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.

Tuesday, February 28, 2012

Rash, rash go away

The rash is still here ... and it is driving me crazy.  Over the weekend I probably looked at various parts of Phoebe's skin 500 times - wondering if the rash was spreading or changing colour.  Our conversations all weekend focused on it.  Was it raised?  Was it splotchier? Better? Worse?  It better go away soon, or I might just lose my mind and cause Jon to lose his too.

Yesterday afternoon when our doctors saw the rash again, for the first time since Friday, they commented that they were "pleased" with what they saw.  This brings me a small amount of comfort.  The concern right now is in this GVHD getting worse and possibly spreading to the rest of Phoebe's skin, or her liver or gut - the other places it commonly affects.  Right now it is somewhat stable, and possibly, even a bit better.  If the cream will in fact clear it completely, we should see real improvement over the next few days.  If the cream is not effective in clearing it then Phoebe needs oral steroids to in her doctor's words - put out the fire, that is causing the gvhd, and then 4-6 months of immuno-suppression to ensure the fire remains calm.  We are really hoping and praying that the cream is effective as the alternative treatment will suppress Phoebe's new and developing immune system and delay a return home.

We are so close to home and to putting our lives back to some kind of normal, that this setback is frustrating. But, it is just a setback and we will eventually make it home.  Looking on the bright side, to have this (hopefully) small amount  of GVHD is a good thing in the fight against Phoebe's Leukemia.  Her new immune system is proving to be very active and  the hope is that while it is causing some problems in her body with the GVHD, it is also giving any stubborn and cowardly Leukemia cells a kick to the curb and a big Glasgow kiss.  Never to be seen again.

Phoebe's blood work looked good today, apart from mysteriously high liver enzymes that the doctors are trying to figure out, everything is very stable.  They have stopped one drug that they think may be the cause. We are taking things one day at a time, applying cream diligently, and hoping for continued improvement.

We are day +89 today - almost in the 90's.  Miss Phoebe Rose has come so far that we are not going to let this rash get us down.

1 comment:

  1. Hang in there! Go Phoebe. I hope this rash will end very soon, take care, Sophie xx