How it began

Our journey with AA began almost three years ago.  It seems like a lifetime ago now.  Our son James was just 19.  He developed a purple rash and black spots in his mouth.  I took him to our GP.  We went directly to our local hospital where he was admitted to the Macmillan cancer suite.  His platelets were 4000.  A week later we were in an ambulance on our way to King’s College Hospital.  We were told he had aplastic cells.  I remember being relieved it wasn’t leukaemia.

A week later we had a confirmed diagnosis and ATG began. Things moved fast because of the severity of the AA.  James had no neutrophils at all throughout his illness.  ATG went well and he was discharged.  We were terrified.  My husband cleaned our house until his hands were almost bleeding, 48 hours later James was in A&E with an infection.  Five weeks into our journey we heard that a 10/10 donor match had been found for James.  Professor Marsh decided to go straight to transplant as James’s neutrophils remained at 0.00 and he was continuously struggling with infection.

As parents it felt like we were completely redundant. We couldn’t save him or protect him and because he was 19 all decisions about his health were his.  What James felt, he never said, in fact there were times when he didn’t speak at all. On the 22^ndJune 2016 James had his stem cell transplant and miraculously he came home three weeks later.

Following treatment 

We were elated and so grateful to the young man who was his donor.  I took a month off work and went to King’s with him 3 times a week.  He barely had the energy to endure the long visits. He often needed fluids and magnesium.  All the time he never really opened up about his feelings and this worried me.

The illness had isolated him from his friends and family. I wondered what he thought about when he was alone in his room in hospital.  There were a few admissions to hospital but gradually he began to manage his drugs himself.  What saved him was finding a job at our local shopping centre.  All his friends had gone off to university.  He had lost his social network completely.

In September 2017 James’s next milestone was going off to university in London.  We were so proud.  Although I was still worried about his mental health.  In November 2017 James was told he could stop taking cyclosporine.  Then he harmed himself.   All my worries about his mental health hit me like a moving train. James was diagnosed with post traumatic stress. 

James had counselling and to be fair he saw a counsellor at King’s while he was there.  I suppose it had to be the right time for him to want counselling.  James is now having psychotherapy from a PTSD expert and we can only hope he will recover fully.

Mental health issues around serious illness are complex. The medical doctors do their best to heal the physical self but wellness is about the whole self.  For young people with few life experiences a serious illness is hard.  There is that cross over between being a child when medical decisions are made by your parents and then suddenly you are 18 and old enough to make those decisions yourself. For all of us it is a minefield, even with the positive health outcomes James has had, the journey is a bit like climbing Everest!

Our lives are now filled with gratitude, to our wonderful NHS, the dedicated doctors, nurses and medical teams.James’s donor.For James, for his bravery and never giving up.For life and all it’s up and downs.We are better people because of aplastic anaemia and what our experiences can do to help others….

Blog from Jackie