Days 169 – 176

Super Kids - Maddox won his sister cool
gear at Great America

We are on maintenance. Kennedy’s counts were at 1,000 so she was able to receive treatment yesterday.  Within 12 hours of chemo, the pale chemo-glow with blue bags under her eyes returned and we were reminded how much this all sucks.  Maintenance to both Gene and me has always been symbolic of “ease” but it’s not. We were introduced to a new arsenal of home meds and Kennedy’s aches and pains have returned and it hasn’t even been 24-hours since treatment.  We have 6 more days of steroids and another vincristine dose next Thursday.  Maybe it will get easier?  This last week has been so nice without meds, I think we often kid ourselves that everything is normal, it definitely is not.

Dad getting his face painted

Gene took Kennedy to clinic yesterday and I took Maddox to Great America.  He really has been lost with everything going on and we don’t spend enough one-on-one time with him.  He had a great day and we checked-in with dad and K throughout the day.  It was hard not being there for Kennedy but I needed to be there for Maddox; he is so often overlooked.  After clinic, dad took Kennedy to Stir Crazy, one of her now favorite restaurants.  He had bigger plans for both of them but Kennedy was just too tired to go to Build-a-Bear or Color Me Mine so she went home to sleep.

From Kennedy:

My favorite doctor is Dr. Manera and Dr. Sarvita, Dr. Heminway too.  I went to sleep yesterday.   I painted daddy’s face.