Mother doesn't want her son to have radiotherapy after having brain tumour removed.

[OscarPistoriusBitontheside]

Can't make the link work but it's on sky news.

Long story short a mother wants to deny her son radiotherapy treatment after his having ha a brain tumour removed because she is worried it will affect his long term health. Doctors have said he had a better chance of survival if he has it. Then estranged (according to the press) father agrees with the doctor.

Personally I think she's crazy. I know two small children who died of brain tumours in the last year and I can only imagine their parents would have given anything to even have had the chance of a discussion about radiotherapy with their doctors.

Glittery - I am so very very pleased it all worked for your DS and he's gone on to live a very good life so far - with lots more to come :) However, this is not always the case and to suggest others don't know what they are talking about is cruel and unfair.

Expat x

We don't have crystal balls. We try to weigh up what will be better for our children and whatever life they have left. Hey, if I'd have had a crystal ball, I'd never have gone for that fucking transplant that made the last 60 days of her life a sheer hell for her and all of us.

And to the mother of the boy who died of a brain tumour at the same age less than two days after A from the same unit, she wishes she'd never have gone for the radiotherapy, either, just gone home and enjoyed the time he had left, because his end would have been far more pleasant.

Moot point I guess when your kid isn't one of the success stories. No one likes to hear about those. Just bury them, cremate them, and stick to bereavement areas or be shot down as someone who doesn't have a clue what paediatric cancer is like.

xx

And children in the UK need more options than are available here! We have met so many stuck raising hundreds of thousands of pounds for treatments abroad - not quack treatments, treatments are Children's Hospital of Philadelphia such as proton therapy (which can be given to some children who are too young for radiotherapy, again, depending on the tumour, and antibody treatment in Germany, with much better rates of survival - or battling with boards for funding.

A good friend of mine has just been through the process. Her daughter is 3 and has Stage 3 anaplastic ependymoma. She was rejected twice before finally winning appeal for funding of proton therapy for her daughter.

I'm absolutely not being hostile, how could one parent of a child with cancer be hostile to another? We only want the best for our DC and based on medical opinion that is what we do. I apologise completely if that is how my post came across, that was absolutely not my intention.

I have just read some fairly inaccurate stuff about the effects of radiotherapy on here and can understand why some parents would be terrified if that was their understanding of the long term effects. My only aim in posting was to say that it really isn't always like that. The doctors only give the worst case scenarios and very, very few children ever suffer them. Yes one is one DC too many but it was a risk we felt we had to take for DC's long term survival.

My apologies if I have offended anyone.

Very poignant points well made, expat.

I am truly sorry if I did Mrs DeVere. My apologies.

The child is too little to give consent so it should surely be up to his parents to either give consent on his behalf or refuse it IMO.
It's my understanding that the NHS trust are the ones who've brought this case to court. The medics involved must be either very sure that radiotherapy is in this boy's best interests as far as they can tell or very unhappy that their advice isn't being taken. (I had chemo, surgery and radiotherapy last year and only afterwards did it occur to me that there were no choices offered. All the medics assumed I'd undergo the treatment plan. At one stage the duty consultant wouldn't let me go home from hospital when my immune system was very low - even when I pointed out that I was in a ward with infectious patients, had little access to food that I could eat due to my multiple food allergies and was being looked after by a nurse who had a runny nose. He explained that "he couldn't take the risk of discharging me."
What do they mean by the operation being successful? Curative? Or without complications? If it's the former and this little boy is having chemo, why are they desperate to give him radiotherapy?
What an awful situation for this mother and anyone else in her situation.

I thank you and I am truly sorry for the loss of your beautiful DD. I cannot begin to imagine your sense of loss and pain. Cancer is an utter bastard. A thieving bastard, stealing loved ones away from us.

And sometimes, it steals our children away after they have endured every single horrendous treatment going. Sometimes, there's no 'miracle' (they don't exist, IMO) and no cure or extremely small chance of success or cure v. truly horrendous and potentially fatal side effects. That needs to be acknowledged when deciding or determining on a course of treatment for any child too young to decide for him or herself.

My child died cancer-free. Her treatment killed her.

People have become so programmed to view cancer as a 'battle' or fight that's to be 'lost' or 'won' that it's sometimes in situations like this, for those on the outside and not involved in the particular case, to forget that it's a disease, with treatments that can kill the patient and sometimes with very, very little chance of success or cure. And it's vital that people - medics, scientists, healthcare professionals, academics and patients and parents themselves - question these treatments constantly for progress to be made!

Why is there no protocol for relapsed neuroblastoma in the UK? Why is there no proton therapy centres? Why has so fucking little progress been made in the past 35 years towards the treatment of the most common form of leukaemia to strike adults and 20% of all paediatric leukaemias? Why are still so many dying of brain tumour?

We need to move past radiotherapy, and this is already being done. Hopefully, one day, the same will be true of chemotherapy.

Because all too often, these treatments are not magic bullets. They are last ditch attempts that will hopefully one day be akin to leeching.

The medics don't have all the answers. Many parents and patients decide to leave decisions about treatment to the medics but parents who don't agree with the medical advice are surely entitled to have their wishes respected, particularly when they are undergoing enormous stress already. There's often no black and white right or wrong choice in this complex situation.
I'm very sorry for your dreadful loss too, expat and MrsDeVere.
I hope the treatments for cancer improve.

Sorry expat, cross posts - my slow typing.
I so agree - chemo and radiotherapy only work because they destroy cells, including healthy tissue.

'Many parents and patients decide to leave decisions about treatment to the medics but parents who don't agree with the medical advice are surely entitled to have their wishes respected, particularly when they are undergoing enormous stress already.'

This friend of mine, well, it's pretty public who she is. I met her when she came onto A's unit last January. Her child's former consultant, without too much detail, is at the least, a git. If she hadn't been as gifted a researcher as she is, and so determined and relentless, her child, well beyond balance of probabilities, would be dead.

No case that gets this far is simple or black and white. Our own was more so but that's because a) we were blessed with one of the most amazing consultants known to leukaemia, a brilliant woman who works tirelessly with other medics worldwide to devise better and provide the best treatments for paediatric leukaemia possible b) very, very little progress has been made in decades for the form of leukaemia our daughter had.

Does that make our loss easier to bear? I can tell you only from the experiences of others, yes.

KEEP questioning! KEEP researching! KEEP lobbying and fundraising for more research into paediatric cancer. KEEP being open and pushy about paediatric cancer awareness!

If you don't feel comfortable with the protocol prescribed for your child, then DON'T take it lying down!

Radiotherapy isn't an ineffective treatment though. For some tumours it's a highly useful treatment and research is ongoing to establish when and how it should be used. My mil worked on a research programme a few years ago looking at the use of radiotherapy in breast cancer patients for example.

It may not be right for this child but it's not a pointless brutality per se. I hope that both parents and doctors can come to an agreement because they all have to live with this choice. It's a very, very hard world where you have to face this sort of thing - as a parent or as a professional.

Expat, which would you say are the best charities pursuing research into paediatric cancer, as far as you know, please?

It certainly does have a place, Northern, and it may have in this case and the judge has left a decision for two days so that all sides can speak and hopefully reach an agreement before he must rule on it.

Screaming, IMO, and it's just my opinion, Neuroblastoma Alliance is an excellent paediatric charity. The Brain Tumour Charity, Leukaemia and Lymphoma Research and The Aila Coull Foundation, which has just been set up as charity status, so see their page on FB, is exclusively dedicated to research into paediatric AML (Aila was a 16-month-old baby in Aillidh's unit whose mutations would have required bone marrow transplant, but she was unable to be remitted with the chemo available and died), are good ones.

Cancer Research UK dedicates very little of its takings into research of specifically paediatric cancers, or cancers which largely target children and teens, such as Ewing's sarcoma, osteosarcoma, retinoblastoma and neuroblastoma, although apparently it has been able to grant funding into a new drug that will hopefully pass trials to treat AML (AML is the most common form of leukaemia in adults) (the past two drugs designed failed in the last stage of trial). Many afflicted with AML, however, die from the chemo protocol, as it is one of the harshest, and those whose mutations require stem cell/bone marrow transplant present with rather shocking overall (OS) survival rates), particularly as many diagnosed are 'elderly', over 55.

Worldwide AML chemo protocol, including for children, involves 3-4 rounds of 7-10 days of treatment of 3-4 chemotherapy drugs delivered via Hickman/central line in a strict hospital setting. No oral, no day unit, no going home. The treatment causes rapid depletion of all immune system excepting lymphocyte (AML is a cancer of the granulocytes), so the patient is usually, from about the 4th-5th day of treatment, confined to strict isolation.

The goal is to annihilate pretty much all of the immune system, as theirs is a cancer of it.

The drug GCS-F is normally not used unless the patient has failed protocol and needs to have his/her blood cell counts induced to rise to be knocked out with more chemo. Instead, it is strict iso and blood and platelet transfusions until blood cell counts rise enough for the next round of chemo to begin.

Those who are 'lucky', and do not present with mutations requiring stem cell/bone marrow transplant or do not die from infection following chemo usually remain in hospital entirely from 6-8 months.

Those who are not so fortunate face a 5th and further round of chemo IF they remit, a conditioning round to allow them to take stem cell/bone marrow transplant. Since many forms of AML requiring stem cell/bone marrow transplant have a very high (50-85%) risk of relapse, protocol is that attempt to transplant must take place following clear cytogenetics of bone marrow aspirate within 12 weeks of the last course of chemo. If possible, a harvest of the patient's own bone marrow is taken as backup and to donate to medical research upon their death should the parent or patient consent (we did. Our daughter had an absolutely cracking harvest, cancer free, of 500mL of fluid).

This 5th round is 7 days long. Consensus at a conference in Geneva of clinical study was that chemo drug treatment was on par with chemo + total body irradiation/radiotherapy, and A's own consultant recognised that radiotherapy can come with as many if not more problems as chemo itself.

It consists of 4 drugs given via central line and completely eradicates the immune system, including lymphocytes.

If the patient develops infection before the graft takes, a not insignificant likelihoood, the chance of death grows.

Aillidh fell into this. She had a very common infection known as human metapneumo virus that migrated from her throat into her lungs. She also had a bacterial infection call psuedomonas that migrated from her gut into her lungs, probably through vomitting. These two infections inhibited engraftment. She then developed graft v. host disease, the only treatment for which is steroids, which worsened everythign in her lungs. And as she had no immune system she didn't respond well to antibiotics and the antivirals available suppress bone marrow function.

The upshot is that by the time her body was able to be on the road to defeating these infections and engrafted, her lungs were so damaged that she died.

This has to stop.

Same way treatment for brain tumours has to get better.

Has to.

Yes, radiotherapy has a place, and it may do in this case and hopefully an agreement can be reached.

But people, there has to be a better way, for all these children.

I don't know what type of brain cancer little Neon has. But there are some of them for which precious little can be done and not without grave consequence.

This isn't some hippy nutter. This is a mother with serious questions about her son's health and treatment.

I can't judge her. We only did what we did hoping Aillidh would be in that 19% of paediatric AMLs with FLT3 mutation who live. She wasn't.

I don't stand to judge a parent in a similar spot.

'My mil worked on a research programme a few years ago looking at the use of radiotherapy in breast cancer patients for example.

It may not be right for this child but it's not a pointless brutality per se.'

Again, it's not without place, but directed it at tumour in the breast of an adult or elsewhere in the body of even a child can be very different from directing it at a paediatric brain.

There was a little girl in A's unit, about 9 months older, who had Ewing's sarcoma in her left arm at the shoulder. Her tumour was such that it developed tentacles around the arteries supplying her arm and it had to be amputed with so much of the shoulder joint that she cannot have a prosthetic fitted.

She underwent 10 weeks of radiotherapy which has left her with many side effects, from infertility to chronic pain. If she relapses, there is no protocol. She will die.

But it wasn't to her brain, and I've seen children who haven't been as fortunate as Glitterys son, and still died, so again, I don't stand to judge her.

Yes I absolutely agree. I just wouldn't want anybody to read this thread perhaps referred for radiotherapy themselves or knowing somebody who was, and thereby feeling perhaps unduly pessimistic about it's chances. I think that it is surely significant that radiotherapy was recommended for this lad at all. The nature of the arguments from the Hospital Trust seemed to indicate to me that there was some evidence to suggest the benefit outweighed the risk?

My bil had palliative chemo and radiotherapy. In his case I think the radiotherapy did perhaps alleviate his symptoms a little. The chemo did bugger all. But he was an adult, completely different kind of medicine to treating children. Just as futile though. He had lung cancer. He got 5 months. Exactly the average survival for his diagnosis.

That's it, though, really, Northern, this is a child. A little child. A little boy.