Chat

Day 1, round 3

Good evening everyone, I hope you all had lovely dinners together as families! Ada has taken day 1 as a true champion, she spent the entire day playing games with everyone who came by and trying to catapult herself off the bed… so even though she’s on some pretty strong meds now she had a great time, my heart not so much😱 One huge positive is that she hasn’t started vomiting again, I think over the last cycles we’ve found a great mix of meds and alternative methods to help. On that note, I’m starting to get a bit of a rep for having alternative healing practices that work well😂 Another big positive is that Tim was allowed to join us once we were moved out of day clinic to the ward, so we can have our usual silent dinners in pitch black, a little bonding tradition❤ Tomorrow is a big one, Ada will start her experimental stage of treatment. The mix of chemo drugs specifically target all the neuroblastoma cells and that can be rather painful, and because Ada has so much everywhere we are expecting a great deal of pain. The pain team will be on board first thing in the morning, and she will be hooked up to two pretty heavy duty pain pumps from the start, with more options if needed. We are steeling ourselves with the knowledge this is the best way forward for Ada, so tomorrow our battle is to stay strong for her as she is so sensitive to our moods and reactions. We were hoping for a restful night but her heart rate is a bit high once again so it means more monitoring than usual, but we’ll make the best of what we can get. I know that at the moment everyone feels a bit helpless because we are all trying to work out our new normal with COVID-19, but messages, phone calls, dad jokes (Carl🙋‍♀️) and memes all help so much more than you will ever know, so keep them coming when you have a spare moment💜 Wishing you all a good night🌻

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