAY, so much fun! Very happy to read she gets to take prednisone instead of the dreaded decadron as we call it in our house. Prednisone doesn't even compare which you will see each month and also watch it become a distant memory! Have fun together this summer and definitely plan on having LOTS of it :)
ReplyDeleteTake care,
Diona