May 7

My apologies everyone for the delay in updating.  It's been extremely hard for me to motivate this week.  All I seem to have energy for is going to the hospital and being with my little family.  I am just plain tired and no amount of coffee is helping the situation.  I have mental exhaustion.  I haven't been able to work in the evenings, haven't been responding to email or texts, I am having a hard time cooking, can't exercise, can't read - I have been just absent.


The week went well for Madelyn though and she is feeling great.  I've had to give periodic dosing of Zofran (for nausea) and Oxycodone (for pain), but she has been in good spirits and has had bountiful amounts of energy.  Wednesday we went to the hospital late for a 2:00pm Physical Therapy appointment and then 3:30pm infusion.  The chemo was a quick IV push (chemo in a syringe hand pushed via her port) and then one hour of fluids.  Wednesday was beautiful, warm and sunny.  We pulled the blankets out and had a picnic.  I even got sunburned!  (Can't believe I did that...).


Thursday and Friday we were at the hospital by 9:00am for her IV push and one hour of fluids.  She stayed accessed all week.  So this means, we went home each day with the needle remaining in and the tube hanging down.  The tube hangs only out to about her belly button, but it all just feels funny and is uncomfortable.  She REALLY does not like it, but she changed her mind and decided to stay accessed so as not to be poked everyday.  The accessing is still a stressful time for her.


Each day Madelyn has been doing great; she's not even taking a nap!  This is always an indicator of how she is feeling.  Nap means tired and/or not feeling good.  No nap = let's party!  Since she was about 2 years old (hmmm.... if not even earlier) she has always asked to take a nap.  We've never really had to coax her to sleep she just either asked or put herself to bed.  Madelyn can sleep anywhere.  I attribute this to being drug around the world and back again continuously starting at 3 months old.


Yesterday after the hospital we went to the zoo for two hours, her favorite restaurant and then played around outside for quite awhile.  This will be her last time going out to eat for awhile.  Starting about tomorrow or Monday her counts are going to start tanking.  We'll see where she's at on Tuesday, but I am expecting lower energy soon and possible blood transfusions.  It is not unusual with this type of chemo.


So people.  We are in the HOME STRETCH!!  Long Term Maintenance here we come!!  One more week of daily hospital visits and then comes the long wait for her counts to rebound.  Once they rebound (ANC above 750) we start Long Term Maintenance and we can GO HOME!!  We are all ready to be back in Anacortes...