My beautiful Joseph with his blue eyes, ready smile and arms always open for a hug or a tickle fight

[Trazzletoes]

He has survived the most horrific cancer treatment with his smile, joy and love intact. Unfortunately the neuroblastoma has survived too.

Hope is awful.

"Hope deferred maketh the heart sick."

Let us do the hoping for you and the praying and see if you can pretend it hasn't happened.
It won't wholly work, but together with tears you might feel relieved.

I've not been able to read the whole thread, but my heart goes out to you and your beautiful little boy xx

Here is a story about a family's battle when they discovered their son had a neuroblastoma - he is completely well now. Just wanted to offer a ray of hope...

I have 4 members of my family currently suffering with cancer and so this is something close to my heart. I would really advise you to look at diet and exposure to chemicals in personal care and cleaning products. Also Metabolic therapy (a ketogenic diet) has been shown to have a high level of success, as well as adequate exercise and maintaining a positive attitude. One of my family members was diagnosed last year with stage 4 Hodgkins non-lymphoma and today she is cancer free. There is hope.

Here are a couple of links:

Natural way to starve cancer

Cancer active

Big hugs to you all x

Virtual hand hold, wish I could do more. X

Be bloody pissed off, scream and swear. It is utterly shit. We are here to listen. Any of us would do exactly the same.

oh gosh what a rollercoaster. I can understand a little why the faint hope is so unsettling. I will pray for you that your glimmer of hope comes true, and we are all here to hand hold whatever.

the face painting sounds fun! I think it is so lovely of you to allow his friends to come round, even though I can only imagine the chaos they can cause! could you not ask their parents to help tidy a bit before they leave? In a situation like this I would be mortified to think I was adding to your stress, I certainly wouldn't mind being asked

Trazzle, my neuroblastoma experience is 50/50 - I know one child who survived and is now a thriving 13 yo.

The other child, I know you have been sent links to the amazing blog his father wrote - and continues to write.

I wouldn't dare suggest anything to you in the way of treatment but I know the Neuroblastoma Society - of which my friend is a trustee - has a complete overview of the best practice and current research drugs in the UK should you wish to investigate this and other options.

Sending love and thoughts to you and your family

runningforme with the greatest respect, it is quite clear that you haven't read the thread.

I hope (and assume) that your comments come from a place of wanting to help and be supportive. I have numerous friends who also give me suggestions about what is best for Joseph and what we should be doing as regards his diet etc etc. I find suggestions like that offensive.

Childhood cancer and adult cancer are completely different. My son's cancer is caused by a faulty gene. It is not caused by me not letting him run around enough, or him not having a positive outlook on life. Incidentally, have you ever tried to stop a 3 year old from exercising? It doesn't really happen. And I take offence at the suggestion that he doesn't have a positive frame of mind. He is 3. He does not know any negativity.

I am very happy for that family not needing to "poison" their son with chemotherapy. Believe me, completely destroying Joseph's bone marrow was not a decision we took lightly. Leaving him infertile, potentially with hearing problems or learning difficulties was not a decision we took lightly. Had he not had chemotherapy, there would have been no point in ANY treatment at all. He had cancer on his spine in his skull and arms and legs. It was not far off starting to eat in to his eyeballs when he was diagnosed. We had no choice.

It appears he has now relapsed, despite our best efforts at treating him. He has less than a 5% chance of long-term survival. If eating organic vegetables was going to make a profound difference, I would expect his team would have told us. Instead they have encouraged us to get him to eat anything at all - sausage rolls and ice creams if that's what it takes. And if that keeps him happy for the rest of his life, well, actually THAT is what is important to me.

Oh you poor thing. This is all so unfair and you just look after you and yours. You have taken such brave decisions in impossible situations thankfully beyond most people's comprehension. You are a credit to your little ones and don't waste your energies on such stuff - save it for those that matter( your family).
Much love and kind wishes.

Trazzle, I wish I had you on my shoulder when people try to tell me I caused my children's Autism by letting them breathe near new carpets or that I could cure it by removing casein from their diets.

Trazzle, you've made all the right decisions.

Trazzle

Hugs Trazzle. Oh my word, what a week for you.

The Buffy household has all their gingers firmly crossed and we're clinging onto the hope that the cancer might go away / shrink of it's own accord. Be gone! I can't imagine the whirlwind of emotions you're going through having been given that ray of hope.

Are you able to put your foot down with your friends and arrange to meet elsewhere? I know they mean well and think it's easier for you for them to come to yours. You don't need the stress of feeling you need to tidy before and then clear up mess after.

Norks - brilliant idea to rally us all to give blood. They've stopped holding clinics at my work, we have to go to them but it isn't feasible on our lunch hr so I'll have to attend a weekend clinic. The next Sat I have home I'll book myself in.

Bucket loads of love and big splodges x

Sometimes I really wish there was a 'like' button on here. Trazzle, your last post was so eloquent and dignified.

Joe is so, so positive! Such a ray of sunshine.

trazzletoes The positive outlook comment was in reference to yourself. I meant it in the sense of you trying to remain positive.

Of course my comments were meant to offer support and hope - I told you I have 4 relatives suffering with cancer - 3 of whom have been given little to no hope. I don't see why my offering another perspective would be taken so offensively. I apologise for not reading the whole thread, but I missed the other one and 19 pages of this one is too much with 3 of my own children. I am not judging the decisions you have made - we all walk our own path. I was merely trying to offer some of the things we as a family have been trying in our own situation.

I will bow out. But I wish you both the best

Oh Trazzle, never before have I wanted to applaud someone on Mumsnet. Right now I am giving you, your family and Joe a standing ovation for every decision you've made and every battle you've fought. You're a mighty fine lass.

And what Buffy said .... that was very eloquent

Hugs min and fingers crossed for you and DS.

Sending hugs and hope to you all. Am hoping and wishing that the cancer goes. You must be all over the place with your emotions and dealing with day to day life.

Although not comparable to what Joe is going through at all, we were in a situation with DS where something potentially horrible was found and then a few months later it had gone by itself. But what happened to DS was very different to Joe's condition and DS did not go through any of the treatment that Joe has had. I don't want to give you false hope, but at the same time wanted to say that there is still hope and things that are very unlikely to happen can sometimes happen. I hope this doesn't sound trite and I'm not trying to make light of what is happening to Joe and the situation you are in. You are doing the very best you can to help Joe.

runningforme I have a child with a high risk aggressive brain tumour and I too find your posts offensive. If my child's cancer can be blamed on diet and cleaning products then my other son should have it and so should I. How I should love my child's cancer to be cured by organic fruit and vegetables ( he's always had these by the way) instead of putting him through 18 months of surgery, chemo and radiotherapy. If my child had not had these treatments he would not be here today and would have no chance - of that I am sure.

I have spoken at length to my child's surgeon, consultants, Drs, nurses, physios, OT's, speech therapists, dieticians about his treatment on every level and at every stage. I have discussed every option, fad diet, alternative tratment going. If cancer could be cured by diet alone we would all be laughing.

I'd like to say more but am exhausted after looking after my child and I cannot coherently express myself. Suffice to say childhood cancer is horrific on so many different levels and is caused by genetic fault. our children have not lived on earth long enough for us to have damaged them by poor diet and poor choice of cleaning products.

Trazzle you know those diet stories are simply a way of trying to take control with a disease that has no 'control'. Don't give it brain space. I can't quite believe that someone has poured out their pent up emotion onto your thread. But they have. Ignore it and move on. Diets won't do anything for anyone, regardless of their cancer.

I only came on here - as another person going through the hell of watching people you love ravaged by such an horrific disease- to offer support. maybe not in the way you can accept, but it was heartfelt and genuine. I didn't judge anyone's decisions nor say that anyone was 'to blame'. I merely suggested an approach we are trying in conjunction with traditional therapies such as chemo and radiation. I don't quite understand why this is so offensive or why I'm suddenly fair game because my approach has been different. I'm hurting too and my family, just like yours, is doing the best we know how. I naively thought that sharing some of what we are looking into might have offered another approach when all else is failing. I'm going to hide this thread now, but again, I sincerely hope for the best for you all.

Sorry that you have so many people going through it in your family too, runningforme - that must be hard.

And minmooch - praying for your DS too - such a stressful, distressing thing to go through. My niece had a brain tumour aged 21mo, luckily for her/us it was removed by surgery before it had done too much damage but it was a hellish time.

Trazzle, I am not really ever a very huggy person, even in real life, but I do wiah that I could give you a real hug. As always splodging hard xx

Wish!