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I’ve been trying to remain optimistic about my son’s aide and that we could work around her illness and treatment, but things seem to be changing weekly with her right now and I’m starting to lose my optimism.

I know it sounds really cold and horrible, that I’m thinking about the impact her illness, treatment and recovery will affect us, but as his managing employer, I have to think about his program and his grant. I have to justify breaks in services with the funding source and monitoring agency. Forgive me if this sounds really selfish.

Initially, she indicated that she required a lumpectomy and the removal of some of her lymph nodes. This was to occur on May 11. She was to expect approximately 2 weeks recovery time, then chemotherapy was to begin. She was trying to get them to schedule her chemo on Fridays, so it wouldn’t interfere with my son’s schedule and she wouldn’t have to miss any more work than absolutely necessary.

That changed last week. They decided to postpone the surgery and start chemotherapy first. They told her the chemo would be given two days each week, one day she would have to be at the hospital all day, the other day she would come in and receive an injection and be on her way. She indicated they scheduled her full day of chemo on Thursdays.

I wasn’t able to follow her very well as she explained one chemo would be in rounds, the other would last for a year.

One of the days my son volunteers is Thursdays, so this means he’s back to one day of volunteering each week again, if she’s able to continue at all. We have no idea how the chemo will affect her health, if she’ll be sick, etc.

This week she posted on Facebook that she has the BRCA gene mutation that predisposes her to cancer. She also posted that she’s opting for a radical double mastectomy and hysterectomy.

This would seem to dramatically change things, as her recuperative time is apt to be much longer.

My son is already becoming a bit stir crazy, having only gone out once last week with his aide. I had to remind him he won’t be going out this week at all and we don’t have a plan past this week. He’s extremely bored, perseverating on her absence, asking me repeatedly if we’re going to have to hire someone to take her place while she’s recovering. He keeps reminding me that “friends didn’t work” and that we don’t know anyone else.

My husband agrees that we’re going to have to hire someone else to handle the time she can’t fill. It’s one thing to have a tentative schedule, but to have it all hanging, without any projected time frame is very difficult for my son to cope with.

I hate having to think about this. I’m not good at putting my family or myself first, I usually think about how other people feel first and figure out how to make things work for us later.

I just wish we had some sort of schedule we could look at and work around. I feel like such a horrible person for thinking about how this affects us, but what choice do I have?

I started out thinking we could just roll with the punches, but now, things seem to be changing without the aide touching base with us to explain what sort of time frame we’re looking at now, that more changes have been decided upon.

I think I’m going to have to start to look for a back-up aide, one who can take on all the hours available for a while, until our aide is able to complete a schedule with some consistency.

I think I was being a bit too optimistic initially, perhaps not wanting to really deal with the reality of how her diagnosis would impact our family. I think I wanted to believe that things would be handled relatively quickly and that only minimal interruption would take place.

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