Monday, November 3, 2014

Day 1. Nov 3, 2014

It was a busy day here at St. Jude and I am kicking myself for not bringing my pedometer with me!  I bet I logged in quite a few steps today running all over this place.  I don't see it in my jeans though unfortunately.  What? I know it's only been one day, but I was kind of hoping for a miracle.

Our day started out in Assessment Triage for Kayla's weight, height, blood cultures to be drawn and an IV inserted.  We had an incredible nurse who listened to our concerns that the past few times she has had an IV, they inserted the wrong gauge tube.  Kayla's veins are so tiny so they always reach for the smaller tube, but that tube doesn't allow enough room to pass the contrast dye through for her MRI.  The contrast is crucial so that we get the most accurate picture of her precious brain.  This time the nurse nailed it and got it in on the first try!  We were laughing so hard because Kayla's height and weight are just about the same... 51.7 lbs and 51.5 inches tall!  How funny is that?!

After A/T we headed on downstairs for Psychology.  Normally, they split the 6 hour visit into two days.  But, because Dr. Hopper noticed that the only thing we have scheduled on Wednesday is Psychology, he asked if we would be interested in trying to cram it all in today so we could leave earlier on Wednesday. Ummmm, YES please!  Problem was, travel couldn't reschedule our flight until Dr. H took psych off of our schedule... It was a long 5 hr wait, but Kayla did it!  I was at her beck and call bringing her grits & OJ.  She did get a quick 30 min break towards the end so we could grab lunch.  While Kayla was taking her tests, I snuck over to the gift shop to see what new fun stuff they had.  I was so excited to run into Kapri's mom, Becky, and her two other two daughters!  It was great to see them.  We are going to try and meet up at the Target house tomorrow for some fun after our long days are over. Kayla really wants to give them a tour and show off her old stomping grounds.  Because they have a lot of people with them at all times (and the target house only allows 4 people at a time), they are renting a place in Mud Island.  I hope Kapri has enough energy to hang tomorrow.  Such a sweet girl from Northern Cali fighting the same cancer as Kayla!

The good news, no, GREAT news is that Kayla scored extremely high on her Psychology exam.  Not only was she average to high, she improved her score from a year ago which I was told is very rare!  How could I be any more proud of my amazing fighter??? Dr. Hopper said, "I bet all of her teachers just love her to pieces!!!"  He has no idea how much!  And we LOVE them!!!!

We popped in for a quick squeeze with Miss. Michaela and left another finger print on Kayla's E-Clinic tree that she and her daddy started in August.  It sure is growing.  We hung with Jackie and Crystal for a few... love them so so much.  We passed Lizzie in the hall and she said she is going to see us in E Clinic tomorrow.  I think I forgot to mention a little bit about Miss. Lizzie.  She was our FAV nurse who worked with Dr. Gajjar.  It was Lizzie's kind eyes, gentle spirit & whitty humor I have clung to at each and every MRI result visit. Just having her in the room could calm the most nervous soul.  Recently, she made a very big change in her role here at St. Jude.  She now works in the "quality of life" department.  Yep, hospice for these precious children and their families.  As I was wiping tears away when Denny told me about this change in August, I quickly gave a huge sigh of relief when I learned just where she was going.  Not only would she be the one person I would want there for us if we ever had to go there, but I am certain she brings that level of comfort to so many others.  She is one of a kind....  So, it was great to see her.  We all love Lizzie.  I look forward to visits ONLY in the hallways, cafeteria, and E-Clinic stalkings....

 Kayla's tree is GROWING!!! 

 I placed my " <3 " next to Kayla's blue thumb print. See it?

Jackie, Kayla & Crystal.  Kayla wrote the question of the month on the "famous" E Clinic white board.

LOVE these amazing ladies!!!

It was finally time for the big one.  The MRI.  We walked into the Imaging Center and it was just about empty.  I went back with Kayla to help her change out of her clothes and put her hospital gown on.  Minutes seem like hours while she was back there, but today I was happily distracted seeing all of the sweet posters, messages of support and even a video from kayla's class on Facebook.  You all are amazing and we love you!!!! Thank you for keeping us lifted during an always very nerve wracking time.

When I went back in to help Kayla get dressed, she asked me something that literally knocked the wind out of me.  She said, "Mom, what would happen if I relapse?"  I was speechless for what seemed like an eternity when I finally just grabbed her and sobbed into her hair.  I told her we won't worry about that because that isn't going to happen.  She was crying and hugging me so tightly and telling me that she has always wanted to ask me, but was afraid of the answer.  I didn't have the most perfect answer, but it was all I could get out.  It's a word I despise.  I hate it with every fiber in my being. If it's possible, I hate it even more than the word cancer.  Cancer is bad enough. But relapsing is not something I can even say without having to catch my breath.  So I won't. I pray I never have to ever ever ever say it when it comes to my sweet amazing girl.  Nothing would break me more.  So to think of Phoebe who has relapsed 3 times... it just isn't fair. It isn't and my heart aches for all of my friends who have ever had to hear those words.  Please pray for these warriors and help us spread the urgency we desperately need for better treatments.  4% is not enough.  Let us be their voice.... help me scream!

I wish I could take everyone here with me to see the amazing place that St. Jude is.  There is no better place you could ever be to fight this ugly horrific battle. Once again, I am living the St. Jude perspective.  I don't love it.  But I am so grateful... Perspective is everything.

Tomorrow is another long day.  MRI results bright and early followed by Endocrine and the long awaited Laser Procedure. I am on pins and needles tonight as I wait to be able to share the next few updates.  HUG YOUR KIDS! HUG YOUR LOVED ONES!!!

Love to y'all from Memphis!!!!

1 comment:

  1. Sending hugs & love right back at you & praying always!! Love you both <3