Day 26

K and Sofia celebrating by making cakes

Today was a hard day for me.  Gene and I both went to work and K stayed with Gala (our nanny).  I felt like a crying machine, anything and everything set me off.  Thankfully I hid in my office all day so no one saw what a mess I was.

Staying positive is a must at home but suddenly I’m scared.  I’m scared that she’ll get a bacterial infection.  I’m scared that the chemo could cause damage to her heart or brain.  I’m scared that I’ll be working 4-days a week and miss her like crazy.  I’m scared I’ll regret going to work instead of spending every second with her.  I’m scared that after 2 years and 3 months, this wicked disease could come back.  I’m scared that if it did come back, the next course of treatment is most successful with a bone marrow donation from a sibling.  Only 30% of sibling bone marrow is a match and what if Maddox wouldn’t be a match?  I’m scared because they say of the 90% that are “cured”, 25% - 40% go on to lead a long healthy life.  Well, what about the other 60 – 75%? I know, “what if, what if, what if”.  A lot of “what ifs” can change anyone’s world but most have not been faced with such scary statistics.  This pit in my gut just won’t go away today.  I know I must sound crazy but I’m so damn scared.

Bath time goofiness

Coming home reminds me of how much she has changed.  She doesn’t look the same anymore.  Her face is swollen, her tummy looks pregnant and her hair is half gone.  It doesn’t matter, I lover her the same, if not more now than ever.  It’s nice that Kennedy is still Kennedy despite her new drug-induced appearance.  She’s a little more introverted, but still her sweet self.  I just hope this damn treatment doesn’t hurt her soul because it’s killing mine.

After work, K had her girlfriend Sofia over.   She really shouldn’t be having guests over but she NEEDS it.  She needs to be a kid.  Kennedy missed Sofia’s birthday party on Saturday but got to celebrate her real birthday today at our private party.  The girls made bracelets, cakes, brownies and shrinky-dinks.

Maddox the banker

After Sofia left, I gave Kennedy her first reading lesson.  A friend at work brought me a home-school book for reading and lesson one went great.  I will take turns with Molly and Gene teaching Kennedy how to read so she is ready for kindergarten.  I’m not sure if she’ll start on time but I want the education aspect of the class to be a breeze.  She’ll have a hard enough time with her shaky hands, shiny head and exhaustion. 

After our lesson I scrubbed my bathtub and gave K a nice 40-minute bath.  While she was having a great time in the bath, Maddox got his reading done and entertained both of us.  When he was done reading, he got dressed like dad and pretended to be a banker going to work. 

For feeling so down today, the day was actually a good one.  Kennedy was happy and giggly which made me feel a bit better.  I am now utterly exhausted after my full day of work and playtime.   I’m back to work tomorrow and dad will spend the day with K.  Off to bed, hopefully tomorrow I’ll be as cheery as K and a bit more positive.