This year has been an anxious, stressful, high speed car chase with so many twists and turns but with a goal, one sparkling golden hope. University for my young man and we got there. We battled for support at college that wasn't happening due to an 8 month wait for an uptodate EHC plan, he got it and achieved a merit in his course. Four hours of practise and hard work every day meant he passed his level 8 bass guitar. A frantic last minute APEL submission secured his place. He was there. A university student. Floating on cloud 9. Disabled Student Allowance granted and support heading his way.
We allowed ourselves a moment of pride and celebration. All those years of fighting for support and the appropriate aducation seemed worth it. This outcome had exceeded all our expectations.
Neutropenic Sepsis is scary, I'm not going to explain, google it. I'd never heard of it until a month ago. One week before the start of Uni the first bout hit my young man. He recovered and after three days in hospital he was discharged. He made one of the Freshers week events and the first week of Uni. He's not resident, he's commuting. Social interactions and independent living skills are not sufficient enough yet to cope. We will work towards living away from home and living with other students bit by bit. I rented an appartment close by the University for the first few days so I could be close to the student support people if needed and so he wouldn't run himself down with the travelling and could recover. Close shave. The first week had been a success.
Then he got really ill. Back in hospital again. This is getting more serious. No neutrophils. How I hate those little shits. Canula's; how my young man hates them, and blood tests and scans. But you'd expect that but not a Bone Marrow extraction. Never that. Screaming, no one should scream like that and no parent should have to hear it from their child and hold them down. Then so much worrying. You learn to only think positive not to even consider the worse. It's going to be ok. Discharged and well and back at Uni waiting for results. I drove him there and back not wanting to leave his side. The dog got some very long walks by the seaside, he was happy.
Then he got really ill again. He started to panic and worry "Whats wrong with me?" "I'm not going back to hospital" Swearing and shouting and tears in A & E and then another canula and antibiotics. But then test results. No sinister underlying reason, healthy bone marrow. Breath again.
So after another four days in hospital we're home again with a diagnosis of Severe Idiopathic Neutropenia, an outpatient appointment at Kings, daily injections to get those little neutrophils to work and more antibiotics. I'm scared and I can't show it but more than that I'm so angry, rage at the unfairness. Why? and why now? After everything. Young man is massively anxious about having another bout and can't understand why this keeps happening. He just wants to be at University.
Oh and we've got his Employment Support Allowance tribunal this Tuesday. No idea if we're gonna make it. We've waited 7 months and now we may have to postpone. All in all he's been to three assessments this year plus and assessment by an educational psychologist so that's four in total. The Ed Psych report was so important for support at college and University but so far it hasn't persuaded the DWP to change their minds. There is much more I could say about all that but I haven't got the energy.
Right now we're living day by day and only allowing positive thoughts and hopes. It's times like these you learn the true value of everything you hold dear.
