Is this a familiar story? UPDATED

2 minute read time.
Updated .... I am the sister of a fantastic 53 year old man who has Acute Myeloid Leukaemia. It was diagnosed in May 2002 after a series of personal challenges, including the sudden and unexpected death of his brother-in-law who was not even 40! Initially he was treated initially with chemotherapy but ultimately in December of the same year my brother had an allogeneric bone marrow transplant. He made a fantastic recovery, he found a new job and all was looking good. For 6 years he was free of the disease, and even made a miraculous recovery from a seemingly unrelated stroke, after which he lost his job ....... Despite this he fought back. Even highly sceptical medical folk described his recovery as a miracle. He retrained and found a job he came to really love. He really was in his element, life was good and typically he set about raising funds and supporting others who had been similarly affected!! Sadly he has suffered a relapse. His leukaemia is back, this was confirmed in September and the chemotherapy has not worked as hoped, with 90% of cells still showing as abnormal. Whilst another bone marrow biopsy may show improvement it is unlikely and maintenance treatment is all that is left. Yesterday it was decided he is a potential candidate for a clinical trial, headed up by Dr Morris. I do not have details as yet, my brother will be briefed on Tuesday and although he states he has nothing to lose he does need to understand the side effects and treatment plan. He is the most wonderful person, he has given so much to society over the years, he has such a deep faith and loves his family so very much. If ever there was a travesty this is one, but never a complaint, never a why me or a what if ..... Has anyone out there been down the same 'medical road' - I would so love to hear from you. Thanks so much xxx 07/12/08 My brother enrolled on the trial, which certainly seemed to be working, all the usual symptoms associated with aggressive chem manifested themselves, and he lost his hair and even his eyebrows thinned, he remarked earlier this week how pleased he was they remained! His blood counts took ages to recover, and never really did, which of course was a problem. The plan was to undergo another cycle of the trial but unfortunately my brother succumbed to infections and then pneumonia. They all responded to antibiotic therapy, although evidence of Aspergillus remained in his lungs despite antifungals being given as prophylaxis. He managed to spend some time at home, but was then told the trial had not worked and had not made any difference at all and his days were numbered, maybe months, maybe weeks. He received this news as a fact, afterall, 'we are all going to go, I am just going sooner than I would have liked' ........ he was so very brave, he was not frightened although curious as to how he would actually go and he was so concerned for those he was leaving behind.. Sadly and much quicker than anticpated my brother died on Wednesday December 3rd at 21:42. He was so peaceful, very dignified and surrounded by his family, just as he wanted. He will be missed so very much but has left a multitude of memories with so many people. In life he was absolutely inspirational and will remain so for always.
Anonymous
  • FormerMember
    FormerMember

    Oh Debbie, I'm so sorry.  It is truly a Gift you gave your brother to be there with him all the way.  My heart is reaching out for you.  Best, Lori

  • FormerMember
    FormerMember

    Hi Debbie, although we have never spoken I have read your blog and those of others to whom you have offered tremendous hope and support in sharing your experiences with them.  You are an ispiration to me and others who are in the same situation and I offer my sincere best wishes and condolences to you and your family,

    Lynn x