Wednesday, June 27, 2012

Day + 14

We all know the feeling or restlessness. Counting down the hours until you have to be up and begging your brain to shut off and let you sleep. I tossed and turned. My back was throbbing and I found myself thinking about the Brain MRI in the morning and longing for my mattress at home.  Finally at 3am I realized that sleep was just not going to happen for me so I went out to scrunch up on the tiny blue couch in hopes to at least get my back to feel better. The sound of the hepa filter and the refrigerator humming was just enough white noise to eventually lull me to sleep at almost 4am. I am sure it's just the anxiety.

It's as if Kayla's body knows we are heading home soon and it too is excited.  We had been saying silent prayers that her ANC would be at or above 2,000 today so that we could officially be on our way back to E clinic and finished with GCSF. We were shocked to find out that her ANC is now at almost 9,000! GO Kayla GO!!! So, we will be visiting our friends in E tomorrow... WHOO HOO!!! This is one huge step in the right direction.  We are pretty confident that tonight will be Kayla's last night on TPN if not tomorrow night. She now cries every night when she has to be on it. She is making a huge effort to eat now and is frustrated that "the doctors don't seem to care or notice". We keep reminding her that we are proving to them that she is in go mode by continuing to eat what she needs to stay healthy! So far, she really is doing good. I wouldn't say fantastic, but we are proud of her continued efforts. We will get there. Her stomach just needs to stretch out a bit, which it will do.  She looks great. Her smile is bright. Her attitude is back. We love the spunky Kayla!

This morning, bright and early, Kayla had her MRI which she fell asleep during.  We haven't gotten results back from it yet, but are hoping to hear something tomorrow. There is a possibility we might not hear anything until her clinic visit on Friday though. Of course, I will post once we know.  She also had her audiology visit. Her hearing has not changed at all in the right ear which remains at a mild loss in the high pitch area. Her left ear has not really changed either remaining in the middle of moderate loss. They recommended that for school Kayla be seated nearest to the teacher and if they notice her struggling at all for the teacher to wear a microphone.  Unfortunately hearing is not a muscle. You can not strengthen it once it has been damaged. There is no rehab for it. So, it is what it is. We were told that her hearing can continue to change over the next few years as the chemo will continue to take it's toll. But the vast majority of the damage has been done.  This is why she will have an evaluation in Audiology each and every single visit back here to see if there is any noticeable change.

 This is Kyla having her audiology test
 This is Anthony saying, "your doing great sissy"

Kayla then ended the day with a fun photo shoot in her school room w/ our beloved Michaela. Again, we are so proud of her and so very happy to be able to help St. Jude in this way. These pictures will be used as a part of a mailing to go out to people who donate here. They will receive a picture of a child's face from St. Jude making their donation much more personal.  It's a beautiful thought that there will be people from all over the world looking at Kayla and smiling knowing they have helped her and a LOT of other kids just like her. An average donation is only $35. Every penny stays here! St Jude shares their research and protocols with hospitals all over the world. So even if someone with a catastrophic disease doesn't get treated here, they too can benefit from all of the research done here.  This is only made possible through continuous donations that fund these brilliant scientists who are tirelessly searching for less harsh treatments and most importantly, our cure.

Tomorrow we don't really have any more major tests to be done, but look forward to checking back in with our favorite receptionist, Miss Jackie in E. She won't let Kayla check in without a fist pound or a hug first. We are really anxious for our "proposed" date to leave. Not just because we can't wait to be home, but because it is now summer and flights are getting harder and harder to get! We still have our car to ship back home too. We figure worst case, we can just take a road trip home. As fun as driving 2,114 miles over 34 straight hours with my family sounds, it's not my first choice. 

Last night, I turned in our "Leave your mark" square that will soon hang on the wall of the 5th floor that has been our home away from home for the past 7 months.  That was yet another whoa moment. I can't wait to be here for visits and stop by to see it again. And then leave!  ;)


  1. Go Kayla Go! You are working hard and staying strong! Can't wait to hear that you get to go home! You are an Inspiration Warrior Princess! Keep up the good work! Oh yeah a dance would be awesome! You Got This Girl!

    Erin Melrath

  2. To All of You,


    So loving and full of hope and your signature(s) is/are all over it. :) :) :)

    Y'all made my heart sing tonight. Love you all so SO very much, and am so SO SO proud to call you My Family.

    Thank you St. Jude for Everything.

    With so much love from California,

  3. Wow! 9,000!! That is amazing! I love the "Leave your mark square"! Betty Criesco

  4. That Leave Your Mark Square is AMAZING!!! It's gorgeous! I hope Kayla receives good news tomorrow and that you can easily book flights to get home soon. You're still in my thoughts and prayers constantly! Love and hugs!

  5. Love reading all the "going home" planning in the works, especially with such good reports coming in for Kayla! That's a beautiful "Leave Your Mark" square, knowing your family has a huge, inspiring place in the hearts of all who have worked with you. Love, hugs, AuntieAnn

  6. What a wonderful memento for all of St. Jude's to remember one special little girl and her families spirit that echoed through the halls of the Target house. Cannot wait until you all return! So proud of you all!

  7. I loved reading your Leave Your Mark legacy. Well done, Annie.