Why, why, why...

I'm struggling with why today.  This has been a disappointing, trying, demanding day.  We started out at the opthamologist this morning.  We've been anxiously waiting to see an eye doctor in the hopes that they would tell us that Aly's vision would continue to improve and that her eye nerves just had to continue to heal after the surgery.  Well, today we were told that Aly's nerves look gray or white-ish in areas meaning they are damaged beyond repair.  Normal looking nerves should be a healthy pink color.  When they are gray it means the cells or neurons will no longer regenerate themselves.  Aly is back to her very limited field of vision.  They did a field of vision test, in which she looked into a machine with each eye and lights blinked on and off in different areas.  When she saw a light, she was supposed to press a button.  They started with her right eye, which is the worst of the two.  The test started and several moments went by without her hitting the button.  The nurse kept asking me if the lights were blinking, I could see them.  Aly could not.  More time went by and the nurse then asked Aly if she was ok and reminded her to keep blinking.  Soon the test was over and Aly had not pressed the button once!  The left eye was not as bad, but there were still many quiet moments.  She can see out of her right eye, but Aly explains it as "spotty".  The field of vision test showed that she could only see out of half of her left eye, close to her nose.  She has no peripheral vision.  Why?  Why did her eyesight return to near perfect, during chemo, only to have it yanked away again?  I cried and Aly's only comment was, "well that kinda sucks."  After her appointment we stopped for some lunch.  We had a long chat about this finding.  I tried my best to look for any positives.  Aly told me she is tired of hearing the saying, "everything happens for a reason."  She doesn't know why this is happening and I don't either.  The only blessing is that she is still able to read.  I can only keep praying that the radiation will not affect things further.  But it is hard to keep praying when you don't understand why.
After lunch, it was on to proton therapy.  We had a short chat with the doctor.  Once that was done, they took vital signs and then we saw nurse Annie.  Nurse Annie had something for Aly to complete so she could be a part of a long term study group.  The group follows patients who've had radiation so they can see if there are any late side effects down the road.  Anyways, to be part of this study group, Aly had to take a pregnancy test.  Yes, a 10 year old taking a pregnancy test.  I know!  Totally absurd!  You should've seen the look on Aly's face!  All I could say is, "What?"  During her doctor appointment yesterday, she was asked about taking drugs and drinking alcohol as well...When the nurse walked away today, Aly mentioned how she can't believe she's been asked these questions.  Again, Why???
Then finally we moved on to the treatment which was very trying.  They walked us into the radiation room.  I was able to stay while they started to get her situated, but then I was quickly escorted out.  The room was enough to make me cry again.  As you walk in it looks like part of a hollowed out airplane with a table in the middle.  Aly told me later, that the table slowly spins.  I thought it was the machine that was supposed to spin around her!  It was very daunting.  The technician tried to assure me that it looks worse than it actually is.  He said, "it is actually very relaxing."  Hmmm...wonder if he's tried it before?  They let me take a picture and I will get that on here.  They laid Aly on the table, on her stomach and put the mask molds on her face and back of her head.  If you can imagine putting something on your head where it confines you and doesn't let you move your head (at all) and then be told you will have to have it on for about an hour...yeah, I can't imagine it, I'd be going crazy.  Aly had a tough time.  She said her nose started to plug up and she couldn't breath.  Well, she couldn't open her mouth either with the mask on, so she had to grunt to let them know she was having issues.  They took a break, which lengthens the process as she has to be lined up perfectly, so they had to start again.  During the break it sounds like she started to cry and she later told me it was because she missed her dad.  So, what was supposed to be a one hour process, turned into two.  We did not leave the proton center until 3:30.  Why does this sweet girl have to go through this scenario?  Oh, it just boggles my mind.  I was getting nervous that it was taking so long.  At one point they gave me an update, but then another hour went by.  An elderly lady who was waiting for her husband noticed I was getting upset.  She came over and asked if I was all right.  She asked who I was waiting for and I told her a little about Aly's story.  She asked if she could give me a hug and she wiped my tears.  She also bought a teddy bear for Aly.  Apparently, every Wednesday, there is a women who sells apparel that have the proton center name and logo on them.  This time, she also had a teddy bear that had a t-shirt on and this nice elderly lady begged to buy it even after she was told it wasn't for sale.  She brought the bear to me and asked me to give it to Aly.  She said she hoped to meet Aly in the coming days.  There are many lovely, caring people in this world.  That made me want to cry even more!  I did my best to pull it together before Aly was done.  Of course, then she walked out.  The mask she has to wear is like a hard mesh, so she had these terrible indentations on her face.  I'll have to try to picture that as well.  I told her it makes her look lizard like and that she should write a kids book about a super hero lizard.  She is exhausted and complaining of a headache this evening.  Oh, I just hate that she has to endure all this!  WHY???

P.S. -  please add Luke Letellier to your prayers.  He is a teen boy who is also from St. Michael.  He is fighting cancer as well and he and his family did not get good news this week. 

Thanks!