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.

Thursday, June 23, 2011

On the road again ...

Rewind to the beginning of Phoebe's journey ... following her first month of treatment and the long wait for the results of her very first bone marrow aspiration.  It was a crucial test because it would show whether or not Phoebe's cancer was in remission and if the chemotherapy was effective.  I remember sleepless nights and fear.  Just plain fear.  Especially when the preliminary results were misleading.  At the time, the doctors thought that Phoebe's Leukemia had changed type and more tests had to be done.  As usual, Phoebe had her doctors questioning what exactly was going on.

It was late in the evening, back in December when our doctor finally came to see us.  She gave us the good news and immediately following, Phoebe broke into fits of laughter.  She laughed at the doctor, and she laughed at Jon and I.  She laughed non-stop as if she could feel the tension in the room and knew we needed some comic relief.  Relief is exactly what we felt, such a wonderful sense of relief. 

Yesterday Phoebe had another bone marrow aspiration and a skin biopsy.  She also had her PICC line re-inserted.  Everything went well, the line is in, and the bone marrow and skin were sent for testing.  The results of the skin biopsy will take a bit longer, but the preliminary results of Phoebe's bone marrow aspiration show that it is free and clear of any Leukemia.  The doctors are also very happy with how Phoebe's blood work has been looking for the past 2 days that they have decided to test it just once a day.  It is amazing how quickly things can change from one day to the next.  We are so very relieved to hear the good news, but I think that the fear and the worry that  we felt yesterday and at the beginning of this very long journey will always be there.

Today is a new day and the concern now is with some graft versus host disease that Phoebe is showing on her skin.  This is to be expected because the drug that is used to prevent it was stopped on Sunday so that the graft was able to take over.  They are planning to start it again today, but to keep her dose very low because it is important for Phoebe to have the very important graft versus Leukemia effect that comes with GVHD.

This morning, to celebrate another huge step taken towards recovery, Phoebe had a visit with her big sister Mae, and together they enjoyed some baby snacks.  Mae loves Phoebe's snack foods, and Phoebe is learning.  She watched Mae crunch on her crackers, and then quickly caught on and opened her mouth to try.  There were a lot of smiles as we are all so happy that home is once again within our reach.

1 comment:

  1. You guys will soon be home. Pheobe is an amazing little girl, I'm so proud of her. I wish I could be there to give you all a great big hug.