Just to give you some back ground. My husband in addition to the 9:22 Philadelphia translocation also has the 8:21 translocation for AML. There has only been 5 or 6 cases world wide. He was initially diagnosed with CML in September 2013, all seemed to be traveling along ok until December when he started to have the same symptoms as diagnosis and has just recently returned to hospital (3 weeks in so far) where they are now treating him for the AML.

He has also a myeloid tumor in his spine which has rendered him unable to feel (initially) anything from his nipples down. Over the past 2 weeks he has had radiation for the tumors and intravenous chemo to kill it all off. He has been told to give up his work (for at least the next 12 months). This has improved slightly with him being able to move his hips and the nurse advised that a little feeling in the very top of his legs. I know I should not think of things this way but I am so frightened that he will end up in a wheel chair. The next step is by putting chemo directly into his spine to assist in treating the tumors.

Our home is also 2 hours from where the hematology clinic is and the specialist hospital also. It is hard as since he can not work I have to keep working and also just because I leave the house does not mean thing stop needing to be dealt with. I feel guilty coz I can't be there more often but I am not sure I would be able to handle sitting in a hospital day in day out. We would run out of things to discuss eventually and his sickness would take over our life. Keeping things regular gives me a sense of normality and gives me the strength to be strong for him.

Apparently his leukemia is now very aggressive but have assured me that he has progressed as expected. I have been so frustrated as the 2 types seem very different in treatment and how they work. Up until a few hours ago I was not understanding what was happening at all, the doctor called me after me calling to speak with a nurse today to get more understanding. My husband is fighting and tells me that he sometimes can't focus on what the doctors are saying leaving me completely in the dark.

Unfortunately after all this treatment he will be sterile, with a very small chance that he won't. So I am coming to terms with the fact that children are pretty much off the cards. Due to the tumor in his spine and the feeling loss he was unable to give a sample for storage for use later.

He is still in the hospital and has just become neutrphillic (not sure of spelling) and it is hitting him pretty hard. He has an infection and having blood transfusions. They are talking stem cell transplant in the next few months and are currently looking for a match.

Just wondering if people can give me info on their experiences. Maybe a little reassurance?