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.

Friday, June 29, 2012

Peace out line number 9 ...

After fairly usual airport shenanigans which included extra questions going through security, a stroller that tested positive for explosives, Phoebe and I being thoroughly searched and patted down, some screaming on the plane - from Phoebe when she wasn't able to sit in the empty seat beside us during take off and landing, and a great big sigh of relief upon landing in Memphis.  We are back at St. Jude.

Phoebe is good, great actually, and so far everything looks very close to perfect with her blood work. She was very happy to see her doctors again and to be back at St. Jude- she actually started clapping as we pulled up to the Grizzlies House.  It is a special place, St. Jude.  We will get results from her chimerism and other tests early next week.  One of the tests that they run is a measure of Phoebe's helper t-cells - this is to determine how well her immune system is working.  On the last count, she had around 250 helper t-cells and the doctors want to see the number at or above 400.  If it is at this level, life as we know it can return to a bit more normal.  Phoebe will not need to as isolated as she has been and she can hopefully start to experience things that other children her age are doing.  Like going to the park on a beautiful summer day.

As I write this, I am sitting in the waiting room waiting for Phoebe as she has what I hope is her last procedure.  Yesterday, when her line was pulled (yes, it is out!), the cuff of the line got stuck and this morning she was sedated so that the doctors can remove it surgically.  Despite all that I have seen Phoebe endure, watching the effects of sedation take over her little body is quite possibly one of the most frightening.  I worry about many things and holding Phoebe as her body goes limp in my arms, is something that has always sent me into a panic.  I will not miss this feeling and hope I have experienced it for the last time.  Sitting here, I am wondering how many times Phoebe has been sedated.  I think it is too many to count, so instead I will continue to count the many days that she is away from all things cancer.  Today we are 211 days post transplant and very soon Phoebe will get to splash for the first time in a wading pool, run through a sprinkler to keep cool, and take a tube free bath.

We are very lucky and being back at St. Jude just makes that seem so much more so.  Phoebe is doing it and this visit brought us to another milestone in treatment.  We will now, despite my anxiety, be visiting St. Jude once every 2 months instead of monthly.  The doctors explained too that at our next visit in 2 months, Phoebe will be 9 months post transplant and at that point her visit stretches out even further and she will be seen next when she reaches one year post transplant.  Wow.   We will still be taking her to Sick Kids for regular follow up, probably monthly now instead of every two weeks, but we are slowly and happily making our way away from all of this.

Life, as we know it, is getting back to normal.

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