Day 9

Another long day.  We were up a lot last night, including a short play period at 4:30am so we were all tired.  We woke up K a half hour before we needed to leave for our appointment, around 8am.  Kennedy didn’t want to take her medicine and we successfully forced one teaspoon of chocolate ice cream filled with her steroid.

When we got to the outpatient center, they had to re-access Kennedy’s port and she did surprisingly well.  They started by taking blood and noted that her platelets were low again and would need another transfusion.  This meant we would be at the center for a good portion of the day.

The sucky part was that Kennedy was not allowed any food or drink all day, with the exception of her medicine in the morning.  She was starved and let us know how she felt. 

They did the spinal tap and infusion around 11:30.  Gene got weak on his feet when K unexpectedly jerked while the doctor was working.  What a scary procedure but thankfully all went well.  It took a half hour for K to recover.  We learned that we would likely be doing more spinal infusions in week to come.

While Kennedy was recovering from the anesthesia, Gene ran to the store to get Kennedy food so she could finally eat.  She was starved and daddy was a hero.

Post spinal they gave Kennedy her vincristine chemo and transfusion of platelets.  We finally left around 3pm.

Kennedy slept when we got home for a few hours.  Auntie Julie flew in from Arizona to help and did a great job keeping Maddox busy.  Unfortunately, Kennedy was not feeling well enough to visit with her auntie.  Auntie Julie took Maddox to grandmas house for the night and Kennedy stayed in our bed for the rest of the evening.  We even brought her dinner in bed – her favorite, edamame and miso soup.

The hardest part of these first few months will likely be the fact that Kennedy is Neutropenic. This means she has barely any white blood cells so does not have the ability to fight off infection.  We don’t want to keep her isolated but it seems that when family comes to visit, they want to kiss her and pet her like a puppy.  I’m sure we’ll figure it out so she is happy but safe.

The neighborhood kids sent some great cards over today to brighten Kennedy’s spirit. She also got a video from an out of town friend.  I don’t think Kennedy understands what all the fuss is about but we appreciate all the well wishes.