Imagine having a simple blood test as you were not feeling great only to find out that you have Leukaemia (blood cancer). That is precisely what happened to my husband Ian, a devoted father of four. On the 17th of August 2017, our would was turned upside-down, irreversibly changed. Only hours after having a blood test Ian and I were contacted by our GP who informed us that Ian will need to be rushed to hospital as he has acute leukaemia.
Over the following week further tests confirmed that Ian has Acute Myeloid Leukaemia (AML) and also a specific subtype which is very difficult to treat successfully and has a very high relapse rate. Ian’s full diagnosis is AML, FLT3-ITD, Chromosome 6;9 translocation. His treating consultant delivered the news that this specific subtype of AML is rare and that Ian is likely the only person diagnosed with it in Australia this year. The specialist also informed us that Ian might only have a year to live and that less than 10% of people with this diagnosis survive to five years. So in all likelihood this is a terminal illness. The only chance of controlling the condition longer term (trying to get to that five years) or the remote possibility of a cure can only be achieved through a stem cell transplant. This is a very complex process, which has many obstacles, where things can go terribly wrong and there is absolutely no guarantee of long term success.
So far Ian has undergone the initial stages of treatment, called Induction Therapy. Induction therapy started on the 29th August, after initially being delayed in order to treat several infections that Ian had picked up in the days prior to his diagnosis. Induction therapy was a massive dose of chemo designed to kill off the cancer cells in his blood to control the condition in preparation for further treatment. We were so very lucky that Ian’s body responded well to the induction therapy and he achieved ‘Complete Remission’. This meant that there were no visible cancer cells in his blood at day 27 after induction therapy. We were delighted with the news.
Ian came home and we spent two delightful weeks together as a family again. Delighting in the simple pleasures of eating a meal together. Taking a very calculated risk of going out as a family to celebrate our eldest daughter’s 18th birthday, a few days early, but as a family, as we do not know what the future will hold.
Having achieved complete remission meant that Ian could progress to the next stage of treatment, which was Consolidation Therapy. This started on 6th October. This was a smaller dose of chemo, designed to control the cancer while a suitable stem cell donor was found. Siblings are usually looked to initially to see if a suitable donor can be identified, as if they are they can usually provide the closest matches. Which is important for lessening the likelihood of rejection. However, neither of Ian’s siblings were a match. We were devastated. However, not long after two international, compatible donors were identified. We were delighted and at the same time petrified by the news.
As the doctors have described the transplant process is a ‘one-way-street’. Once it’s started there is no going back. No matter the result the process cannot be reversed. The transplant process we were told will start between the 22nd and 24th of November 2017. With the transplant itself likely scheduled for the 30th of November 2017. The transplant process will initially involve Ian having such high doses of chemo to destroy all his own bone marrow. This process can be fatal due to systemic toxicity or organ failure and although it can be stopped, if that was to happen, the treatment would be palliative from there on. We were also told very confronting information about the likelihood of the transplant actually being successful as the donor cells (graft) can reject the host (Ian’s body) and the host can reject the graft. Medication can be used to try and limit this, but only if the response is not too severe and only for a period of time. So at the moment, while Ian is once again home with us, we are spending time making memories, just in case.
The doses of chemo that Ian has already had have affected him not only physically, but also mentally. As he describes it his thoughts are ‘spaced out’ and he is not himself. ‘Chemo-Brain’ has definitely kicked in.
As the process wears on it has become very clear that Ian’s needs have changed and he requires a lot more support not only emotionally while in hospital, but also at home, to be safe and to participate in daily activities. This means that our initial thoughts of me working full time to support the family financially may not be possible, as well as the mounting bills, medical, transport, parking etc. I would dearly love to be able to take leave from work to be able to spend whatever time we have together with Ian as a family. To be there to support the love of my life, through the unbelievably daunting road ahead, whatever our future may hold. I cannot imagine having to leave Ian in hospital or at home by himself for him to face the daunting task of spending day after day all by himself, while dealing with the effects of the treatment or recovery, while I rush off to work. That would be just devastating.
A donation of any amount, even the price of a coffee, will all help to make our family’s time together easier. So we can concentrate on helping Ian fight this terrible disease and to spend precious time together.
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