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, March 18, 2013

Change of plans ...

It is a good thing we went to the beach when we did. Today we got results of Phoebe's t-cell survey; this is a test that looks at the break down of different types of t-cells. The "helper t-cells" are important and help the body fend off viruses, they like to see them over 400 and when they are low, the kids are required to wear a mask and be extra cautious. Phoebe's are 270. If I had known this on Friday, we probably would have postponed our trip.

It is normal and expected for these cells to be low after chemo and radiation so not surprising, but still nerve wracking. To add to the stress on our nerves, Phoebe's doctor has decided to postpone her bone marrow aspiration and give her a dose of my t-cells. A procedure called a DLI (donor lymphocyte infusion). He told me today that he would give Phoebe more cells even if the results were zero as a precaution, so rather than wait for the results, waste precious cancer kicking time, and risk the chance that they are not zero or close to it, we will give the DLI and follow with a bone marrow aspiration two weeks later. He also said that right now, when Phoebe's t-cells are low, is a good time to do this.

In two weeks, if it so happens that this bone marrow aspiration is not MRD (minimal residual disease) negative then Phoebe will have another DLI and so on until every last bad cell is gone forever. Never to be seen again.

We have pieces of a plan again, and it looks like our stay in Memphis will be extended. The latter may not be so bad as I have heard that Ottawa is about to get a ton of snow. Thank-you Mother Nature for cooperating with our schedule.

Because I am donating more cells, I had to see the nurses in assessment triage, have my blood pressure and temperature taken, and blood work done. I brought Mae and Phoebe with me and on the way I was explaining to them why I also needed to go to the hospital. They are older now and understand a lot more about what is going on and have many questions. I told them that I needed to give Phoebe extra special blood cells that are fighters to make sure all of the bad cells go away. I am never sure what to tell them and how much is too much information. This explanation seemed to work as they both started to simultaneously punch the air, to take out imaginary bad cells, all while making pretty convincing punching sound effects.

I am not one to encourage violence, unless of course, it involves the kicking and punching of leukemia to the curb.

Go Phoebe go ...

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