Days 159 - 168

K on the diving board at Alene's

What was supposed to be our first day of maintenance was postponed until next week.  Kennedy’s counts weren’t high enough for her first day of maintenance treatment.  She was at 735 and needed to be at 750….so close.  The doctor had the lab do an additional manual count to try and find one extra neutrophil and the next count came back at 733, even lower – no luck.  Today she was scheduled for her spinal Methotrexate, port vincristine and start of oral steroids which means she couldn’t eat until the counts came back.  Everything has been pushed back until next Thursday, count dependent.  This also means July 30, 2014 is no longer her last day of treatment, it is now August 6. Bummed.

On a happy note, she will be chemo free for one full week.  Likely the only week she will have med free for a full 2 years of treatment, so long as her counts stay up.  No 6MP at night either – a clean week to be med free. 

On the tube hanging out with Ella

The past week has been good.  Friday, Gene and I had a date night – woo hoo!  On Saturday, I attended the Tender Heart lunch put on by the Tillman Foundation for parents of chronically and terminally ill kids. This lunch was for moms only and I stood in awe as I heard Kate (Ella’s mom) tell her story of Ella and Leukemia to a room full of more than 100 attendees.  I also heard a lot of heart wrenching stories from parents whose outcome isn’t expected to be as good as Kennedy’s.  Parents that lost a child also spoke.  I felt as if the three of us, Kate, Donnna and I (fellow parents of ALL leukemic children) were the lucky ones.  The highlight of the lunch was getting to meet Bears player and foundation creator, Charles “Peanut” Tillman, who is a magnificent man both on and off the field.  He signed a Bears hat for Gene and a jersey for Ella – thank you Kate for the hat so I didn’t come home empty handed for my big Bears’ fan Gene J

After clinic with Dad - being sent home :(

On Sunday we went boating with Kate, Ella, Josh and Steve.  It was nice because both girls couldn’t go in the water so Kennedy didn’t feel left out (although K was a bit crabby all day).   We did let the girls hang out on the tube at the sandbar so long as they didn’t go in the water. On Tuesday, cousin Alene picked up Kennedy to take her swimming at her house and for a play date.  Most of the family was there and Kennedy was in her glory diving off the diving board and playing with dolls. 

We are looking forward to August 4 when Kennedy receives her Bear Hug from Bear Necessities Pediatric Cancer foundation.  We will be heading out to see Big Time Rush.  We may even get to meet them – Kennedy is ecstatic J