When we were dealing with the air conditioning going out, it reminded me of last year when the same thing happened. We had a home warranty last time and I got quick service because we had a person with a serious illness on the premises. This time, I was thinking the same thing. It's been almost a year since Fiona took her pills and yet I still can't let go of the idea that I need to do whatever I have to do, to get whatever I need to make her life easy. I felt like calling and telling someone that she needed to get air conditioning again. Before, whenever she got hot, she would run a temperature. We had noticed this years before she got sick, I think she gets it from her dad, he has problems with the heat and gets raging headaches if he's not aware of how warm he is. When you run a temperature and are taking chemo or have a port-a-cath, you get a free hospital admission. So we were very concerned last year. This year, I wasn't as concerned, but I still had it nagging in the back of my mind.I wonder when this is going to go away. When I won't look at her as a time bomb. I think this is another one of those things that people, who haven't dealt with it, don't understand. There are no guarantees, they no longer call them cured. The term is now long term survivor. There are some kids with blood cancers that recur after 5 years. 5 years is the baseline for long term survivors. Not only recurrence, but the chemo she took can have long term consequences. I took some of the same medicines and I now read that the average age for children, who took this medicine, to have cardiac side effects is 27. 27?! I am now 7 years past that. Now I am starting to feel like a time bomb. That's not true, I have felt that way for a while. You should've seen TD's face when the oncologist shared that tidbit about both Fiona and me. The really wild thing is that the effects are not mitigated by working out. But I look at it this way, all of the stuff I do to keep my heart healthy can't hurt. But, I can deal with me, I know what I can handle. It's the idea that this little fluffy haired mama's girl could have to deal with that stuff again is what gets me.
For now, the air conditioning is nice and cool and she has what she needs and I can't really ask for more.
Oh, her next CT scan is August 3rd.
2 comments:
You and your daughter look gorgeous!
I am in awe of what you guys have been through. I know in a very small scale of how you must feel.. with Jerrod's crushed heels and my constant care for the last 4 months and now he is finally walking - with much tenderness - i find i wonder when we will "crash" with the next allergic reaction, shooting pain, inability to walk or need to sit.. this is all non-life threatening - although life altering in that he will likely not have the same ability or be able to walk / stand for long periods of time.. yadda yadda.. I say prayers for your sweet family daily. I know all of you have dealt with a lot.
Post a Comment