chink in the armor

I must apologize for not posting sooner.  Thank you Gail and Jimella for the gentle reminder that people are wondering how Aly is doing. 

Call it writer’s block, call it needing a break from all things medical…I don’t know, I just haven’t felt like writing.  I’ve had a chink in my armor.  This whole thing has been too much of an emotional roller coaster and my emotions have gotten the best of me this week.  I’ve been holding it together but for some reason this week I’ve felt like I hit a brick wall.  Frustration is at an all time high; frustration with the doctors, frustration with the support staff, and frustration with the Make a Wish program.  It has all converged at once.  I won’t go into all the details other than saying, “Everyone needs to get on the same page!”

Aly is doing great, making her typical speedy recovery.  We are hoping she will be released from the hospital today or tomorrow.  It has been a struggle to get her to do the things she needs to do and I don’t blame her not wanting to do anything but sleep, but she had some goals to accomplish in order to be released, like eating and doing physical therapy and she hasn’t wanted to do either.  I know some if it is because they have her on strong pain medication when she tells them her head hurts, stuff that makes her sleepy.  We weaned her off that yesterday, cutting it down to Tylenol, and by the end of the day she was more like her normal self.  She’s still got an attitude, which again is understandable but makes things just a bit more challenging.  Her eyesight still comes and goes.  I know that is worrying her and I know the stitches on her head are making her insecure.   She had a short chat with the staff psychologist yesterday and Aly said she was frustrated as well. 

I’m hoping we’ve turned the corner.  We have been waiting to hear what the next step is.  Aly’s cancer doctor has been out on medical leave for the last two weeks and the fill ins do not know what the plan is.  That is part of the frustration I mentioned.  It is the same old story, hurry up and wait.  Even the neurosurgeon said to us, “it stinks having to have things done during the summer.”  It is vacation time for everyone but us.  Get one thing done then sit and wait for a decision to be made while all of our lives are put on hold.  It is hard seeing pictures of other peoples’ summer vacation trips.  It is hard to think about Aly missing out on summer and possibly part of the school year if radiation is next.  This is just plain hard all around!


UPDATE:  Shortly after I posted this Kevin called me to let me know everyone was on the way home...so Aly is at home today.  She is resting, tired with a headache, but she is home....