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.

Monday, October 3, 2011

All our bags are packed ...

Phoebe's temperature is coming down.  Over the weekend, as time passed, her fevers became less frequent and her mood improved.  She still has about one fever a day, but appears to be feeling better. We learned that the particular type of bacteria that was found in her blood, is also inside her PICC line, but that it is not the type that typically sticks to lines, and so as long as things improve, the line can stay.  This is line number 5 for Phoebe, and so if we can save her from the stress, infection risk, and sedation that would come with getting number 6, at least right now, we would like to do so. 
All in all, we had a good weekend.  Despite the uncertaintly of our trip to Memphis, we continued with our packing and preparations. This was a good thing, because  after speaking with our doctors this morning, we learned that many people are working to get Phoebe to St. Jude on schedule.  The details of how we will get there have yet to be completely worked out, but we are hopeful that it will still happen on Wednesday.

Today my cup of thanks was once again overflowing.  I have been spending a lot of time looking back over the past year of hospital life, and marvelling at everything that Phoebe has accomplished.  Over the past few days, despite an infection in her blood, and the fact that she probably feels very far from what most people would consider good, she has still been doing her thing.  Developing and learning new things everyday.  She amazes me.  It has been 9 weeks since Phoebe's relapse, since what was quite possibly the worst day of my life, and in that relatively short time, we have come so far.  I have come to realize that this time that we have had, may not have been were it not for some very special doctors.  Doctors who despite all of the odds that are and have always been stacked against Phoebe, agreed to try  - to give Phoebe one more chance.  To them,  I am eternally grateful.   Although our road ahead and the future is full of uncertainties and likely some very difficult days, we are still moving forward, and our goal has never changed.  We want and believe in a cure. 

As this chapter of Phoebe's story is coming to an end, I would like to take a moment to thank The Hospital for Sick Children, or "Sick Kids" as it has come to be known.  While we were here for treatment, we witnessed the work of some very incredible people.  Their work, the difference that they make, the lives that they change, proves that it just takes one.  Wonderful and life changing things are happening here.  Work and research is ongoing, and the folks at Sick Kids are determined to advance the cure, to help Phoebe and those like her.  The determination and optimism of our doctors has opened doors for Phoebe that wouldn't have been open otherwise.   Phoebe's primary oncologist said it wonderfully today - he said that it is to help people like Phoebe, with the belief that a difference can be made, that gets him out of bed everyday.  And we are so grateful that  he does.

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