I hate to post anything too soon during her actual treatment for fear I will jinx it... Me and my superstitious ways, but this round was the best one yet!! She was so happy the entire time, dancing and playing with the nurses and just being her silly, sassy self!! I really think they would have liked to kick us out of the ICU but with that medicine and Addie's unpredictable ways they were stuck with us!! Addie brings some excitement to the ICU both good and bad!!!
After Addie's onset of angioedema, we enjoyed a days rest with no infusion and no shot and luckily her swelling subsided after about 24 hours! She woke up the following morning with normal eyes and lips :). They started her back up that day (weds) at a half dose of GM-CSF (shot) and a full dose of the antibody and she tolerated it wonderfully! It was the first infusion she had that she did NOT run a high-grade fever and the fever stayed away the rest of the treatment... Praise Jesus!!
She has responded differently each time to this stuff and gives us a new side effect each time... I sit in anxiety basically the entire time the infusion runs and thank God each day it is off and has made it through! Praise Jesus that she has made it through three rounds!! We are over half done!!!! Thank you all for praying us through and walking with us through this journey! Addie continues to be the strongest, bravest girl I know... I can't wait to tell her someday how she kicked the day lights out of Naughty Randall... He didn't stand a chance!
Our next round is the big dog, the nasty one!! Luckily, it is the last time Addie will have to face both IL-2 and ch 14.18!!! That two week round will start in about 2 weeks! Addie will also have a MIBG scan and bone marrow biopsy next week to ensure everything remains clear! Scanxiety is already in full force... Those scans have to remain clear the rest of her life or else her path will be very dismal! This cancer doesn't reoccur and let you live, especially not the type Addie has! Please continue to pray that my girl will be cancer free for an eternity!! That she will live to tell about how Jesus Christ and an amazing team of doctors and nurses saved her life!!
Thank you Team Addie, your love and support is unbelievable!!
She LOVED this ukulele... couldn't get enough of it!! She just loves art and music therapy, so thankful for those programs.
Whenever she hears certain Christian songs this is how she performs... Seriously MELTS my heart. My sister was able to get this priceless video because in the past she refuses to let me video her when she is singing like this. She is worshiping our God... so AMAZING!!!
And then a little Beyonce... talk about a swing! Haha!
Just being her silly self, using adhesive from her stickers to make boogers!
Emma really missed her big sissy!
