Hi, I don't know if anybody will read this, but I just need to write it anyway.
Last May (the 26th to be exact) my clever, funny, just-turned-five, crazy dancin' little boy, Miller was taken to hospital by his dad while I waited at home with his twin sister. He had been having headaches and vomitting in the mornings for a few weeks, and after several frustrating visits to the G.P. (Is he being bullied at school?/ It could be migraine...etc) we finally got an emergency referral to a neurologist.
After emergency CT showed encephalitis he was sent for MRI. My partner called around midnight, and I could tell from his strangely calm tone that he was choosing his words very carefully. They'd found a mass in Miller's brain. The reason for the headaches and vomitting was that a tumour was blocking the forth ventricle and fluid was building up inside.
Needless to say this was a devastating thing to hear and the weeks that followed didn't get any better. The next day after dropping his sister at school I went straight to the hospital to see Miller and was told he would be having surgery that day. I was still in shock but had to keep it together enough to somehow explain all this to my son in a way that he would understand and wouldn't frighten him. I remember wondering, how? How am I going to do that in the next 45 mins before they take him down, when I don't even understand it and I am really frightened? So, I sat with him and the surgeons and explained that he had a little lump in his head and that the doctors were going to take it out, but that it wouldn't hurt because he would be asleep. I have never felt more like a fraud in my life. But my best boy sat and listened and looked at everyone in turn, then he smiled a little smile and said ,'ok'.
The week or so after surgery was pretty grueling, Miller was obviously in pain and discomfort and his balance wasn't good. We were also waiting for the results of the biopsy of the tumour, was it malignant or benign? Nobody used the word cancer, not yet anyway.
As you've probably guessed it turned out to be 'malignant'. Miller was diagnosed with Medulloblastoma. Then later with metastases of the spine. It just seemed like blow after blow. We were told he'd need Radiotherapy with chemo for 6 weeks, then more chemo for a year and that it was a one shot chance. Recurrent medulloblastoma is typically fatal. So he had a portacath fitted and a gastrostomy tube (which, having seemed almost like an assault to my child's body at first, turns out to be a godsend now - funny how your perspective changes over the months).
The radiotherapy went ok, he was so good (mostly) for the radiologists and the lovely play therapist helped him paint his mask into a spiderman one, so when he had treatment he'd turn into a superhero for 40 minutes. He even started to learn to play the drums with the cool music therapist who usually taught the teenagers, but Miller (and sometimes his twin sister too) was so brilliant at it he kept asking him to come back in to jam with him!
Then he started chemotherapy. If you're reading this then you probably know how that is, whether it is you having it or someone you love. Its really tough. There really isn't much else to say about it. Well not much good anyway (nausea, tiredness, neutropenia, transfusions, antibiotics.....to name a few). Miller was becoming more and more withdrawn, and also more reluctant to have treatment. He was initially not very keen on it (to put it politely) but always tried his best to do what was asked of him by the nurses despite being really scared of needles. However after Christmas this year he started really not complying with his treatment. It was a struggle getting him to hospital and he would cry and scream whenever the time came. This was obviously very distressing for him and all of us. But I thought it was just him being absolutely fed up with treatment and feeling like rubbish and not being able to ride his bike anymore. Then on his and his sisters 6th birthday, as I was helping him upstairs to show his best friend his new drum kit, he mentioned in passing that he could see two of everything.
He was due a routine scan this februrary as it was the halfway point in his chemo. A week or so later his consultant called us in for a meeting. The treatment had failed. Total shock. Miller's scan showed that he had a coating of tumour cells all over his brain and down his spine. He is not going to be cured.
I just cried and cried. To be honest, in between doing my best to act like everything is ok around the kids, that's pretty much all I've been doing since. My partner, Miller's dad, has been tirelessly researching. Seeking second opinions, looking at new treatments. Miller is basically receiving palliative care now. In the last few weeks he has changed so much. He used to love to dance and go to museums and chat about this and that. He used to write his own stories when he was four. On the hospital ward there was a man who stayed with his own son, who used to call Miller 'little Professor', because of how he used to talk (like a little old man). Now in the space of just a few weeks he can barely string two sentences together, cannot walk, can't write his own name, and I'm so profoundly sad I can't even find the words to express it. I feel as if my boy, the one that was here the other week has just disappeared right while I was looking at him, and at the same time he's still here. It is a very difficult thing to explain how you can miss someone who is right in front of you, and yet that is how it feels, everyday.
And yet, he is still my boy and I love him so painfully much that, alongside my partner I will keep looking for things to help him, we know that the odds are low but we just can't bring ourselves to give up. I'm sure it is the same with all parents in this situation.
Wow. I never intended to write this much, and I'll admit a glass of wine may have occured while writing this. I guess I needed to get this off my chest.
If there is anyone out there reading this or anyone who finds themselves in a similar hopeless seeming situation and they would like to get in touch, please, please do.
Syreeta x
