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, February 6, 2012

Tube free Phoebe

This morning for what was probably the 100th time, Phoebe pulled out her ng tube.  This is the tube through which she gets the majority of her nutrition and it is something that she has had since shortly after her diagnosis.  We would love to see an end to ng feeds, to the leaky tube that goes in Phoebe's nose, is taped to her face, hangs down her back, and has to be replaced in a way that resembles torture and apparently, so do the doctors.  They have decided to give Phoebe a chance without the ng feeds, to see what she will do, and we are hoping that this is a first step toward an end to everything tube related.  And it is so wonderful to see her whole face again.

Phoebe will drink from her sippy cup, and she is slowly expanding the number and types of foods that she will eat, but she rarely finishes anything.  She loves her goldfish and she will suck on 100 before she will chew and swallow 2.  She is a  unique one, our Phoebe.  So, while we are hopeful that this is the last time Phoebe will pull out her ng tube, we are realistic and aware that this is something that she has had for the majority of her life. As usual, we are going to follow Miss Phoebe's lead.

Phoebe had her blood tested today, and everything looks very good.  Her platelets and hemoglobin are coming up on their own, and her white count is holding steady.  This week's chimerism results should be available by Thursday and we will anxiously await the results.  The doctors are impressed with Phoebe's progress and spent some time today just watching her play and do her thing.  She is working very hard with her walking and now I am a bit worried (but very excited) that she might be mobile by the time we head home in a couple of months.  Worried because I will be trapped on an airplane with 2 very active and now possibly very mobile toddlers, and so very excited for many other reasons - Phoebe is learning to walk!!! 

In other news, Jon the regular blood donor has now given over a gallon of platelets to the kids of St. Jude.  He never misses a week in the donor room and to put it in perspective, those giant plastic tubs of icecream or a large can of paint - fill one of those and then some and that is the amount of precious platelets that Jon has given.  Go Jon Go.

If all continues to go well, home in the Spring is looking like a very realistic goal.  Although it is hard for us to make plans that are more than a week in advance, I have embraced all things hopeful and signed up to run a half marathon on Ottawa's race weekend in support of Candlelighters Childhood Cancer Support Programs.  Before Phoebe was diagnosed, I like to think I ran on a regular basis, but as many Cancer mums and dads can probably attest to, life in the hospital with a sick child can be both physically and emotionally exhausting and leaves little out of hospital free time.  Now, with the half marathon goal in mind, and a wonderful organization to support, I am enjoying the overwhelming feeling of peace that running brings me.  A chance to push Cancer to the farthest corner of my mind.

Candlelighters is a wonderful source of support to families like ours and others throughout Eastern Ontario who find themselves faced with a childhood cancer diagnosis.  Their focus among many is to enrich the lives of children with Cancer, to ensure a wonderful quality of life, and to help families by easing financial burdens.

If you can, please help me support Candlelighters and their mission to better the lives of children diagnosed with Cancer, by making a small contribution.


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