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.

Friday, September 2, 2011

Busy Phoebe Rose

Thursday, September 1st 2011

As I write this, I am waiting in the basement of the hospital, in the MRI reception area. Phoebe is doing great, she looks well, is happy and full of energy, but right now she is having an MRI done - the doctors are looking at images of her brain - and I am having a very difficult time with this.  We have seen many doctors on our journey, from many different specialties, but neurologists - I was really hoping we wouldn't see neurologists.  Yesterday after Phoebe's CT scan, which also looked at her brain, but didn't give the doctors enough information regarding her nerves, we were told that Phoebe's scan looked good.  Not normal, but normal for a child who has undergone chemotherapy.  What does this mean?   I guess it means that chemotherapy, despite the many times we were told that it has little impact on the brain, really does. 

I took Phoebe down today, she was sedated which in and of itself is difficult.  To hold your baby and feel her go limp in your arms, to see her eyes roll gently to the back of her head.  Each time I bring Phoebe for a procedure that requires sedation I hold her and whisper that it will be okay, and then I leave the room and the tears start to flow. 

I waited in the waiting room for an hour an a half, which is twice as long as they told me it would be.  There is an element of fear in each of our days.  I am afraid of complications, of what is happening behind closed doors, of what the doctors are thinking, and ultimately of what the doctors will say once the procedure is over. 

I am also a bit obsessive about the brain and development as probably most parents are. When Mae was a baby, after each round of immunizations I would obsessively watch her to make sure she was still making eye contact and acting "normally".  Through all of this, I have discovered that "normal" is a relative term.  What was normal for Mae, is very much not normal for Phoebe.  Phoebe is Phoebe and regardless of what her brain looks like on a scan, she is developing and learning everyday.  There are areas where she has some delays related to the fact that much of her first year has been spent in the hospital, but she will catch up and regardless of treatment and what she is going through on any particular day, she is still learning and developing.  In the past few days alone she has learned to point, has made more new sounds, and she recognizes and waves hello and goodbye to all of her new doctor friends. 

Now it is the end of our day.  We have heard some good news and some not so good news from our doctors.  The good news is that Phoebe does not have any signs of Leukemic infiltration on her optic nerves.  Her optic nerves, in the words of her doctor are "pristine".  The not so good news is that she does have papilledema - which means that she has swelling behind both of her optic nerves which sometimes happens when there is increased pressure in the brain, but according to the neurologists, her MRI and Phoebe, she has absolutely no symptoms of this which is reassuring to the doctors. Tomorrow she is scheduled to have a lumbar puncture which will help them to decide what to do next in terms of treatment. 

"Two visit Phoebe" is living up to her reputation, only now it is based on the fact that at any given time she has two issues for her doctors to think about that require many visits from multiple doctors each day.  As for the fairly large issue of her relapsed Leukemia, her white cell count is 1.5 again today and she just received the third dose of the study drug.  On that front all seems to be going well, she has had no side effects from the treatment and she is still happy and joyful Phoebe. 

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