Forging Ahead

By Stephanie

   We started Avery’s second round of chemo last Wed.  It was the three days of round the clock pills.  The last day is the one with the meds that really kicked her butte last time.  She stayed home yesterday and today just taking it easy.  But it isn’t nearly like last time.  That’s a good sign that my the next round or so she will bounce back even quicker.  YAY!  And that her body is tolerating the meds.  YAY again!

We also meet with a Low Vision Specialist this week.  What is a low vision specialist pray tell?  It is usually an optometrist, but instead of just focusing on what prescription glasses you need, they look at how you function with your low vision.  They do a test on mobility and orientation.  How you get around and how you find your way in new situations.  They also look at different types of technical options to see if any would help.  Things like magnifiers.  I am sure she needs at least something.  And of course non of the technical things are covered by insurance.  And these are VERY expensive items.  Most in the $1000-$2500 range.    The doctor will prescribe what she needs.  The school will get what she needs for school.  Then it is up to us to get what she needs at home. 

They also increased her dose of steroid.  With her sight worsening it’s hard to know if it’s the damage already done to the nerve, or the chemo hasn’t worked enough yet.  So they bumped up her dose just incase it’s the latter. 

   I have this “test” I do with her to see how much vision she has.  It’s scary.  Every time I do it, it’s worse.  I would really like to STOP doing this test.  It literally makes me almost have an anxiety attack.  But, we need to see if there is any improvement.  There never is.  So I just try not to cry and be thankful, at least at this point, that she has any left.  Even if at 6 feet away all she can see is from the bridge of my nose to my upper lip.  (yep, try not to cry).