Hi Mercedes,
I'm truly sorry to learn of your father's rare form of leukaemia.
I don't know if you've been following my own story but for two years I battled another rare blood disorder known as Mantle Cell Lymphoma. I refused all types of conventional treatments because I wanted to try and cure myself through the use of natural remedies, including organic food and homeopathic remedies. For a while I seemed to be doing ok, but a tumour under my left armpit kept on growing and eventually reached the size of half a melon and I literally couldn't put my arm by my side.
I didn't want to have chemotherapy because I knew it was toxic and as well as attacking the cancerous cells it would also damage healthy cells. Around 18 months into the disease it was obvious my body was falling apart. I had fluid taken from my left lung, twice. The second time I was admitted as an in-patient and the nurses drew off 6 ltrs of fluid. I knew I had to do something.
When I went home I was extremely weak and could no longer climb the stairs. I became a virtual skeleton and the cancer had moved into my face and was affecting my breathing in the nasal passages. It turned out I literally had only a few weeks to live.
Coming so close to death all I could think about was my younger son at home and my beloved wife, Claire. I desperately didn't want to leave them behind and, as my attempts at curing myself were obviously not working, I consented to have chemotherapy.
The treatment itself was easy to take - but on three occasions I was violently sick. The other five treatments I had, with the last three especially, went without a hitch, as though my body had become accustomed to the treatments. I went into complete remission and my consultant haematologist decided it was the best time for a stem cell transplant (SCT).
I had what is known as an autologous SCT, which means I had to sit in a chair with tubes in both arms while the stem cells in my blood could be filtered out (rather like dialysis). The whole process is completely painless (except for the needle going in) and takes around 4 hours. I then had to wait for a bed to become available and, after six weeks, one did and I was admitted. The following week I received chemotherapy every day for seven days and then my stem cells were transfused back into me. The idea of the chemo is to kill any cancer cells that may still be around and then the stem cells are put back to virtually make a "new body".
I mention this because there were many leukaemia patients on my ward - indeed, it was called the adult leukaemia unit - and they, too, had stem cell transplants. I don't know for sure but perhaps your father could have the same treatment - but it would mean storing his own stem cells taken from his blood.
I was supposed to be in hospital for around three weeks but I ended up with acute renal failure and had to stay hospitalised a further 4 weeks. During my entire hospital stay I had around four blood transfusions. Your father, however, could still have the SCT and refuse the blood transfusions - but I wouldn't recommend it!
The point is, I have come through two years of hell. The disease took its toll on my entire family and Claire and I even talked of splitting up once I had recovered enough. After 27 years of marriage you can imagine how we both felt - but I emphasise it was the disease that had been putting us under so much pressure. I had an idea Claire was suffering, but it was more than anyone can imagine. While people were concerned over me, hardly anyone - especially the medical staff - asked how Claire was coping! It turned out she was exhausted and devastated.
Again, I tell you this to be of help because never think your mother is truly coping. She will need comforting as much as your father, if not more. Your mother will need all the help you and your siblings can provide.
Happily, I am getting back to full health, have been given the all clear and, best of all, my marriage is as sound as ever
Your father definitely needs to be treated. The blood issue, I feel, is one you will probably not resolve - but he could still have SCT.
I wish you, and especially your father, a wonderful happy outcome.
Love,
Ian
