Thursday, April 26, 2012

Day + 10

It's hot out! That makes us excited because the thought of summer coming means we are closer to finishing treatment.  The gardeners have been very busy around the Target House the past week planting a ton of new flowers and getting the Elephant Water Fountain in the front up and running again. When we arrived in December, the fountains were already turned off for the winter. So, this is the first time we have seen them running.  They are magnificent to see!

Kayla has an MRI of her spine on May 3rd. She then has a sedated MRI of her brain and Lumbar Puncture schedule for May 4th. This is part of the protocol. The doctors look for any changes.

Today, Kayla had PT, School and her usual visit to the Medroom for her GCSF. Tomorrow, we will find out what her counts are at. Yesterday, they were at 100. So, we are on the upswing again! Hooray! Her energy is very good considering. Her nausea is mostly under control. All is as good as it can be. We were told by a nurse who has been in the medroom for years, that she was working there before they gave GCSF shots. She said that it used to take months for the counts to come back on their own. So, one more blessing! :)

I also heard of a girl who lives in Lebanon. She has been a patient since she was very young and is almost 18 now. This special girl has an enzyme deficiency. She is unable to get a transplant to help her. The medicine that she receives is given twice a week and will continue her whole life. Each dose is $250,000.00!!! So, that's 5k per week! St Jude has to have it on hand when she visits here for her check ups. Can you even imagine??? She would not survive without this medicine. I am still amazed by that story.  Like we are all aware, you see and hear it all here at St. Jude. The rarest cases. The miracle stories...

As I love to do, here are some pics from today. 

 Waiting.... we do this a lot!
Kayla at school. Usually there are other kids in the room working with their teachers, but today we had the class to ourselves!  Kayla is getting her one on one time with her teacher. They are working on division, multiplication and grammar.  She still loves school!
Here are some more pictures of inside "school". This is outside of the classroom. They have a cozy area where parents/siblings can wait. I took advantage of the emptiness today to snap a few shots from within. So cool!

 Simple decorations! Easy enough to recreate if you have a craft room.
 Almost 90 degrees. Humid. Loving the fountains!

 With Aj's new haircut, he sure looks ever more like his sissy! Wow. Who's who?


  1. Love these sparkling eyes and your most beautiful strong and inspiring hearts. Thank you and love, Frank and Mary Hoburg

  2. WOW that's exactly what I thought when I saw AJ's summer cut, they look even more alike than ever. What a story of miracles, thank you for sharing. St. Jude's is so wonderful to have that medicine waiting for her arrival. Glad to hear Kayla is doing well and that nuisance nausea is at bay. Warm weather awaits you here, we can't wait to have you home. Hugs to you all. Jayna.