Monday, October 1, 2012

Day 2. Check!

Day 2. I forgot how long and draining the days here at St. Jude can be. Maybe the lack of sleep in 3 days has helped contribute to that feeling also. Even still, it was a long, long day.  The rain continued to fall here in Memphis and was really carrying on this morning as we sleepily walked down the overly-lit hallway to the elevator in the Grizzly House. We arrived at 7:20am for the start of tests with our visit to A/T for labs. Kayla was a complete trooper and didn't even wince at the needle poke. We all laughed when she didn't even feel it. Gotta love those J-Tips. (almost an instant numbing agent for just before needle pokes)  We rejoiced over the 3 ounces she has gained since leaving in July. Yes, you heard me right. Ounces. So, this just goes to show how much weight she initially lost once going off of her TPN/Lipids.  It is taking time for the food to stick to those bones, but by golly it is finally starting to really stick! I don't care how slow as long as it's sticking. Not only is she up in weight, she has gained a whole centimeter in height.
Someone has discovered cinnamon pastries. Kinda late to the game? Yes! But, better late then never. Here we are in A/T. Those are the vials getting ready to be filled w/ Kayla's beautiful blood.

Kayla and I had a fun time showing Nana the grounds of the Hospital and the Chili Care Center.  It really is an incredible hospital.  Nana was constantly saying how everyone is so nice here. Well, almost everyone. As Kayla continued to eat through all of her appointments, the day just couldn't really go any better. We continued to run into old friends and favorite staff members. Kayla had a long check in with Speech Therapy.  She ranked off the charts landing at a combined score of 99% (which they rarely if ever see in patients let alone any kids her age acheive.  This test is an average between all kids, healthy and not) GO KAYLA GO! She was ranking in at the level of a high school level teen. We have been joking with her all night when she asks us silly questions wondering what happened to our genius kid. haha! We got the "All Clear" to not check back in at speech for a year.  They do want to continue to monitor her and note any change. We expect little to no decline in her progression.
 Lunch time! Finally, able to enjoy all of their amazing food! Eat Kayla, EAT! :)
Eating Chocolate Cake while testing in Speech Therapy. Eating her way through St. Jude. I LOVE it!

Finally, we made it over to Lauren in Physical Therapy for our check in. Ahhh. Oh how we LOVE PT. Seriously, it is the coolest area. It's always like a breath of fresh air to see these amazing therapists work their magic on these kids. Again, Lauren was blown away at how wonderful Kayla looks and how well she is doing. I constantly got the thumbs up and she just kept shaking her head in awe at what a difference "this" kayla is compared to the last time she was here. It was like music to momma's ears! Again, all was great and we were cleared until the next check up in January.  Kayla was encouraged to continue working on building muscle since muscle does weigh more than fat! ;)

Last, we went over to The MRI department so we could wait to be called back for the first of 3 MRI's on this visit.  Today was Kayla's Functional MRI.  I walked back with her and helped her dress in a gown. We met with one of the doctors who again went over the test and how it all works. We did some practice tests so Kayla would know exactly what to expect. They use these MRI's for a lot of their research here.  Again, she did fantastic scoring perfectly.  GO KAYLA GO!  

The day would not be complete without going up to the BMT floor (where Kayla had her 4 rounds of chemo). We had to get a hug from Miss. Teresa and Dr. Shook.  It was SO good to see them both. It has been a VERY hard week on that floor.  Our friend Wesson devastatingly earned his angel wings and his buddy Matthew is fighting tooth and nail to not follow wesson's baby foot prints up to the beautiful light.  It was clear that some good news was needed right now.  I can imagine not many people stop back up there to visit and see them when they are here on the other side of the glass. I realize that it's important for us to remind these amazing doctors that they ARE saving lives too. That miracles do happen and that kids can leave, come back to visit, leave, and continue this pattern for years or their entire lives to come. It can and does happen. I know they too need to be lifted. Kayla did that for them today and that made me feel so good that we were able to give them a boost of energy to continue to fight for all of the kids here.  I feel so helpless, but for some reason, I actually felt like maybe it helped a little. If it did, I am so grateful!

Tonight we had a special visit with our friends Damaris, Angiel and her brother Markus.  It was SO nice visiting with them and just having a laid back evening filled with Pizza and giggles. I just wish we had had more time.  We have missed them so very much!  See? We are packing it all in! Lots to do!!!!

Tomorrow Kayla starts the day off with her Brain MRI. This is the one I consider the most important. They all are, but this is the big one. Please send good thoughts, vibes, prayers or whatever positive energy you can that all things remain clear. I am not worried. I know we are in good hands and that life is out of our control. Still, I know that it does help!  On that note, PLEASE do the same for sweet Baby Matthew. He has just endured his second Bone Marrow Transplant and we just don't know how much more his body can handle.  He is in the PICU.  This is their very last option...

Just a little side note (because I have been asked several times now) we will not have ANY results of the MRI's or the Lumbar Puncture until Thursday afternoon when we meet with Kayla's Dr. in E Clinic. I promise to post as soon as I know.

I am hitting the sheets and desperate for a full nights rest! I will update you all tomorrow. G'night!


  1. Oh my gosh Annie,

    She looks so good! I was just struck tonight looking at the photos of how beautiful her healthy coloring looks! a-maz-ing! love it!!

  2. This blog was so UPLIFTING tonight! Thank you Annie for your blog and your perspective. I'm amazed at how great Kayla's doing each and every day.......and so nice of you all to visit the Chemo Floor....praying for all your St. Jude families tonight, special just for YOU!!


    P.S. Sweet dreams everyone!!!

  3. So wonderful to hear how we'll Kayla is doing! Thank you for continuing to share your words and photos. Our prayers will be with you and your friends! Lots of hugs!

  4. Great update! So glad this is a short visit and she's "acing" everything. Kayla looks great! I will be sending positive thoughts for the brain scan today.

  5. What wonderful news that she is doing even better than expected so far!! I will continue the extra prayers for Kayla your entire trip!

  6. Thank you for the story of yesterday's visits....Yaay, Kayla, Yaaay! She looks so terrific! Sending loving, healing thoughts your way for the MRI and appreciate knowing it takes a few days to get the news. That's difficult. As always, hugs and love, AuntieAnn and all

  7. Kayla looks great! You can always tell how she's feeling by her eyes and she must be feeling well because they are bright and beautiful!! We hope your new normal will continue and pray her tests will be clear!
    Keep up your positive attitude and strength Annie!
    Lisa Byrne

  8. Kayla, you are an inspiration, in all the parts of my day that seem to not go the way I want them, the Lord always brings your face to my mind... to just remember none of it matters. Keep up the fight!