Monday, August 19, 2013

Hello family and friends. I haven't written because we have had a lot of last minute changes in treatment options. Last week the doctors, worked hard to get me tested for admission to a clinical trial which would fight my leukemia and act as a flt3 inhibitor. I had a surprise bone marrow biopsy, lung tests, a spinal tap, echo reading and an EKG. All these test were done over two days but the results came back quickly.

I feel really good about my doctor, her name is Eunis Wang, she is known by the staff as the Drill Sargent. Plus, she seems to generally care and will do what she can to make sure I get the best care possible. She is on vacation for two weeks but she called me Saturday morning to go over the change of treatment. She explained that my spinal tap showed that the leukemia has moved into my Central Nervous system and to my brain. This means we have to use two types of chemo one for the blood and another for the CNS.   Then she gave me her personal cell number and to call no matter what.  That's unheard of, of course she  mentioned not to tell the other patients.

I will continue to take Sorafenib for the blood and I will receive spinal taps MWF where they will shoot chemo directly into the spine. The good news is Sorafenib is a flt3 inhibitor, which I think will stop my disease from mutating which makes it stronger. Once we see the leukemia go  down to a suitable level or disappear completely we can move forward with the transplant.

I am so thankful for the doctors, nurse practitioners, nurses both inpatient & out patient. Every one treats me like gold. Most every one knows who I am and have been working behind the scenes to fight the disease.   Even the floor nurses who treated me in house even have called me to see how I am doing,  I feel so safe here at Roswell and I know I am getting the best care possible.

I think that's it for today. I feel strong and confident that this new treatment.. I will win the fight against this disease. Thanks for reading even though the posts have been sporadic. Much love from Roswell's infusion room.