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, June 27, 2011

Out and about

Good news ... the results of Phoebe's skin biopsy are also negative for any signs of Leukemia. Thankfully, the odd bruises on her head appear to be just that,  Phoebe's very unique way of bruising right now.  We are happy to be back on the road again, and yesterday we sprung Phoebe out of the hospital and took her and Mae for a walk outside.  As usual there was a lot of action in the big city, and we walked to Queens Park and around the grounds of the University of Toronto.  There was some music and dancing in the park that Phoebe happily bopped her head along to and there were a lot of smiles. After the walk we sat in the shade and ate some watermelon, Phoebe munched on a cracker, and she saw her very first dog up close!  He was on a break from his work at Sick Kids and came over to say hello.

On the walk outside we got a glimpse of what the next year will look like.  Phoebe will be at home but the places she can go and the people she can see will be restricted - no public places or people who are sick because her immune system will still be rebuilding itself and it will be a year before she receives any of her immunizations.  On our walk, we were careful to avoid crowds (which can be next to impossible on a busy Sunday in Toronto). But, because we have spent the past 8 months in hospital with Phoebe, any outside time is freeing and wonderful, and after spending the past 2 months in busy Toronto, avoiding crowds of people will be a welcomed and easy thing to do.

This morning in rounds we discussed the possibility of going home, making sure that the door to Phoebe's room was firmly closed.  Maybe I am superstitious but the last 2 times home was mentioned, Phoebe decided she needed to meet more doctors.  The doctors acknowledged that we need to be comfortable with the decision to go home and they asked us if we think there are any more steps that need to be taken towards recovery in order to make home a possibility.  Phoebe is requiring platelet transfusions only about every 2nd day now which is encouraging but she is still eating very little if anything by mouth.  Although she can go home with her feeding pump and tube, it would be nice to see her make some steps towards eating on her own.  Her NG tube seems to irritate her throat and make swallowing uncomfortable so the plan right now is to pull the tube and see what Phoebe does.  It is impossible to predict what will happen.  Maybe Phoebe will continue to eat nothing by mouth despite her hunger or maybe (hopefully) she will surprise everyone and eat.  My vote, because everything that has happened so far has been surprising, is with the latter.  In either case, we will continue to take things one day at a time.  Phoebe has made it very clear to us and her doctors that she likes to do things in her very special way, and I have a feeling that starting to eat again will be no different.

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