Wednesday, June 1, 2011


Taylor ballons

I’ve finally found the courage to write this entry.  I struggled with writing it because I was worried about what some might think & I finally let that go.

I’m confident in the decisions I’ve made & I can’t let what others think scare me.

Taylor was diagnosed with chronic myeloid leukemia.  While this type of cancer is more common in older adults, it can happen at any age.  The oncologist believes Taylor developed this type because it involves issues with the #9 chromosome and Taylor has Trisomy 9p.

We are not exactly sure what stage Taylor has because we are not going to do a bone marrow biopsy.  The reason for not doing one is that we are not going to seek treatment.

I’m sure there will be people shocked by that.  I follow the blogs of some DS children being treated for leukemia.  However, we don’t feel it’s in Taylor’s best interest to put her through chemotherapy.  I’ll admit to being scared when I shared that decision with the oncologist but he was surprisingly understanding & sympathetic.  He actually agreed with our decision.

Taylor has many other health problems and we’ve been told that she’s already outlived the expectations of all her doctors.  I want whatever time Taylor has left to be happy.  All her doctors believe that the side effects from the chemo outweigh the benefits of putting her through the treatments.

Believe me when I say that there was a lot of thought and research  that went into the decision that we made.  Right now, we are treating any symptoms that might make Taylor uncomfortable and her doctors are on board with that. 

I know in my heart that we’ve made the right decision and the best decision for Taylor.  Of course there is that part of me that wants to do whatever it takes to keep Taylor here with me.  But how selfish would I be to subject Taylor to being sick & unhappy just for my benefit?

I’m sure there will be people that think I’m doing the wrong thing.  I would ask those people to keep in mind that they don’t know Taylor’s medical history.  They need to understand that the decision we’ve made is made with the love we have for Taylor.  I love that girl more than I could ever put into words but I have to do what’s best for her…not what’s best for me.

Right now, we are focused on keeping Taylor happy & comfortable.  Taylor is surrounded by the people and things that make her happy & fulfilled.  She has her diet coke, car magazines, computer filled with Barney videos, grapes, & her TV .  Sounds like the perfect life to me.

Besides…Taylor is stubborn enough to outlive us all despite any diagnosis.