Day 64

So here I am, back where I started the blog – sitting on the sleeping bench in Kennedy’s room at Loyola.  Kennedy almost didn’t have treatment because her counts were very low and she is back to being borderline neutropenic. 

Gene took Kennedy to clinic today and said it was very busy.  Many of the regular nurses weren’t there and the wait was longer than usual because everything was backed up, including pharmacy and lab.  Kennedy didn’t cry or scream when they accessed her port though she said it still hurt, just not as bad.  They took Kennedy’s blood and the initial counts came back around 400.  If the final numbers came back at the 400 level, they would need to send Kennedy home until her ANC went over 500.  Thankfully the final counts came in at 544 so they were able to start treatment.  

Dr. Manera is off for the rest of the month so Kennedy had Dr. Sarvita today.  First came the spinal chemo infusion.  Instead of our usual nurse administering the anesthesia, a doctor Gene had never met came in to hook Kennedy up.  Apparently she washed her hands but then proceeded to hook K up without gloves, Gene flipped and she put them on.  You think this would be a standard thing in the chemo ward with kids having low immune systems right?  Then came the actual procedure.  It took 2 pokes to get to the spinal fluid because the first one was dry – Gene said he could barely stand for the 2^nd one.  

After the procedure, K and dad had lunch at clinic and were admitted to the hospital.  K kept dad busy with a ton of art projects, trips to the playroom and potty breaks (hydration pre-chemo).  I came to the hospital around 6 and Gene went home.  Gene was greeted by Aunt Joanne and Uncle Jerry who brought him a fabulous holiday feast (thank you!).  

Kennedy started the dex and zofran (steroid and anti-nausea meds) around 6:30 and the 24-hour methotrexate drip around 7.  We still have the three hours of fasting (2 hours before and 1 hour after) for her 6MP so we worked that pill in around 8:30 and concluded the night with a huge bag of popcorn, string cheese and cucumbers (welcome back steroids!).  We made more art projects, skyped with dad at home and also skyped with Maddox, Anthony, Emma, Angela and Chris at Maddox’s sleepover.  We had a very filling evening.

I did notice Kennedy has a bit of a stuffy nose and seems to be coming down with a cold.  Hopefully it stays benign and we go home on Saturday.  The cold could be the culprit of the low ANC, I just hope the chemo doesn’t knock her counts even lower.

Her counts today are just a reminder of how fragile her health is.  This of course brings me back to my rant the other day - why don't people understand?  It also brings me to Kennedy's birthday in May.  I booked a date for a small (very small) birthday but I have no idea if we can host it.  It is one week after her 3rd admit and a time her counts may be very low.  She said she'd wear a mask but I'm still not so sure it is a good idea.  It is a very delicate balance - she's been through so much and needs to have a birthday experience but her health is so delicate, I'm scared.   I guess we'll just wait and see and if anything, we reschedule it for another time.