Wednesday, February 19, 2014

Day One... never a dull moment.

It's been a long day. I can not even imagine how tired Den is right now.  The days at St. Jude are literally exhausting. 

Kayla had a few big appointments today.  She had her MRI. Of course, that's huge!  So important and to never be minimized again by me. Ever.  Recently, Kayla had been complaining of some vision changes. She was having a tough time seeing and couldn't really pinpoint to us if it was distance or close up that was worse. Honestly, I didn't really go to any dark place.  I was about her age (maybe a little older) when I needed glasses for the first time.  A few friends of hers are wearing them now.  She had even mentioned how it wasn't fair and that she thought that glasses were so cool!  So, of course, I was hoping it was just that. At a minimum she would require glasses.  She did have a vision test at school which she did not pass.  They attached a note asking us to see a "real" eye doctor. So, luckily we were able to get her in while at St. Jude.  It's a place where they know specifically what to look for and are especially used to dealing with vision problems related to cancer or from treatment. 

Kayla has cataracts in both eyes.  They are small but were not there before.  This is a result of her treatment. Treatment that if she had not had, she would not be alive today.  I am afraid that it's just a side effect from what we had to do to give her life. A trade.  A trade we made and we still don't know what it will continue to do to her.  It sucks but I am SO grateful that it was not a new tumor causing the vision problems. It very well could have been and I am focusing my energy on being grateful it isn't that.   Right now the plan is to continue to monitor them.   Den will talk to Dr. Gajjar more about it tomorrow.  For now, we are told that surgery is not something they want to jump to yet.  If it gets worse, then that will be the only way to correct it. We will cross that bridge if we have to.  Unfortunately, no glasses will help with this vision problem.  So, we will have to find ways to modify in the classroom.  Kayla was SO upset.  She wanted to "prove" to us that she wasn't making it up... but she did not expect to have something that would not be able to be corrected with glasses. 

Tomorrow is a big day.  In the morning, she will meet with audiology to have a hearing device fitted to hopefully help with the ringing in her ears.  Then, she has the big growth hormone study.  I am hoping to skype in and be there to support them in any way I can. It's going to be long and tough.  Then, when that's over, they will head over to E Clinic to meet with Dr. Gajjar to discuss the results of the MRI and find out more about her cataracts.

Donna and Katelyn are on their way here. God love them!  I should really buy one of those pedometers on the days of scan results.  I bet I take a million steps with all the pacing I do....

Thank you for all of the amazing support, texts, emails, love, prayers and candles. Don't stop!


  1. Continued prayers from Rus and I.

  2. With Kayla in spirit, as always, love, hugs going out to all from PA! xxoo AuntieAnn

  3. Ugh! Another horrible side effect! I will pray that there are no more side effects and that the scans are all clear! Betty Criesco