Milo Apr 2021

Pain is a subjective thing I guess. People talk about the most painful thing that’s ever happened to them, childbirth and broken bones normally being top of the list. However, I can’t imagine anything worse than watching your own child in pain. I spent a few days this week laid in bed with Milo because we weren’t able to get his pain under control. He was either in agony or the meds had him totally knocked out while I lay next to him worrying about what this new turn of events means.

I promised myself when he was diagnosed with this brain tumour that I would not let him go through any painful treatment just to prolong his life for a little longer if that treatment would also make his life miserable. It’s a decision many might disagree with and I respect that. I understand only too well that there’s a want, need and responsibility to give your child the very best options and chances of survival.

But I also have the experience of having gone through this kind of treatment on the sidelines twice, both times with the same heart-breaking and life changing outcome.  So, my words when I met Milo’s oncologist and Macmillan nurse for the first appointment last year were very clear: I am willing to do everything for my child to survive, but I will not prolong his life for a few weeks or months if his quality of life is seriously compromised. It is the most painful and brave words that have ever come out of my mouth and I have no way of knowing if I am right, and am I right to choose so drastically what is right for my 5-year-old son?

Of course, I believe that I am; as parents we constantly make choices for our children – it’s just that when you make actual life or death choices for your child there is no way you can ever come out of that with your heart, your mind or your beliefs intact.

It has broken me having to make these choices and having to make them alone without Ian here to talk to, but I stand by what I have said so many times: treatments for brain tumours are horrifyingly harsh on anyone, let alone small children, and had I known Oscar would die I would never have let him have some of the treatments he had to endure.

This, of course, is irrelevant as hindsight is wonderfully cruel. Ian and I had to let him have the treatments because at the time those treatments were definitely right for Oscar and should with 70-80% certainty have saved him, even with the side effects he would have had to live with. And we would have taken that, of course we would, to still have him with us and so would he.

But now is different because there is no treatment for Milo that will save him from his brain tumours, the treatments they are suggesting may, or may not, only prolong his life a little longer. I have a lot more knowledge of the genetics behind his particular illness and how limited his treatment options are, so I take the hard road and trust I am right. I give up maybe a few more weeks or months with him, which is precious time for me and his brothers, but we spend that time together at home and not split up by regular hospital visits, daily General Anaesthetics(if you have ever had one and remember how tired and sick it made you, imagine having 30 in a row), sudden frantic nights apart, spending every evening online trying to find an answer, the stress of waiting for a phone call that will bring everything crashing down again, nerves and tempers constantly frayed and all the other things that come with this life that we all live.

This may be hard for others to understand, and I find it hard to write this down knowing others may judge me for it, but I am not so sure it wouldn’t be selfish of me to do differently. I have a clear picture of what Oscar and Ian would tell me to do and I choose to trust that. The fact that I don’t have to fight his doctors for the right to not push every possible painful and invasive treatment at Milo just supports my thinking (and we have the support of the most fantastic doctors and nurses I have ever met who truly come to work to support and do what’s best for every child, saving many and somehow saving families even when losing).

Don’t get me wrong, Milo is still having treatment and it’s the reason why he is feeling so ill.  Well, it’s one of the reasons anyway – the other possible reason is that the disease is already progressing and even with his current treatment this is going faster than fast. Either way I am watching my child in pain, but at least he is in his home, with his family and not laid in a hospital bed going through agonising and traumatising treatment that we know will only end with the same outcome.

So, we lay in bed or on the sofa cuddling up and chatting when possible and who knows; he might just take a turn for the best and be out on his bike again or chasing around playing superheroes – he has done this plenty of times before. And if he doesn’t and he stays inside, well then I will have given him a more gentle time with us all together.  We watch films, talk about the fun times we’ve had and our plans for the future, playing games when he can, baking and sitting outside. I know my child best and I am doing what is best for him and for us. It is terrifying that we are not any further with treatments – although we have still come a long way since Oscar died. But for my boy we are sadly not far enough.