Chemo day 3 - The start of Horse ATG (Sat. Apr 5th)

Finished two days of cytoxan chemo. This is one that causes nausea, vomiting, diarrhea, and hair loss. In general, Sam did ok during these days. Definitely some vomitting each day and now some diarrhea. They aren't sure if her c diff is back or if it's from the chemo. If it's chemo related, it should clear up in a day. If c diff , it won't but she is already on an antibiotic for that. The hair loss typically takes place 3 to 6 weeks from when the medication is given. Baba and I cut some of her hair shorter in the back yesterday but are moving more slowly with the hair cutting. For some reason, mentally it's hard for us to pull the trigger on this one. I think its because it will be such an obvious difference for us. Sam has not been herself for some time now but losing all her hair will make this appearance even more striking for us. In our rational minds though, we know it's only hair and such a small thing given all she's been put through!

Today we start ATG chemo for four days. This is actually a horse serum. She will get this over six hours with nurses checking vitals every 15 minutes the first hour and then half hour after that. This is the "nasty" one that can cause high fevers, chills, shakes, itching/ hives, and sometimes seizures. They give it slowly and pre medicate with Benadryl, Tylenol, and a strong steroid. These are supposed to help ward off some of these symptoms but are matched with their own side effects. Our transplant doc warned especially that the steroid can make kids feel "great" and better than she has been...OR... Send her into frantic/ rageful states. Perfect for a toddler right ?! We are hopeful with the morphine and Benadryl, she will remain relatively drowsy through most of it.  Fingers crossed!

She will need a red blood transfusion tonight or tomorrow bc hemaglobin is down to 8 and her heart rate is now more elevated, even at rest. The only other current "looming" item is that they aren't sure they have enough "access" with her double lumen picc line and her g tube after the weekend to get all the meds in that they need. Some of them can't be mixed in the same lumen and she's on a continuous pca morohine drip that takes up one line. She will most likely have to be "put under" again and add a second picc line on her other arm:( I wish this would have been done when she was under anesthesia already a few days ago to replace her g tube, but hindsight 's always 20/20. 

This is Sam's current " med sheet". It's pretty ridiculous when we stop  and look at it. It equates to something being given iv or thru her g tube almost constantly round the clock. And to think before February, we had honestly only given this child Tylenol twice and she had never been on an antibiotic in her life....Times are a changin! 

Uncle Kurt heads back to LA today but  Aunt Bex arrives Monday night and Kurt will return Wednesday before Kaedens big day! He is excited to help his sister but obviously nervous  about surgery too. It will be a big day and we are so thankful to have these extra loving arms (and of course our baba:)  to divide between both our babies:)  

Another thank you again to all of you reaching out, leaving comments, organizing food drop offs, fostering our cats (Andy:), taking kaeden on special play dates, sending gifts for both kiddos, and always checking in. I  think our next to do will be to start a gratitude corner page for the website to make sure to personally thank everyone who has helped us in so many ways so far. This will also be a great way for us to look back and start our thank you notes  in the future!