Friday was Cytoxin day. Our biggest day of medication. We had to have lots of water to start this one. Haven was ready and woke me up at 6am and immediately asked for her water. She had 4 bottles (adult size) by the time we go to the hospital at 9am. I was amazed at that she could even drink that much but she knew the doctors told her she had to. One thing Haven is awesome at is following what the doctors say and taking her medication. We got in to the hospital and they were overly amazed at how filled her diaper was and she was proud to show it off.
They were able to start her chemo about 30 minutes after we arrived. This takes an hour to administer. Then there is about 3 hours of Potassium Chloride and then removal of the "butterfly". Which Haven did not want taken out, she believed it helped her sleep better.
This is when they were removing the butterfly. I know Haven would be upset if anyone saw this so I had to censor some of it! The butterfly was in there pretty good, didn't want to come out.
She did pretty well today. They gave us a prescription to help with vomiting. We started noticing she was getting dark circles around her eyes and you can see her hairline changing in the photo. We also noted that she has gained 3 lbs this week. So we're kinda freaked out about that.
Drive home dad sat in the back with her incase there were any problems and I drove as fast as I could (I don't like to speed) and we got her home and had her rest for a while. Honestly, I'm trying to remember and I don't know what else we did. I think I went to sleep early....Oh I did. Then she woke me up at 1:45am to change her diaper and she stayed up until 4:30am watching TV. Then we were back up at 7:3o watching cartoons.
She did pretty well thru the night. Had a slight temp and got a little sick but otherwise pretty good.
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
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