Thursday, June 21, 2012

Day +8

Preparations are being made for St. Jude's 50th Anniversary. Huge white tents have been set up around the hospital. Back at the Target Houses, the crews have been non-stop literally scrubbing the houses and grounds from top to bottom. All of the tables and chairs have been sanded and re-stained. New flowers have been planted and are literally everywhere. It's just beautiful here right now! We feel like it's just so appropriate that we will get to enjoy this HUGE celebration. Not only because we are so grateful to be here, but it couldn't be better timing!

Tomorrow morning, we will get to the hospital very early for OT and Kayla's GCSF. The schedulers have been kind enough to schedule our appointments around the concert. Yes, you read it right! To start off the 50th Anniversary Celebration, Jordan Sparks will be performing for us all! How fun, right? Kayla is SO excited. She loves her music. I am hoping to get there as early as I can to grab us some good seats. I am thrilled for Kayla  because she truly deserves this experience so much.

Today, we had a very long day at the hospital.  Basically it was a lot of waiting around as it was determined that Kayla would need Blood and Platelets again today in addition to her GCSF.  The wait time just to get the first bag of platelets hung was more then two hours. So, while Denny was at the other side of the hospital donating his, we were in room 26 in the Med Room watching the bag slowly drip. drip. drip.  It's too bad that we can't be direct donors.  Kayla asked the nurses if she could please get her dad's blood "because she knows it's healthy and that he has a big appetite". We all laughed.  She is making a huge effort to try and eat now which is fantastic!  She is really trying and we are very proud. Tomorrow is most likely her last bag of lipids, so we need her to really amp up that appetite quickly. This morning she was so excited about it. Tonight, her enthusiasm has lessened.

 Waiting for the platelets to drip. That's them in the yellow bag.
 My view for 5+ hours today
Watching a movie and eating pudding in the Med Room. Like the Henna Tattoo? This boy knows how to steal a momma's heart!
 Almost finished. Time for Blood now. Only 2 more hours!
Anthony whipped himself with the tail of a rubber snake (after I told him 1,000 times he could hurt his eye) and so off he ran to have someone from child life make him an eye patch! He is too much!
 Drip. Drop. Drip. Drop. Thank you to the donor for making my baby feel so much better!

Back at the Target House, the Dunk Tank is in place. There will be professional athletes sitting in there tomorrow night! That should be FUN. 

There is a mini volleyball net set up and there are pinwheels everywhere! I hear they aren't even close to finished decorating. I'm telling you, the 50th anniversary of St. Jude is no joke! Glad we get to be here for it.... you know. If we have to.

Tonight, when we finally returned at 6pm from the hospital, Kayla had a very special surprise waiting for her. A beautiful handmade butterfly... it is the sweetest thing. Alli, Kayla loves it. Thank you! Alli has started a foundation called  Butterflies For Courageous Kids .  I think it is so amazing all of the special things that people have done like this after going through this battle or knowing someone who has. Also, there is Project Maisie Hugs and you just recently saw Kayla's JOY when she received one of the Joy Jars from Jessie Rees Foundation where kids battling are encouraged to NEGU (Never. Ever. Give. Up.)  Last, I have added a picture of Kayla enjoying her Netbook that she got from Keep Kids Connected which was started by a now 16 year old cancer survivor named Caitlyn who was diagnosed at 13 yrs old. She was given a Netbook and found that being connected with her friends or family that couldn't be there during her treatment was what made it more bearable.

 Look at how pretty this is! See Kayla proudly displaying her legacy beads in the middle? Love it!

Here is Kayla with her Maisie Doll... and of course, she wanted a picture of Meow-Meow in it! She misses him so much!!

 Kayla with her Joy Jar :)
 Kayla having fun on her Netbook! She LOVES to Skype.

I completely understand how these wonderful foundations or non-profits are started out of LOVE and the desire to spread hope to all of the courageous warriors out there. I haven't figured out yet where all of this will lead me, but I do know that I am for sure spreading the need for awareness. If you or someone you know is battling, please look into these wonderful foundations. People are so GOOD.


  1. Sorry I cant send any thing but my prayers. My hubby has cancer and i read your blog to him and it helps him we love you here in wv thanks for every thing Kim Bowen

  2. So nice to read about all the inspired people who have gone on from this place to give back to others who are there. What love! Can't wait to see photos from the 50th party. Enjoy it! xo Allie

  3. Wow! Have fun at the party and concert, sounds like it will be a blast!!!! Kiss Kayla and AJ for us!

  4. If you decide to start something for cancer awareness, I have a website that is paid for that I'd be willing to donate. We just need to change the domain name, which shouldn't be too hard. Plus, I went to school for Public Relations and Marketing. If you need help getting your idea into real life, I can help. Plus, my mother-in-law is a breast cancer survivor. I'm sure she'll donate her web development skills. I also have a former tenant who is a child cancer survivor who works on web design and development who would also donate his time.

    Just some food for thought. Let me know if have any questions about it. Maybe we can make something work.

    And way to go Kayla!!!!! We keep rooting for you!!!

    Allyson Stallman

  5. I love that picture of Kayla and her Maisie Doll, Her love light is glowing through her eyes. Her strength and sweetness brings me to tears. We love you Kayla and so thrilled and happy for you that you are almost back home again with your precious Meow Meow :)
    Helen and Maya from Novato