Let Freedom Ring

July 3, 2014

It's been a busy week.  Tuesday we went to our annual block party, where we stayed up late and watch some magnificent aerial fireworks ... and those fountain ones too.  Wednesday, I booked tickets to see the Utah symphony at Thanksgiving Point's outdoor amphitheater.  The girls were mortified that I started tearing up at the Star-Spangled Banner.  I felt a flood of gratitude and love for our country.  The tears really started flowing when they announced the symphony would play the various military corps' songs, and asked those who have served and those family members of those who have served to stand during the rendition of their branch's song.  The Army Goes Rolling Along began, and Charly (in loud voice) asked "Why are you crying mom?" Sean proudly stood with a few others when Anchor's Aweigh played.  The girls' were less than impressed with the concert, but enjoyed the fireworks afterwards.  Thankfully they brought friends to keep them entertained.

Today was Charly's monthly chemo visit.  They are still watching her bilirubin levels closely.  A couple months ago, she got up to a 4.  It was high enough, that they decided to check her blood again half-way through the month. It dropped to a high 2.  At the monthly appointment two weeks later, she was back up to a 3.3.  Today, they told me they stop chemo if she gets up to a 5, so we waited to get her IV chemo until her bilirubin results came back. Today, she's at a 3.

Her ANC (immunity level based on her white blood cell count) was 1700, and is higher than they want.  Normally, because of these numbers they'd increase the chemo, but because of the higher bilirubin, they decided to just keep her nightly doses the same.  I'm relieved.  It was just an extra 1/2 pill every night, but the 3 months she was on a higher dose over Nov - Jan, Charly seemed to be more run down, she lost a lot of hair, and then she went neutropenic and had to be hospitalized.  I am totally fine with not increasing her chemo.

The best news of today - Dr. Barnette asked me, "So, have you been told your end date yet?"  I told him we hadn't been told an exact date, but I was figuring it would be around November.  Dr. Barnette told me he could tell me the exact date of her last chemo and left to get her file.  When he returned, he announced her last dose of  chemo would be October 4th - "That's a big 10-4 good buddy!" said our nurse when she overheard the date.

It's so exciting to hear how close "the end" is.  October 4th is a Saturday.  Dr. Maese explained that her last IV chemo visit would be 3 weeks before in September.  But we keep giving her the nightly chemo pills until October 4th.  After we discontinue chemo, we will still go to Primary's for monthly check-ups for a while.  Then they will decrease her check-ups to every other month, then 6 months, until she is down to an annual check-up.  We'll schedule her to get her port removed before the year ends.  No more rushing to the hospital when she gets a fever!  I know there are statistics that say Charly has a 2% chance of relapse, and a higher probability of developing another cancer later in her life, but I feel like we are almost at the finish line.  No more pills, no more harmful substances being pushed into my baby's body.  FREEDOM!  I am practically dancing as I type this.  Feel free to join with me!