As you all know, this blog is really Jeff’s work, however Jeff has been quite busy lately so I thought
I'd share a funny story from the weekend and a quick update on how things are going.
Ellie continues to march through maintenance like a super star. Her counts have been fluctuating a bit, but so far on the 125% dose of chemo are staying within therapeutic range. Last week she had her monthly back poke of chemo and thankfully tonight we gave her the last dose of steroids for the month. She is much more aware now of what's going on compared to a year ago (or at least she vocalizes it more). Each week she asks if she is going to the "sleeping room" or just regular chemo, and for her the highlight of going to the "sleeping room" is that she gets to leave in a wheelchair that Mommy pushes. Thankfully despite all of the construction at LPCH, they still let me be with her when she goes to sleep and come back in before she wakes up. We are so lucky to have so many wonderful "friends" (nurses) we see on a weekly basis at LPCH - they truly make our lives so much easier.
Timmy also had to have a procedure last week. He had his adenoids removed and a new set of ear tubes placed. Hopefully this will set him up for an uneventful winter cold season. Like his sister, he continues to amaze Jeff and I and was adamant about going to school the day after his adenoid removal and was full of energy.
Pinkalicious has been one of our favorite nighttime story
books since Ellie received a pair of hand me down pinkalicious jammies from a
friend a little while back. Both kids know the story by heart and like to take
turns “reading” it to me. For those of you who don’t know the story,
Pinkalicious is a little girl who makes pink cupcakes with her mom and then eats
so many she turns pink and has to eat green food to turn back to normal. So, a while back I
had promised the kids we would make pinkalicious and of course bluealicious (for
Timmy) cupcakes. We made the cupcakes over the weekend and I let the kids frost
them by themselves, i.e. they ate pink and blue cream cheese frosting by the spoonful while I tried to spread some on each cupcake. After dinner that night, I offered each a cupcake for
dessert, but both only took one bite and asked me to save the rest for
the morning. Ellie isn’t that into sweets so this wasn’t surprising, but I
don’t think I have ever seen Timmy turn down something sweet. I didn’t
think much about it and figured he had had his fill on the frosting. Sunday
morning, they woke up calling me and when I walked into their room and turned
the light on Timmy exclaimed “Ellie you are not pink and I’m not blue!” and they
both squealed with delight…who knew 3 year olds take books so seriously!!
We are so thankful to be where we are 477 days later. This time last year we were preparing to start Ellie's 4 mandatory hospital stays for high dose chemo. Having both kids get to wake up in their room together is such a blessing. Thank you for the continued prayers and support throughout this journey.
xoxo
Polly and Jeff
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