Dans battle with leukemia & GBS. My journey back .

Hi Dan here. I am doing something that I find very difficult, I am humbly reaching out to family, friends, extended family/friends and to people I have never met, for help. Prior to 2018/19, I was a healthy fulltime carer for my wife Ellen, who is in pain 24/7, 365 days a year.

And this is my story … I decided it was a good idea to drive to my wife’s general practitioner to pick up her scripts, despite Ellen explaining there was no medical appointment, it became my mission to look after my wife. Next thing I remember is my wife’s GP standing over me at her practice. I recall sirens blaring, looking down at myself lying on the stretcher in the ambulance as the ambos worked methodically on me. And that’s all I remembered for some time.  Then I got hit with a series of life threatening diseases; PNUEMONIA with SEPSIS, LEUKAEMIA and GUILLAIN BARRE SYNDROME

My battle for survival began with my ambulance trip to emergency resulting in ten days in Intensive Care with 5 teams of doctors and specialist nursing staff battling to keep me alive. A diagnosis of PNUEMONIA with SEPSIS was reached. After too many blood transfusions to count, due to extremely low white blood cells, a bone marrow aspiration revealed LEUKAEMIA, requiring chemotherapy.

I was through chemotherapy, and left with a lifelong condition to be managed. Six weeks later I had difficulty with balance and walking, I remember brushing my teeth and ending up lying in the bath.  My daughter laughed when she saw me dragging myself across the floor with partial limb paralysis, due to my determination and refusal to ask for help - she thought it was chemo symptoms. My wife was forced to call an ambulance and while I was being stretchered from the house, still feeling positive, I asked them to scratch our manual car (which I can no longer drive) with hopes of an insurance claim (sadly unsuccessful).

After intensive consultation, a lumbar puncture was required which I was told would be painful – 2 doctors and four attempts later it was more than painful – it was pure agony. A diagnosis of GUILLAIN BARRE SYNDROME (GBS) was communicated.  GBS is a fearsome syndrome which damages the peripheral nervous system causing intense pain, muscle weakness and difficulty breathing - in some cases breathing requires intubation and full body paralysis results in the inability to even open your eyes  

After 14 days in acute care, Intravenous Immunoglobulin (IVIG) treatment halted the spread of GBS. I was completely dependent, bedridden with limb paralysis, requiring a hoist and help for everything. I felt vulnerable when transferred to a rehabilitation centre and realised I was spending my birthday, Christmas and New Year in medical facilities. My rehabilitation was progressing until I had a full relapse, with limb paralysis, requiring ambulance transport to emergency and a second IVIG treatment to halt the progress of the GBS. I was back to square one like an infant learning how to move, to stand, to take small steps in the hydrotherapy pool – I did manage to terrify my therapist by mimicking drowning.  

After months of intensive rehab I was released to Ellen’s care, using a walker, and felt positive. That all changed when I awoke one night at 1am hearing movement and voices in the lounge. Intruders and I can’t get out of bed unassisted – all I could do was call the police and hope for a rapid response. Luckily the intruders were satisfied with what they could take from the lounge/ kitchen area and the police arrived to an open door and a trashed living area – how’s that for feeling emasculated. I was left facing 2020 with a second lifelong condition to manage and the need for both mental and physical rehabilitation.

Then Covid 19 arrived, resulting sadly in many lives lost, and given our co-morbidities my wife and I were forced into home isolation, yet still needed Covid tests (which luckily were returned negative).

That has been our 3 years of hell and I am left facing ongoing pain medication, rehabilitation, blood tests and future treatments for both LEUKEMIA and GUILLAIN BARRE, which is likely to return given my relapse and second IVIG treatment, while Covid has restricted safe access to hydrotherapy and rehabilitation resources. 

Please help us keep fighting. Your compassion and support are sought, with funding of $100,000 for;

- Rehabilitation - physical therapy, orthotics, home exercise equipment, pool/gym fees

- Automatic vehicle - to replace the 21 year old manual car we both struggle to drive.

- Stable accommodation – we have an uncertain rental, unsuitable for disabilities, which has recently been sold. We have already been forced to move 6 times in the last 10 years.

- Spa pool – for exercising extremities and help with transitioning off nerve pain medication.

Thank you, and for those unable to provide financial support, please give blood (if you can), given I, and so many others past and future, need a lifeline including multiple blood products.

I also acknowledge my gratitude and debt to all the health professionals and support staff, I would not be alive today without their efforts during my multiple near death experiences.