The Thirty Ninth Time

Awful awful, heartbreakingly dreadful week. Toby, my 19 year old who tackles life head-on like an out-of-control speeding tornado but much more fun, is extremely ill and in hospital, subdued, so terribly ill, frightened and confused. Toby is also severely learning disabled, with the understanding of an average two-year-old, and with a similar level of speech - he can talk in one and two word sentences, but can only talk about the concrete real things in absolute terms, feelings, abstract concepts and the if, buts, maybes and perhaps of the world are completely beyond his comprehension. 

I thought having cancer was tough, but this is so much tougher. Toby is the only person they can find in the whole world who has his particular medical condition, so there is no expertise, no research, no cutting edge treatments, no tried-and-tested treatment protocols that his medical team can facilitate to make him better. 

Toby has a long history of baffling the medical profession. When he was little, we spent 
most of his first 6 years in hospital, across 38 separate emergency admissions. He would just get progressively sicker and sicker. While the team in charge of his care tried everything they could think of to make him better, I would watch him slipping away by the hour. It was always a race against time, and Toby took us to the very edge over and over again. During each of his 38 admissions, there was at least one crisis point when no one expected him to survive. Each time, from somewhere, he found the Herculean strength to turn the corner at the very last minute, but there were never any guarantees that he would do it every time. 

It's been well over 10 years since we last had a life-threatening emergency with him, everyone thought it was a thing of the past, but you know, I've never been able to take my eye off the ball with him, every morning all through his life I just hope that he'll still be well by the evening. 

Now we're back in the same place, watching and waiting and hoping and praying that he can turn it around one more time. He has now been in hospital since Tuesday, and we are watching him deteriorate by the hour all over again. It's like he was at the top of a very long, steep slope and he's hurtling towards the bottom at a terrifying speed, and they still can't find out what's wrong with him. Unless they can catch him while he's falling, and push him back up the slope with the right treatment very soon, in a day or two he's going to be in real trouble. At the rate he's going, and based on previous experience from all those years ago, I reckon by Wednesday he will be in intensive care on a ventilator, or Heaven forbid, even worse. 

Being Toby's mother has always been a very frightening and lonely experience. Over his early years, by default I became his expert, and I could always see, way before the doctors could tell from his clinical signs, just how much trouble he was in and what was needed to reverse it. Toby's clinical signs are completely at odds with everyone else's, and that's just part of his condition, but it takes a very special doctor to be confident enough to go against everything they have been taught and disregard the findings of blood tests, X-rays and all the other test results. It's also hard for a mother to convey medical knowledge and experience to a new medical team without coming across as neurotic, or pushy or just downright mad. It often felt that they were looking for a needle in a haystack, by laboriously ticking off one by one the 100 tasks on a checklist. They'd be on Number seven or eight, and I would have rushed ahead and found it at about Number 83, shouting "look, here it is, come and get it". They would not be able to grasp that someone completely without medical training has found it so quickly and easily, so either I must be fibbing or a complete loopy-loon. 

Eventually they would get there, and I would say, "But I told you that 2 weeks ago". The number of times I had very senior Paediatricians apologising that I hadn't been taken seriously eventually paid off, and they listened. Sometimes that was scary too. Always before I took him to hospital I would have tried every trick in the book I could think of the reverse the onset of illness, and when I was completely stumped I'd want them to have all the answers. When they instead say "And Mum, what do you think we should do first?" it can be quite daunting. 

This time around it's the first time he has ever been in the adult part of the hospital. New doctors, new nurses, new ways of doing things, new protocols, it's all a huge learning curve for me, and of course, for the doctors. My biggest fear was that they would simply not entertain an "adult" being allowed to have someone with him around the clock to comfort his distress, advocate for him, and to keep him safe. On that score they have been marvellous. The hospital now has a specialist Leaning Disability Liaison Team, and quite by chance, two of the four-strong team have worked with Toby in the past and love him to bits. (You would need to know Toby to understand this - everyone who is open to getting to know him ends up loving him to bits, because he is so hilariously witty in a very slapstick way, so gregariously loving to everyone, and he has more personality and character than virtually anyone else you'll ever meet!). They have managed to install a recliner chair by his bed for someone to sleep on, they have acquired a parking permit for us, they have even managed to ensure we get teas and coffees offered to us on the same basis as patients. They have firmly established that we are not Toby's Visitors, we are Toby's Carers, or what I prefer to call us, "Toby's Team".

I can't thank my fellow members of the Toby Team enough. There are 9 of us altogether, and between us we are with Toby right around the clock, family and friends that are trying to let Toby understand that he is not alone during this horrible time. 

I'm out of practice at knowing exactly what's wrong with him, and how to treat it, but I've got a fair idea which I've shared as gently as I can. This new team are as committed, caring and on-the-case as you could hope for, but I have to respect that they are on a steep learning curve too - Toby is as frightening and new to them as they are to us. They are well on the way down their checklist, and let's just hope they reach the right needle in the haystack in time. 

Here are some pictures of Toby, amazingly all 5 of them taken this week. Monday evening he was so well, and so handsome in his new suit and bow tie at his very last ever school Prize-giving evening. By the middle of that night, he was on his way down. The last photo of Toby was taken on Wednesday morning, just 36 hours later, all happening so heartbreakingly quickly. 

Too excited to look at the camera

He was loving the applause

So many certificates too

Looking at his "Leavers Book" with his brother, Adam

 

Any prayers or loving thoughts sent in Toby's direction right now would be so gratefully received, thank you.