Today we started the second cycle of maintenance (she will have 7 total over the next year and half). She had a spinal tap and we are upping one of her chemo doses and we will be starting the dreaded steroid again for the next week. As we currently sit in the hospital and Byrdie's waking up from anesthesia, I reflect on the last three months. So far Byrdie has had an amazing first three months and first cycle of maintenance. She takes daily at home chemo and once a week she doubles up on that chemo. We feel like we are finally vacationing at the hospital versus living here, which has been a true blessing to get a small piece of our life back.
Byrdie started school in August and is totally thriving. She went to her first birthday party in over a year and could not have been happier (thanks Hayde for that awesome mermaid wig!!!). Byrdie was also the official assistant coach of her sister's soccer team (huge shout out to the best soccer family ever!).
Next up, we plan to celebrate Thanksgiving this week As all of her dad's family has flown in to DFW to rally around her for our first really big holiday after getting out of the hospital since diagnosis. She cannot wait to see her cousins for the first time in over a year! We will also be going to the Nutcracker, which I think Byrdie will absolutely love this weekend. She looks forward to decorating the house for the holidays, something that she couldn't enjoy last year at this time. We are also expecting to go to Naples Florida, and travel with Byrdie for the very first time since diagnosis over new years. We know there are some risks with traveling, but the doctors have given us the OK as long as we were remain within one hour of a children's Hospital within an oncology unit. Her oncologist was a fellow w the head oncologist at fort Myers so we find some comfort in that, but we hope never to meet him!
As we approach the 1 year mark of Byrdie's diagnosis, all the emotions are coming out. We know this will be very tough every year but we do hope it gets easier as we don't want a dark cloud over all of our holidays. Please send prayers for us!
As always, we are so thankful to this community for all the love and support over the last year!
Alex and Jenna
