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 24, 2013

Swim Phoebe Swim

The wait is over and yet we have no results. The sample that was taken at CHEO and sent to St.Jude (that was also possibly diluted) was not enough to run the RT-PCR test (the minimal residual disease test) and so next week we will be testing again.

Next Tuesday, Phoebe will have another bone marrow aspiration and the sample (which will hopefully be good and plentiful), will be sent to St.Jude and we will hopefully know soon what the MRD results are. These results are especially important as they are the most sensitive and are looking for leukemia at a very low level.

For now we will hold on to the one piece of good news from this bone marrow test. That is the perfect chimerism, and hope that this delay and mix up will not cause any problems. We will hope that when we finally get all of the results, they will be negative.

In other news, and in many ways this is the most important news - Phoebe went swimming yesterday!

Last night as her Daddy put her to bed, I listened as she told and retold the events of her exciting day.

It went something like this. In the cutest voice ever.

"Daddy, I went swimming today. In Granny, Grampa's pool. I wore my puddle jumper. I swam all...by...myself! Daddy ... I also jumped into the pool. All by myself, Daddy. Mae went swimming too. Mae wore her puddle jumper too. Daddy, you swam under the water. I kicked my legs. Like this ... (sound of wee legs kicking the mattress). Like this Daddy (more kicking)."

And on and on she went.

If I could bottle up the joy that Phoebe expressed yesterday as she got into that pool, or the wonderful and joyful energy she created for the people around her. If I could bottle it and share it, I think I could make the world a better place.

It was magic.



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