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.
I am so sorry that you and your family are going though this ,it must be very hard , i can only imagine how you are feeling, i dont know anything of this type of cancer but reading your post has bought tears to my eyes im sending you lots of possitive vibes & hugs ,stay strong i will keep you in my thoughts
love &best wishes
Good vibes and kind thoughts of all descriptions are basically whats keeping us going right now. It really helps.
Thank you, so very much,
I cannot begin for one minute to imagine what you are going through right now at this very minute - I have been on a cancer journey with my husband so I understand the depth of feeling, helplessness and frustration and unfairness of all of this. You write so deeply that I feel I know your son and family. Keep holding on to every day do not think about tomorrow just live for today and now and be very much present.
Do not give up - I wouldnt either, in fact, I doubt anyone on this site or in your position would - we are all with you and we are not giving up either. Take strength from that. and yes, definitely keep looking for things to help him, there will be something.
Sending you strength,
your words really touched a nerve. No one can really really understand or imagine what you may be going through, except another mother; as we alone have carried our child inside our bodies, they have life because of that, we feel so part of our child and it's us they turn to to make it all better.. only this time we can't. And for each of us mothers it's a different experience.
I so feel the same when you say how you miss the person even though they are still there right in front of you. I feel like I've been grieving since my daughters diagnosis last Jan 2011, even though she is still alive. We never know what a day or week will bring, she's been so close to death and come right back to us. We ask ourselves questions such as- have we had her with us longer as her tumour wasn't found when she was a child and was left to grow, so is the end soon? Or would it have been better to have found it and try to remove it or would that have made her more ill? Or would all the years her behaviour was so very difficult have been easier to handle knowing why she was the way she was? And of course- 'Is she going to be ok' the biggest question of all that no one really wants to know so I research and find out stuff I wish I didn't know. We grieve for the daughter that she would have been without the tumour, how her life would most definately been very different- the terrible decisions she makes all the time as she isn't thinking clearly. I've aged a thousand years and cried a million tears in just over a year..
Thank you for what you have written, as many of us will be feeling like you but unable to articulate it any more.
best wishes, Sue XXX
Your words brought tears to my eyes honey, i cannot begin to imagine what you are going through, but i can tell you that there will be lots and lots of us sending you and all your family so much love, good wishes, positive thoughts and vibes, and prayers in your coming journey.
There will always be someone on here for you to talk to my love, and this will be a place for you to let out all those emotions that you will have to hold inside you, all the ranting you will need to do at some stage, all the tears you will need to cry, and where you can write down you inner most fears that are whizzing round and round in your mind. Let this be your place to come and just let off steam, it is so hard to keep a normal, happy face in front of your children, family, friends etc, but you must have somewhere to let it all out, and let this be the place for you to come to.
Everyone is a friendly bunch here, and i hope you feel you can get some support from us all. Don't be scared to ask anything, or to say exactly how you feel, because thats the best thing you can do, let it all out. We will all be here for you, you will find people on here at all times of the day and night, like many others on here, i struggle to sleep at night, so am often flicking through this site, and on the chat room as well.
Do keep us posted on how things are going, and all i can say is i pray you find something that can help your lovely little boy, i really really do. Sending you all so much love, courage and hugs...
If you love someone, or have ever loved someone with cancer then I'm sure in my bones you can absolutley understand what I'm going through. Your words about staying present and holding on to every day have touched me, and your positive comments have given me strength to keep going.
Thank you, thank you and thank you again,
After reading your post I felt I had to read your profile to find out more about your daughter. When you write about her behaviour and thoughts about how her life may have been without her tumour, I so relate to you. Times without number I have done what my partner and I refer to as 'the walk of shame' from hospital wards as I see other parents fondly thanking nurses and doctors for their care. I have felt unable to do the same as Miller's behaviour had become so erratic and distressing we just wanted to get the hell out of dodge with as little fuss as possible when given the go ahead to go home.
I am so sorry for what you and your family are going through, the uncertainty, the wishful thinking, and the pain of wondering about your childs potential outcome had they not been diagnosed with a brain tumour.
Thank YOU for what you have written.
If you ever need an ear, or a shoulder, anytime
Thank you for your message, I have a lump in my throat as I am writng this.
Having to support your child through this process is a pain that cannot be named, whatever the outcome. Life goes on but will never be the same. I know instinctively from your post that you understand this.
I wish your son and all your family the very very best and send you hope and strength and love,
Can I just first say that I am overwhelmed by the fact that, in the midst of all the pain you are going through personally, you took the time to be kind and thoughtful and insightful in your your post to me.
I have read various posts and threads on this site before and wanted so much to find a connection with someone, anyone who was going through the same situation. Then I realised that whatever we are going through, we ARE the same. Pain and anger and Its-not-fairness is universal. But so is kindness and understanding and generosity of spirit. So I thought I would take a chance and write down my experience in the hope that someone else would find that connection. And what a difference it has made.
Your message has fortified me.
The love and courage and hugs you sent to me, I send back to you ten thousand fold.
And as for coming on here to let it all out and ask ask my fearless questions at odd hours, well, I may just take you up on that!
Wishing you health and strength,
Thank you for sharing this. I am 4 weeks into finding out my 1 year old daughter has a big tumour in the centre of her brain and has caused her to go partially blind. It is inoperable and we have just started chemo. I still don’t know what the future holds and it is terrifying. Sending you positive vibes and love. Life is painful and doesn’t make sense most of the time but it has to get better right? Lots of love
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