On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Wednesday, April 11, 2012

A little bit of normal ...

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. 

Earlier 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. 

Phoebe 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 return.

1 comment:

  1. As much as I will miss you and the girls, I will be crying tears of JOY as you finally make your way home. Home is where you belong so you all can move on from this and live life under your own roof! I
    love watching Phoebe eat. She is just precious!