Almost that time... again.

As 11/11/13 (2 years from that first damn MRI) slipped away, I can't really say that I feel any calmer.  Kayla's next MRI is only a week away now. So how can I be calm? How can I breathe when I feel this constant flow of uncertainty? It's in the cool autumn air. Its watching the kids trick-or-treat and having flashbacks of when I knew something was wrong, but didn't know what... yet.

I notice that I watch her a little closer when she's about to have scans.  I look for any signs of change.  So far the only changes I can see are the obvious ones.  The lack of growth in the past year. One teeny tiny centimeter.  Yep! That's it.  Thank you Radiation. Kayla's ears ring a lot when she is in noisy places.  Of course, she has a very hard time concentrating when the ringing is going on.  I notice that her short term memory is starting to get worse and worse.  My once overly efficient and organized child is now replaced with one that is forgetting the simplest things on a daily basis now. No matter what sticky notes she writes herself, it's happening.  The dry erase calendar has helped, but it's still not entirely enough. My heart breaks for her when I watch her get so frustrated with herself. She smacks herself in the head over and over and often cries. She hates it when she forgets things. Chemo brain is what it's often called.  I think the chemo mixed with 31 rounds of full brain and spine radiation is what it is.

This month was a busy one.  Kayla changed schools.  She still loves her old school.  It was such a source of strength for us and love when the walls came crashing down around us.  Now both of the kids are at the same school and boy is that easier!!! Kayla is making lots of friends but misses her old ones too.  I keep reminding her, they are just around the corner!!! 

Next Tuesday Kayla and Denny will make the trip out to St. Jude once again.  This will be her 1 yr 3 month check up post treatment.  Our scheduling team has booked Kayla solid.

Brain MRI, Functional MRI, Lumbar Puncture, Pulmonary, Audiology, Echo/EKG, Endocrine, Psychology, Physical Therapy and ... results. 

Denny asked me again today what's better for me? Being here at home and staying busy with work or being there?  Neither. Three months later, we get to do it again. But she's ALIVE!!!!! Thank you to St. Jude, Dr. Gajjar (oncologist), Dr. Pai (radiologist), Dr. Yamaguchi (pediatrician), & Dr. Gupta (neurosurgeon). 

The plan is for Den and Kayla to fly home next Friday night and the next morning we will do our St. Jude walk in San Francisco.  Have I mentioned it yet? If not, let me fill you in! 

Click here to go directly to Kayla's Team Page

We walk. To help her live.

Kayla Rose

 

November 23, 2013

St. Jude Give thanks. Walk. - San Francisco

Location:

San Francisco Zoo

Sloat Blvd. & the Great Highway

San Francisco, CA

94132

Event schedule:

Registration begins at 7AM followed by the opening ceremony. The walk begins at 8AM. Make sure everyone has checked in and registered.

So, come and join us if you can!!!! I am going to bring a bunch of Kayla Rose T-Shirts and wrist bands to give to anyone who walks with us.  If you can't make it to the walk, but want to help, you can!  Either donate to Kayla's team (click on that link above) or even start a team of your own and ask your friends/families to help out. There are still 11 days to go! This will be the very first time the San Francisco Zoo has partnered up with St. Jude.  I hope it's very successful.  There will be other patient families there as well. I know it would mean a lot to Kayla to have as many walkers join us as possible.  It's early. I know!  They want us finished with our walk by the time the zoo opens at 10:00. I believe they are giving zoo passes out to anyone who has raised $35 or more!  Dress warm.

HUG YOUR LOVED ONES.   More to come soon!