We had a great day today! First of all we were able to get discharged around 2 pm this afternoon and are back at the Target House for the weekend with Daddy. Second, we were able to meet Kirstin Trysla from KC. For those of you unaware, the Trysla's were a family we read about on the St Jude website prior to making the decision to come to St Jude's. They have a son, Clayton, who was 7 months old when he was diagnosed with a PNET tumor similar to Avery's. Nikki then tracked them down and asked her if she'd be willing to talk with us about St Jude. She was the sweetest person ever, I mean she had just encountered 2 stalkers (mom & Nikki)and still wanted to talk to me. It was great to hear personal experience from another mom and she helped solidify our decision to take Avery to St Judes. After walking me through her experiences and handing over tons of information she even tracked down phone numbers and followed up with me to make sure we had what we needed. The Trysla's were back at St Jude for a follow up scan (which was clear) and they stopped up to see Avery. We are so lucky to have met them and will continue to follow their progress with Clayton as well.
The weekend plans are low key as Avery is still feeling a bit icky. Hopefully she will perk up a bit by Sunday for the Easter Egg Hunt. Next week, Angie Hinn Schaub is coming to play with us. She thinks she is going to teach me how to crochet.....little nervous about that, still working on mastering the knitting hat skill! We'll see what I can learn! Avery's counts will most likely drop by Wednesday and we'll be stuck in the apt or outside on walks, but away from other people. Good thing is it will finally be nice out to go for walks...good thing too, hospital cafeteria food is not good for your diet when eaten in excess! Neither are Starbucks Dark Cherry Mochas -- thanks Aubrie. I don't even like coffee but for some reason I can drink the heck out of those things. The best news ever is that we have our G infusion at 10 am each day -- much more doable than the 8am they had us at last time....seriously.
Well, I better get back to Jeremy and Avery --
Love
Jenn
So glad to hear all the good news! We are so happy to hear that you met Kristin and Clayton and especially that they got good news about dancing with NED *no evidence of disease* for Clayton. Looking forward to Avery dancing with NED for the rest of her life!
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