Days 148-158

K brushing her new fuzz

 We have been celebrating being hospital-free the last 2-weeks and living what seems like a normal life.    Well it seems normal until Kennedy wants to go swimming or to a waterpark and then we are reminded how restricted the next 2 years will be.  If that’s the worst of it, we’ll be happy.

K and her little cousin Katya

This last week we went to a birthday party, Sofia’s family party, watched fireworks, went boating, had playdates and created our own water park in the back yard with a cool new waterslide.  It’s been busy and fun and we are lucky and thankful for it to be like this.  This is a link to her playdate with Sofia and Ella, put together by Ella’s wonderful mom Kate:  http://clients.316photos.com/Other/Animoto-Private/14728855_VWjj9D#!i=1949771033&k=34xRcWG

Kennedy’s hair is starting to grow back.  She still looks blonde and may be curly, we will wait and see.  Ella’s hair grew back the exact same color and looked full and long.  Note the key word “looked” – 5 months before she is finished with treatment, half of it fell out again and it has been devastating for the family.  Losing hair twice isn’t typical but it can happen and is just yet another thing we are preparing K for…just in case.

On the boat to watch fireworks

Kennedy starts maintenance on July 19^th.  Maintenance may sound like a benign word but her first day of maintenance includes a spinal infusion of methotrexate, a Vincristine port infusion followed by a week of Dex (steroid).  A week later is yet another infusion of Vincristine.  I have loaded her maintenance chemo schedule in my work calendar, her last day of treatment will be July 30, 2014, a day I long for.

Mom and K in our backyard waterpark

Mom and dad are doing okay.  We have adopted the word “fine”.  Everything is “fine” when anyone asks because we don’t know what else to say.  Some days are “fine”, some days are awful and some days we are just numb.  Some days are great and we forget  what is going on but our bald little cherub hops in to bed with us and we our reminded of the gravity of the situation and are thankful she is here with us – living life to the fullest.