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.

Monday, February 13, 2012

All good news ...

All good news ... Phoebe is still tube free, but has yet to gain any weight.  She has since discovered  cheese though, so it shouldn't be too long.  She is also enjoying a plethora of snacks and other food; including sweet potato, carrots, goldfish, and mandarin oranges - add all of this to the cheddar cheese and I think we have a theme.  Phoebe likes orange food.  We are hoping the tube will remain out, but we also don't want Phoebe to lose anymore weight as she is already quite small, so we are following her lead. 

Today we had a visit to the hospital, Phoebe's blood was taken and everything looks very good.  She was also given her weekly dose of immunoglobulin - a drug that helps to boost the immune system.  This is something that the body produces naturally and Phoebe's level was high today, so she may not need it anymore.  Good news.  Her liver enzymes are also on their way down, and all of her electrolytes are normal so the food she is eating is working to keep her healthy.  We are relieved and hopeful and apart from the ongoing and unresolved issue of Phoebe's eyes, all is very good.

Phoebe's blood is now only being monitored weekly - on Mondays with the chimerism tests, and her doctor mentioned that this is part of getting things ready to send Phoebe home.  That and the fact that it has been many weeks before there have been any issues with Phoebe's blood work - her new cells are working hard.  The thought of going home sends me into a bit of a panic which he acknowledged, commenting on how it might be more difficult to get me ready for home than it will be Phoebe.  We feel very safe here at St. Jude but home will still be a welcome sight.

For now, we will continue to take things as they come.  One day at a time.  We will keep surrounding Phoebe with as much food as possible in the hopes that she will eat it and put some meat on her little bones.  And we will simply enjoy this time.

Oh, and for the first time today, all by herself - Phoebe pulled herself up to a standing position.  Go Phoebe go ...

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