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, December 20, 2011

Busy, busy, busy Phoebe Rose

Phoebe has been very busy.  Over the past two days, she has seen opthamologists, neurologists, her BMT doctors, she has had an eye exam, an MRI, a lumbar puncture and an EEG (essentially a brain scan).  They are trying to determine whether or not Phoebe's odd eye movements and simultaneous drop in her oxygen saturation levels are in fact seizures.  They are still trying to put together the many pieces of the puzzle in an effort to answer their and our many questions but this is what we know.  We know that the eye exam showed optic atrophy and/or papilledema - we have heard different things from different doctors and we are waiting to hear back from the opthamologist to confirm one or the other, or both.  Papilledema is swelling of the optic nerves and Phoebe has had this in the past, it was thought to be drug related and was treated.  The atrophy may be secondary to this, but the cause of both, if they are there,  must be foud to prevent further complications related to Phoebe's vision.  The lumbar puncture showed normal intracranial pressure - they were looking at this because papilledema can be caused by excessive pressure.  The MRI showed nothing to suggest any serious problems, just the optic atrophy and/or papilledema the seriousness of which we aren't sure, and did not lead the doctors to believe that Phoebe was having seizures.  The EEG (brain scan) is the test that will ultimately tell us whether or not they were seizures and those results will be in tomorrow.  We are not sure if the atrophy and the seizure like behaviour are related, but all of this is completely overwhelming and frightening to say the least.  It is hard not to know what is going on.  We are hoping that the seizure like episodes are simply related to medications, that they go away and never come back, and that they don't cause any more problems or result in any more tests for Phoebe.  We are hoping that the atrophy is minor, that it will not affect Phoebe's vision and that it also goes away and never comes back. 

In regards to the other transplant related issues, they all seem to be improving.  Phoebe's weight and liver enzymes are coming down which means she is less likely to have or develop VOD, her belly is smaller, and although she is still very much not herself, she has been up playing a few times in her bed over the past few days, and we have seen some smiles.  Her face lit up yesterday when she caught sight of Mae through the glass of the fishbowl, which was enough to bring tears to my eyes as I was beginning to wonder if I would ever see her smile again.  She does seem to be depressed and is at her best when we are out of her room, doing our laps around and around the BMT unit.  She actually got very mad at the doctors for arriving just as we were about to go for a walk today, and proceeded to shout and scream at them for the entire visit.

We are hoping for more news tomorrow that will hopefully help the doctors solve the puzzle of all that Phoebe has been up to these past few days.  Tonight I have caught a few glimpses of bright, shining and smiling Phoebe Rose, and although they were few and far between, I believe she is on her way back.  As I write this she is sitting in her bed watching Baby Einstein and munching on cheerios, she actually smiled and laughed at the sight of those beloved cheerios - that has to be a good sign.

1 comment:

  1. She looks great! Syd has that shirt, they should pose together!

    I am sure having you sister there will be very helpful through all of this! Wish we were there to help w Mae:)

    Stay tough Megan