Monday, August 12, 2013

1 year - day 2

Last night I couldn't sleep.  I don't know if it is more the anticipation of the possibly unexpected news, or just the fact that there is this dreaded appointment so stinking early that we just can not miss.  I always have this fear that my alarm clock will not properly go off.  Either way, I found myself awake most of the night except for about three broken hours. 

Kayla made it to her appointment on time and the scans went as good as they could.  Being that they are an hour long, she actually fell asleep during - lucky- well, no. Not really. 

Audrey, Carolyn and I sat and stared at the beautiful, huge tropical fish that swim in the MRI waiting room fish tank.  There is something so peaceful about that massive tank. Results have been heavy on my mind all day. Reading all of your encouraging notes to us really does help.  Having best friends here was the perfect medicine.  We find many moments to laugh and joke, just like we always do.  This morning, just before we Kayla got called back for her MRI, the girls were commenting on which fish they wanted to be.  Kayla said she is the Nemo fish and I am the cute puffy fat fish --- NIIIICE.  We laughed and laughed.  She kept trying to take the comment back, but it was too late! HAHA. Very funny Kayla Rose.  I will get her back for that one! ;)

Just following her MRI, we had another appointment at A/T for more labs. Unfortunately, there was no communication between clinics and they removed her IV prior to this appointment. So, she had to be stuck. Again.  

We quickly headed on over to the St jude gift shop to find something to soften the sting.  When my money ran out, we were done.  

Kayla had her follow up with Physical Therapy. During the evaluation, I was asked if she can get in and out of the car on her own? Could she kick a soccer ball?  Can she climb stairs without hand rails? All of the questions were happily answered with an enthusiastic "yes".  So many kids who have had the same cancer as Kayla can not answer yes to those questions.  For that I am eternally grateful!  She had rave reviews from her therapist who sad she has zero concerns for us at this time. When we told her that Kayla had recently joined her brother in his Tae Kwon Do class, she raised her eyebrows and beamed!  It truly is a miracle.  And just like that, and she skipped away down the brightly colored hallway with Audrey.  It is a miracle.   I will never take it for granted. Ever. 

Our final visit with the Endocrine doctor was pleasant.  There are no changes from the last appointment to this one.  Her height is still at 5% for her age group.  She has grown 1 cm.  If her growth remains at the same rate we will wait to talk about any future growth hormone tests.  If it falls off a bit, they will want to do it at the 1 yr 6 month check up in February.  So it just really depends.  If Kayla were say, 13 years old, it would be a more urgent matter. Because she is only 9, we have some time and flexibility still which is really good.  Until then, we just keep waiting for signs of puberty and hoping that the chemo and radiation didn't effect any of that... Just another thing we all often take for granted. 

Our day at St Jude is over.  So, we are beating the heat at the Target House again.  It's 98 degrees and soooo humid.  It's hard to breathe and the mosquitos have had their way with me again.  I forgot how big these vampires are here! We are happily enjoying a movie in the Amy Grant room.  My stomach is in knots. My concentration is low.  I am just hoping that this is not the last day of this new normal that we have grown to love and be grateful for.  So many friends come back to scan with their kids doing just as fantastic to have their wounds re-opened again.  It's just so scary and unfair.  So, hug your loved ones close and just don't forget to be grateful for even the slightest inconveniences.  Because everywhere you turn, there is someone who has it worse than you.  There is no place that reminds me of that more than here.  Just this morning I met a mom who's 5 year old daughter (who looked and acted two) has a tumor in her brain that they will never be able to get rid of.  The chemo and the radiation have not even touched it.  They have only caused horrible side effects (some which haven't even reared their ugly heads yet).  The only thing that has helped her live this long so far, is surgery. She has had 6 surgeries so far and it just keeps coming back.  So, I took a full "survivors guilt" filled deep breath and just felt grateful that our situation hasn't come to that. That we are here today.  i love you today.... beautiful today. 


  1. Hang tough will all be over soon. Love you!!!

  2. I love reading your updates and seeing Kayla's smile. So fun and special to have a friend join her. Praying for you right now.

  3. Hugs and love from PA, birds singing goodnight, holding you in our hearts. AuntieAnn

  4. Sending lots of love and good thoughts!!!