How to cope when your child is diagnosed with a serious, chronic disease

It’s six months since William was diagnosed with FSGS. I think it is fair to say that I cried every day for about five months and it is really only in the last month that I have moved on to the next stage of coping. I don’t know what the stages are exactly, only that they seem a little like the stages of grieving. At first there was denial – could he have post-strep glomerulonephritis rather than FSGS, he had strep throat right before he fell ill, how do I know they’ve really checked, they have to be wrong about the diagnosis, young white males don’t get FSGS, they just don’t. Then there was anger – which might have started with the day he was diagnosed given that his nephrologist and I didn’t hit it off. Then bargaining – why couldn’t it have been me, why my son who was only five for God’s sake, why us/our family, we eat organic food, I shut the windows when the agricultural sprayer comes past the house etc etc. Then depression – that would be all the crying (although there was still daily anger and regular bargaining at this point). Now there is some sort of acceptance although there is still much depression and a great deal of sadness.

The trouble with having your child diagnosed with a serious illness is that there is no room for grieving because like all grief when you’re a parent you still have to care for your family, but in this case you also have a seriously ill child to care for and he has his own worries about his illness too. So I have had to remain upbeat and look in control when in reality I have been anything but. Some people say that if you are upbeat you will start to feel upbeat too and I think for some forms of standard depression that may be true, but in this case it just wasn’t true. As I wrote in my last post, life was in freefall and that’s exactly how I thought of it. I felt like we had all been pushed out of an aeroplane without a parachute and been told to find our own way of surviving. I have a lot of respect for the NHS (the UK National Health Service) and without it we would be facing probable medical-induced  bankruptcy and forced, like some American FSGS sufferers, to fundraise to find the money to cover the drugs my son needs to try and put off, for a little while, the day that he will need a kidney transplant. I don’t EVER want to be in that position (and is one of the major reasons we have put off our move to the US). But the NHS only addresses the clinical side and by that I mean the immediate clinical side. There has been no explanation as to his future, discussion of the long term consequences of his illness or talk of his likely reduced life-expectancy, and more importantly, no treatment to reduce the potential complications that he will more than likely face. (There are still parents of FSGS children out there who have no idea that life expectancy is reduced for post-transplant patients. I don’t think parents should be scared unnecessarily, but to not give them the full picture is wrong in my mind. Perhaps the NHS operates on an answer-as-the-questions-are-asked method so as to let parents and patients know gradually about their condition, but if that’s the case then, had I not bothered to ask, I would still have no real idea how serious his condition is.) I have had to push to have William tested for what should be standard tests, given the known complications of this disease. On the one hand it gives me something positive to do and stops me wallowing in helplessness, but on the other hand it doesn’t give me confidence that everything is being done to treat William as best as can be done. Kidney disease is fraught with unknowns: there is not one single drug that has been FDA-approved for treatment for this disease so the nephrologists are just using drugs by trial and error, seeing what works, what might be tried. That I understand, but the complications of kidney disease are quite clearly known and I should not have to research these myself and ask to have William tested and treated for them.

And then on the non-clinical side, there has been no support, none at all.

And all I can say to that is thank God for the internet and the kidney forums without which I would be a basket case by now.

What about William?

William is in partial remission which we have come to accept as good news. It means his kidneys are still being scarred, but at a slower rate than if he were not in partial remission so he will still reach end stage renal failure but not so quickly. As I have written before, our biggest hope now (other of course than finding a drug which will bring him into remission, or a cure) is that he will maintain enough kidney function so as not to need dialysis or a transplant while he is a child. Because no child should have to deal with that.

Day to day he is still almost constantly unwell. Because he is immunosuppressed he catches every virus going, despite every attempt to keep us away from bugs and keep our hands washed all. the. time. Sometimes it is tonsillitis, sometimes diarrhoea, sometimes fevers, sometimes vomiting which usually means dehydration and a stay in hospital. There is bone pain and there are headaches. Mostly he suffers a lot of lethargy and tiredness. He is almost certainly suffering some depression (which is difficult to treat when your kidneys can’t process anti-depression drugs). He was off school for five months but was able to return to school over the last half of the summer term and by the last week was managing mostly full days at school. We are hopeful that he will be able to attend regularly when school starts again and we have put in place a more formal arrangement (yet to be finalised though!) with his school for catching up when he is absent. His head teacher has made sure to inform us when there are serious infections doing the rounds in school. Knowing she is being proactive in helping us has made that side of dealing with William’s illness that much easier.

He is on Ciclosporin and, thankfully, has tapered his Prednisolone down from 55mg every day (a massive amount that has some serious long-term side effects) to 10mg every other day.  He will taper once more down to 5mg every other day in a few weeks and he will remain on that for the time he is on Ciclosporin as it is thought that Ciclosporin works better with Prednisolone (even if you haven’t responded to Prednisolone on its own). If he relapses and has nephrotic syndrome again he will go back onto the full dose of Prednisolone until he is not nephrotic anymore and then will start the long taper again. Six months on Prednisolone has taken its toll on his body but we pray now that he doesn’t relapse and have to go back on another high dose.

What about the rest of the family?

William’s illness has impacted us all. Harry has had problems, Ben has developed a stammer and only Edward seems to have been unaffected by it all.  These things are not uncommon when a child is diagnosed with a serious illness but I wish it wasn’t happening to us. I have tried my best to cope but I can’t help feeling I haven’t done well enough. But onwards and upwards, right? If I’m coping better over the coming months then hopefully some of these problems will mitigate.

Matthew is a kind and patient man. I don’t write much about our marriage here because this is a parenting blog, but he is coping with his son being sick, with me trying to cope with that and with his own father being terminally ill. It’s more than anyone should have to deal with really. Matthew recently trained for and completed an IronMan and has raised thousands of dollars for kidney disease research. It’s an amazing achievement and helps us feel a little bit more proactive in coping with William’s illness. His training has helped him have something else to focus on I think and is something I can learn a lesson from. As the boys get older, in particular Edward, who is seventeen months old, I really hope to have more time to write, exercise (I’ve been trying to get to a Pilates class for about the last four years!), read and get out with my friends. When I think of our future, I try to focus on those things rather than the bad things we will inevitably have to face.

Have you any suggestions for coping, even if you haven’t had to cope with a child who is poorly? What would you try and do if you were me? (And please don’t feel like you can’t comment if  you’re not in the same position!)

Photo: http://www.flickr.com/photos/duncan/ / CC BY-NC 2.0

Tagged as: FSGS, kidney disease, nephrotic syndrome