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.

Tuesday, January 3, 2012

Happy New Year

In the world of bone marrow transplants, we have hit another important milestone.  We are now able to visit the hospital every second or third day for blood work and a check up, rather than the daily visits we have gotten used to.  Phoebe is doing well.  Today, her blood work looked good.  Her bone marrow is producing many cells, including platelets, healthy white blood cells and red blood cells.  Her white count is 9 today, which because of what brought us here to St. Jude and all that we have been through, caused me to worry.  It is completely within normal range but when you are used to zero white blood cells, 9 can seem odd.  Thankfully, after talking with Phoebe's doctors, I was reassured that all of those cells are good ones.  No sign of Leukemia. 

We finally received most of the long awaited bone marrow results.  The chimerism shows that Phoebe's bone marrow is making 100% donor 2 cells. This means that right now, all of the many blood cells that are being produced in Phoebe's bone marrow are donor 2 cells. My cells.  There is no sign of any of Phoebe's cells, or the first donor's cells.  And this, is simply fantastic news.  The results of the cytogenetics and MLL (multi lineage Leukemia) gene testing are all negative for any signs of this gene or Leukemia.  The MLL gene is often found in infant Leukemia and is one of the factors that makes treatment difficult and complicated and associates the disease with a poor prognosis.  To never hear the words, multi-lineage and Leukemia again would make me very happy.  The final result that we are waiting for is the minimal residual disease test, which looks more deeply for Leukemia cells.  It can find as few as one cancer cell in a million healthy cells and is an important way of determining how successful treatment has been.  Phoebe has never had this test done before and we are anxious for the results.

In other Phoebe news; she is going strong.  Crawling, standing, babbling, clapping, pointing, blowing kisses, and doing some talking and eating.  All of her tricks that disapeared soon after transplant are back and now we have nothing but growth to look forward to.  In some ways it is hard to imagine a life without chemotherapy, the hospital, and all things Leukemia related.  It has run our lives for the past year and a half but as each day passes, we move a bit further away from the fear that surrounds all things Cancer.  We are hopeful that one day, Cancer will no longer be at the forefront of our minds, that we will look back and say - "remember that time we lived in Memphis?", and then we will look at Phoebe and think of how amazingly far she has come.  One sweet day.

Right now we have much of the same to look forward to.  Phoebe will be monitored closely in Memphis for at least 100 days post transplant.  We are currently on day +33.  She will need to be somewhat isolated from people, crowds, and public places; only visiting the Target House and the hospital for the next 100 days at least.  Her immune system is recovering and because she hasn't been able to develop immunity to anything, or receive any vaccinations, she is succeptable to many viruses as well as bacteria and germs.  We feel very lucky and blessed to be able to spend these 100 or more days in Memphis, together as a family.  2012 is off to a wonderful start. 


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