"Probably got help from their Mum"
"(who got help from her Mum)"
https://www.youtube.com/watch?v=PPvRsLWlDXw
First nod to the genius of Mr Dury
Just as things were beginning to settle down with my sons health condition we had our first appointment with his new haematologist. All went well. The second appointment took me by surprise. "We think this was a transient illness, we need to increase the days between injections, gradually decreasing the number he has, and hopefully stop them altogether" Over my dead body. She could see the shock and terror on my face and so could my young man. Then she said "If you can't cope with this we'll have to get someone else to do it" Don't push me. I didn't rise to my anger, instead I asked what had happened to the neutrophil killing anti bodies and how could the diagnosis suddenly change from Autoimmune Neutropenia to "a transient illness". She sat and explained that there were no longer detectable antibodies in his blood samples, that all possible tests so far had been done and had come back negative and my sons case had been fully discussed by a range of experts on a multidisciplinary panel. Game changer. I nodded and said "ok then" "what can I do to reassure you?" she asked "You can't, I just have to trust you" I said.
She was right, a lifetime of study and knowledge under her belt had qualified her to make a bold decision to "test my theory" My son is now injection free and so far he is holding normal levels of neutrophils. She has my trust. She now admits that when she saw myself and my young man in those early visits we were both still in trauma and that I need the facts first before making important decisions. She has explained that, although they can't say for sure, they think a virus caused his bone marrow to become suppressed, possibly the B19 human Parvo virus. Myself and my son are both part of the 100,000 Genome project at Kings just in case there is an underlying genetic reason why he was more susceptible to the virus. This makes absolute sense for me from a Mum point of view as I've nursed him through some illnesses before that have hit him hard, he always seemed more susceptible to illness and at times he needed antibiotics to fight them off.
With all this in mind I felt confident enough to leave my young man in the care of my wonderful Mum What am I going to do without her? and get way for the weekend to a science and music festival. There on the programme was a talk by an expert Immunologist called Daniel M. Davis. I found myself queueing for his talk. I was gripped. He explained the wonders of the bodies immune system so I bought his book; The Beautiful Cure. Signed copy. Stranger things
It says:
"But one of the especially wondrous things that Neutrophils do for our defence is that they shoot out a sticky web, or net, made from strands of DNA and proteins, to capture germs moving by. Think Spiderman, but on a minuscule scale of cells and germs. These webs contain antimicrobials which kill the captured germs"
So cool.
Uni finished some time ago and son did well, but due to his illness with too much to squeeze in and get up to speed on in so little time, he has some resits to do. The Uni have been amazing, their knowledge of reasonable adjustments, willingness to meet regularly with me and keep the lines of communication open and flowing have been refreshing and welcome. He's now practising hard and hoping to pass. Then on to his second year. Crossing everything. He recently explained to me that he see's all the notes on the bass fret board as colours and that's how he learns. This is a form of synesthesia, common in people with Autism. He doesn't learn in the normal way so notes on stave's and timing signatures are a little abstract to him. Square peg, round hole, as always.
Working in true partnership with health and education takes openness and trust from both sides. I'm lucky to have found this.
Meanwhile, we watched War of the Worlds at the weekend (the Steven Spielberg, Tom Cruise one) and the last monologue made my son laugh;
"From the moment the invaders arrived, breathed our air, ate and drank, they were doomed. They were undone, destroyed, after all of mans weapons and devices had failed, by the tiniest creatures, that God in his wisdom put on this earth, by the toll of a billion deaths, man had earned his immunity, his right to survive amongst the planets infinite organisms. And that right is ours against all challenges, for neither men live nor die in vain."
"The martians died of Sepsis" said my young man joyfully.
I'm still reading and learning, I may have to read the book twice.
The enormous amount of work and people who contribute to solving the immune systems never ending complexities in the hope of providing new cures for cancer, autoimmune diseases, Sepsis and much more are not often talked about. The scientists devoting their lives to finding these are my new heroes and so they should be for all of us.
"Clever Bastards"
