[Marlene]

Hi Matthew,

I think you are right...caregivers can and do worry more than the patient. I know John could turn over a lot of that worry to me since I was looking out for him. I'm glad I could help relieve some of that burden so he could spend what little energy he had on healing. Also, he was too exhausted from the ordeal. The first year was the hardest. The second year became more routine but still consumed our lives.

I don't have an exact count of red cell transfusion but I know it exceeded 175 units over two years. I did not keep track of them when he was in the hospital. There were days he was getting them daily along with platelets. In the beginning, I did not realize the importance of tracking things so there's a gap. He was not making any and also had hemorrhagic cystitis from the cytoxan that took six months to resolve.

John's red cell threshold was 8.3 and when he needed red cells, they always gave him 2 units.

That's a lot of iron to deal with and it took years to get it off. Mostly because he couldn't take an aggressive approach. The drugs were too hard on him and phlebotomies were taxing on his bone marrow so he had to go slower than anyone would have liked. But he got there!!! It will be 20 years this April since he was diagnosed. I am so grateful to all that have helped us through this journey. Remembering the kindness of others can be emotionally overwhelming to this day.