We have had many wonderful moments and glimpses of normal over the past week. On the weekend, Phoebe participated in her first ever Easter egg hunt. She was a natural, dropping the colorful eggs into her bucket as she said "egg", over and over again. She was very excited to see all of the other egg hunters and it was so beautiful to see her, just like any other kid, collecting Easter eggs. She sat by herself for quite some time after the excitement wore off, just marveling at her loot.
in the week, while at the hospital, we were treated to a live musical
performance by a local children's band. Phoebe loved it and stood
holding on to one of the St.Jude wagons (which she also loves), bouncing
and bopping to the music. Once again, a beautiful, wonderful sight.
is doing well, acting more and more like a toddler every day. Meal
times are often loud and chaotic, with regular and often shouts of
"more" coming from Phoebe. She loves to eat, and after not doing so for
most of her life, this too is an amazing sight. She has yet to gain any
more weight, which completely baffles me as she appears to eat
constantly, but she moves constantly too so that might explain
things. She is learning from the best, her big sister Mae - who also
never stops moving.
As for the medical side of things, we have
had a few extra trips to the hospital this week. The level of Phoebe's
immuno-suppression was very high on Monday. This drug is used to treat
and prevent the Graft vs. Host Disease that Phoebe had, but too much of
it will suppress Phoebe's immune system and newly developing cells and
that is not a good thing. Like most things, it is a fine balance. We
have been back every day this week to have the level rechecked and it is
still high, but coming down. Until it is back in the range that the
doctors want it, Phoebe is short one drug which is okay with both of us
as giving the daily medications is exhausting and heart breaking for me,
and the least favourite part of both of our days. This setback will
delay our home coming a bit, but as long as we are returning home
healthy and cancer free, it is all right.
So for now, I will
once again, anxiously await the chimerism results for this
week. Perhaps even more so because of the high level of Phoebe's immuno
suppressant. And we will continue to fill our days here in
Memphis. Excited to hear news from the doctors of plans to send us
home. And to more wonderful and "normal" things that await us on our