It has been awhile..

May 9th, 2013
Gracie's 5th Birthday!

Thursday
Unit 1
Weight: started at 14.6 kgs and peaked at 13.25 kgs
Nurses: Megan/Kevin/Renee/Meghan/Laura

So its been awhile since I could put our experience into words.  It turns out a healthy kid can be more demanding than a sick kid.  After the great time away and getting to be a family of 5, we returned to the hospital, on Monday, and spent the day in Clinic.  Now clinic is set up to get the Chemo drugs started before they admit you to Unit 1, it allows nurses to be more effective.  We got there at 9:00 am to see the Oncologist and then they got us signed in and start with blood work to make sure the counts are up.  At 10:30 am, we found out the counts are not quite as high as hoped, but high enough to start. However, as was common before, we need to wait on the drugs from the pharmacy, in this case potassium enriched saline for pre-hydration.  To make a long day a short story, we finally get things started about 4:00 pm so most of the Chemo will happen on Unit 1, so much for a smooth start.

The good news is that even though you have a 5 minute breakdown knowing that we were back on Unit 1 and not RMH, your spirits are amazingly high and you ask to get back into hospital PJ's.  These are the stylish yellow and white striped ones, which resemble the Bananas in Pajamas show, which your sisters think are so cool.  Anyways, oral meds are a breeze, you help the nurses find and hook up your lumen's all the time, you pride yourself knowing "no more pokes".  We spend days playing match games, play-doh, reading books and sit down "walking around the unit".  That's right you love to walk around, to the kitchen, get movies, see fish or just go out walking.  All the nurses can't believe the change in your demeanor and attitude, its really a 180 degree swing for you.  You are eating and drinking like an athlete.  After your first LP, you sit down and devour 2 bagels and over 250 ml of chocolate milk in a single sitting.  To add to our optimism your neutrphils on Tuesday have doubled since Monday, a huge bonus the doctors can't really explain.

However, the huge hit around here is "Chemo Elmo" who was developed on Tuesday while you had your LP.  The management team I work with at TELUS, brought you a huge 40" tall Elmo stuffie that the nurses have outfitted with a central line, hospital PJ's, nasal prongs and hospital ID band (It says CHEMO ELMO).  You awake from the procedure on Tuesday and start to giggle at Elmo's appearance and tell everybody about him, you particularly love how he has a central line like you.  There has been a non-stop, stream of nurses, doctors and some patients to come see this new friend of ours.  He has also evolved as various people visit, he now wears the infamous Blue Chemo smock, safety glasses, rubber gloves and holds a Syringe.

Poppa arrived Wednesday to substitute for your mom this week, as she assists the girls with dance and celebrates Gracie's birthday.  He can't believe the change either on Wednesday but with the good comes the bad.  Thursday morning we start re-living the rage that comes with fasting and steroids as our morning starts at 5:30 am screaming for a bagel and never really return to sleep.  Enhancing the mood swings today is the anxiety of another LP, for some reason you forget how non-eventful they are for you.  You stress over pokes and sleep medicine but after the procedure you are back to calm K, eating 3 hot dogs, 1/2 a bagel and some chocolate milk.  As the day goes on you tire out, but refuse to sleep, again combined with the steroid rage we have some dark moments.

There is hope though for tomorrow, you could be free of IV's and may get a day pass to get outside and get fresh air.  I should mention that late Wednesday we learned your latest viral test was not negative as we had been told and so you are back on isolation and stuck in your room.  Building on that and our lack of mouth sores so far means we could be discharged as soon as Saturday.  The plan is to spend a few days locally to make sure all free and clear for mouth sores, but than we even aspire to travel home to Medicine Hat.  Not getting too excited yet, but the rise we got out of being a family again has driven the importance we all play in keeping each other motivated.

As always your courage and strength carry me, you are my Hero!

Love Dad