Wednesday, May 1, 2013

Day 1 - Pins and needles

I hate waiting.  I mean, usually I can be a very patient person. But for scans that are life threatening, I think you should be notified immediately.  It's just the compassionate thing to do. Grrrrrr. Just saying.

Yesterday Denny and Kayla arrived safely in Memphis.  They got set up in their room at the Grizzly Hotel and ordered dinner to be delivered.  Unfortunately, Angiel's mom was feeling a little under the weather so they decided to postpone their visit until tomorrow night.   Den woke up at 4am to register for his summer college course, Biology.  It will be a very very busy summer for him.

The day started at 7:00am.  Unfortunately, Kayla was not so lucky having her IV started again this time.  She was pretty upset as to be expected.  They headed off to the all important MRI where we have been many many times.  The room is filled with new patients, routine scans, and well... you can just imagine.  Last weekend Kayla fought of a fever and still had the residual cough and sniffles. Not only was I afraid to have her fly because of the cabin pressure and her ears, but we fear BIG TIME for the kids with zero immune system. Kayla agreed that she should wear a mask when around any kids.  Luckily, she gets it.

Kayla was excited to learn that after her MRI, she would be able to go and see a magic show. There was a world famous magician visiting for the day putting on a spectacular event for the patients and families. Only at St Jude.

Her audiology exam went great. So far, she is stable! This is great news!!!

In the Endocrinology appointment, we learned that she only grew 1/2 of an inch instead of the previous trend of 1 inch.  They will keep a close eye on this. I won't go into to much detail because I don't want to worry anyone or myself. We will cross that bridge once and IF we have to.  

During Speech, Kayla scored off the charts. She was ranked 20% above her peers.  GO Kayla go!!

After the appointments were over she got to see lots of old friends, ALSAC staff, her teacher Michaela & Miss Theresa. It was a very busy day. There is a large print that we will get to take home from her Thanks & Giving campaign. I can't wait to see it! 

Tomorrow another MRI is scheduled at 6:45 am.  (4:45 am California time) Ouch! She will also have Physical Therapy and finish with a sedated Lumbar Puncture.  Finally, we should have some results in the afternoon once they meet with Dr. Gajjar.  I will update here as soon as I can. I have busied my work schedule like crazy tomorrow to keep my mind occupied.  For now, I hope my angel sleeps well. 

Anthony and I went on a date tonight. He was the perfect gentlemen. He held doors for me and everything!  We both are feeling a little less than complete right now. :(

With the Make-A-Wish trip coming up next Tuesday, I can't help but think right now that it's either going to be the best timing for the trip EVER... or the worst.  I'm keeping positive and picturing us breathing that deep sigh of relief once again while on the beach for the very first time in Hawaii as a family. 

Thank you for your thoughts, good vibes, candles and prayers.  ALL are much appreciated. 


  1. My thoughts and prayers are with you all.

  2. You are in my thoughts and prayers always! <3

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    1. Oops! Made a, here's my correction:

      I'm so very proud of you Kayla! You're such a mighty and strong're the most incredible granddaughter any grandma could ever EVER wish for. I'm praying for you baby, along with the entire KAYLA ROSE FAN CLUB!!!!

      Love, Neena