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 18, 2013

Day 1 complete ...

Sitting here waiting for Phoebe to finish with her radiation. This afternoon she went from happily playing with Mr.Potato Head to fast asleep with sedation. I wonder often, especially now that she is older, just what she is thinking when this happens and when she wakes up. I have been sedated only once in my life and I remember waking up so confused and disoriented. I wonder if Phoebe wonders what happened, where she went, what they did. And then I think about the total number of hours that Phoebe has been sedated for all of her many tests and surgeries. It is measured in days. Despite these facts, that we have lost days to drug induced sleep, I still get to hold Phoebe when this is all done and I will count my blessings and hold her tightly for as long as she will let me.

I will, however, never get used to watching my baby fall into a drug induced sleep and I often leave the room quickly so that the nurses and doctors don't see the tears. It is something that, even with everything we have seen and the tough skin we have acquired, that I will never get used to.

But, day one of radiation is under our belts. All went smoothly and despite being unable to eat for most of the day, Phoebe was a beautiful trooper. It wasn't until she woke up, had her dinner/lunch/breakfast, and then was told that she still needed to go to the medicine room to receive her weekly dose of vincristine, that she lost it. And I mean lost it. Her little self thrown on the ground, tight fists, screams of "I don't want to!". A complete melt down and she did not recover until we were well outside of the hospital and on our way "home".

In addition to the busyness of today, we heard more good news. The chimerism of Phoebe's bone marrow came back with 100% donor cells. The last chimerism that was done, when we discovered the relapse in December, was a devastating 91% donor cells. This is good news, but knowing that Phoebe does have a low level of disease in her bone marrow, I wonder if we will ever rest easy. When I told Phoebe's doctor about my worries and skepticism of these results, he said that part of transplant is ensuring that all of the leukemia cells are wiped out, but also that Phoebe is given an immune system that will carry her, leukemia free, for life. News of 100% chimerism is an assurance that Phoebe's immune system is working as hard as it can to make this right for her.

A strong and well functioning immune system is something that should never be taken for granted. It is a beautiful thing.

In other news, Jon donated his third double unit of platelets (of this trip) today. Filling the need here at St.Jude and hopeful that he will meet his goal to donate another gallon while we are here.

If you would like to fill the need in your community, please visit a local blood donor clinic. For those of you in Canada, you can call 1-888-2-donate to make an appointment to give. It truly is a life saving gift.

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