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.

Thursday, October 13, 2011

The fine details

I learned a lot today.  We had a meeting with one of Phoebe's doctors to discuss treatment.  It was informative, overwhelming, encouraging, and very interesting to say the least.  Phoebe's type of Leukemia is rare and difficult to treat, this we know.  There is a genetic component to it that is complicated and I don't think I will ever completely understand what it means or how it came to be.  It is called the multi-lineage Leukemia (MLL) gene, and  is often found in infant Leukemia and one of the reasons why it is so difficult to treat.  The cytogenetics testing that looked at Phoebe's bone marorw sample, found this MLL gene rearrangement in 3 % of the cells.  This news means that Phoebe definitely has evidence of disease and so she is eligible for the natural killer cell therapy.  It also reminds us once again, of just how stubborn and nasty Phoebe's Leukemia really is.   

Usually, a bone marrow aspiration is done when the blood counts have recovered because this way, there is more to see and test.  In Phoebe's case, her bone marrow aspiration was done early, so although they found zero Leukemia cells, they were looking at a very small sample.  Our doctor today said that yes, Phoebe is technically in morphological remission, but this finding was done from an unreliable sample - meaning that if they were to wait longer for the bone marrow to recover they may have found more cells.  Or perhaps they wouldn't have found more cells, we will never know because we are moving forward with treatment.  The plan is for Phoebe to have 5 days of three different types of chemotherapy, followed by an infusion of my natural killer cells, and the hope is that this will put Phoebe's cancer into a remission that will be deep enough to go to transplant.  Considering that when we started treatment after Phoebe's relapse, there was 90% Leukemia cells in her bone marrow, the fact that it is now down under 5% is still wonderful, and we are making great strides in the right direction. 

I talk a lot, and I ask a lot of questions.  Today, though, I thought to myself - maybe it's better not to know? Before this meeting, I was blissfully unaware.  I heard the good R word - remission, and I went with it.  I didn't think about all of the fine details, the many things that make Phoebe's cancer and everything about treating it complicated. Nevertheless, my many questions brought a lot of answers.  I learned that the NK cell therapy although it is experimental, has been used in treatment at St. Jude since the early 90's with great success. And that in the lab it has been seen to be effective in targetting cells specific to infant Leukemia.  That when combined with immune system suppressing chemotherapy, the NK cells attack Leukemia cells.  That they do this without the toxicity and many side effects that come with chemotherapy.  Many very good things that I would not have known if I remained in my bubble, blissfully unaware.  So, I will still be blissful because we are here, we have this second chance, Phoebe and Mae are bonding and happy, and we are moving forward and towards the cure, but I will continue to be aware.  Or as aware as possible.  

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