2nd Opinion

Addison met with Dr. Sandler, the head of the hematology/oncology dept at Nemours, on Thursday. The apointment went really well. Dr. Sandler started the visit by telling us how impressed he was with how thorough our doctors have been here in Tampa. He said that it would have taken him months to get to the point to run some of the very specific genetic tests they ran so quickly. He then examined Addison and was amazed (like every other doctor that meets her) to see how completely normal she acts and looks!

He had reviewed all of her biopsy slides with his pathologist and they concluded that her bone marrow has improved substantially everytime it was drawn. His professional opinion was that Addison was exposed to some virus or toxin that caused her bone marrow to fail and that her body is SLOWLY repairing itself. He did not think we should do the ATG/Cyclosporin treatment in January or ever really. The only way he would do that treatment is if Addison's number sigificantly decrease back to severe aplastic anemia levels. We DONT want that! He did say he would repeat biopsy in Jan if her platelets have not increased from where they are today (29) and see what her marrow is doing. He said there are other drugs that have less long term side effects as the ATG that could possibly stimulate platelet production. We will explore those options further if we need to (pray we don't).

We asked him if he felt there was anyway we were missing anything or could it be anything other than this viral induced "bone marrow failure". He was confident it was not MDS and definitely not Leukemia! He made a good point to say that with these cancers/conditions you get worse with time, usually pretty quickly...in Addison's case she has really only improved her overall condition. This was wonderful news for us to hear.

All in all the apointment was what we hoped for and it put everyone's minds at ease a bit. We wanted to confirm that the course of action our doctors have planned is what is best for her and Dr. Sandler agreed with everything they have done/doing. We asked him his opinion on keeping the port and he said he would take it out since we are not using it. I am going to discuss that further with our Dr when we see her next the monday after Thanksgiving! In the mean time we just need Addison's marrow to kick it into high gear and work on replenishing her platelets and neutraphils!