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.

Saturday, May 28, 2011

Making strides

With each day that passes, Phoebe gets a little bit better and her white blood cell count climbs a little higher.  It is .6 today and her neutropolys are .06.  Slow and steady.  Although cautiously optimistic, it seems that we have turned a corner and are now on a slightly straighter road.  Phoebe's liver enzymes are starting to drop closer to normal, the doctors are starting to wean her off of her pain medications, and although she is still on TPN, she is allowed to have some formula if she wants. So far she hasn't shown any interest in eating but like everything else it will take some time.  We still have a long road ahead of us, but now it seems that with the magical white cells on board, anything is possible.  

Phoebe had a new picc (peripherally inserted central catheter) put in on Thursday.  This time it is in her arm and tunnels towards her chest and heart.  They were unable to put a central line in due to the infection, so although they would like to replace the picc with a central line at some point, we are hoping that the picc will last and maybe even be her fourth and final line.  With the picc line in now, Phoebe is avoiding the sometimes 3 pokes per day that she was getting before.

She is still on antibiotics, but has been fever free for the past two days.  She does have a rash on her skin, which the doctors say may be hyper-acute GVHD, or just a reaction to the countless medications and blood products that she is receiving.  Phoebe typically reacts to everything so it is difficult for the doctors to definitively say what is causing the rash.  To be on the safe side, and in case it is GVHD, they have started her on steroids.  The steroids suppress the immune system, and work to fight the GVHD.  Although we want to see some GVHD in order to also have the graft versus Leukemia effect, when it comes on as quickly as it may be with Phoebe, they want to make sure that they can keep it under control. 

Once Phoebe's white blood cell count reaches 1.0, and her neutropolys are 0.5, as long as she is well she will be able to leave her isolation room and visit with her big sister in the family room outside the BMT unit.  Mae asks every day when she will see Phoebe and she has even started to ask "How's Phoebe's day is?."   She also points to strangers on the street and says "that man can't go see Phoebe".  It is very difficult to explain why she isn't able to see her baby sister, and although she is still very young, I know that she worries about Phoebe and wants to protect her.  Every day we get closer to that big 1.0 and that extra special reunion. 

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