As much as I try, even when I’m on vacation in an undisclosed warm location near a beach (actually, our hotel room has a balcony overlooking the ocean), occasionally news finds its way to me. Part of it is because I still get the odd e-mail or two, and I do check my e-mail every so often on vacation in case something is exploding. In any case, an update to a story I wrote about last month has found its way to my in box, and, even on vacation, I can’t resist a brief update.
Right before Thanksgiving, when it was announced that Stanislaw Burzynski got off on a technicality, I discussed as part of that post yet another patient whose parents had been lured by the promise of a cure for the incurable. I’m referring to Amelia Saunders, an unfortunate little girl who had been diagnosed with an inoperable brainstem astrocytoma. Unfortunately, such cancers force us in the cancer field to face our limitations starkly. There was really nothing that could be offered Amelia other than palliative care. As is not infrequently the case, Amelia’s parents discovered Stanislaw Burzynski and his antineoplaston therapy. As I (and many others) have pointed out, there is no convincing scientific evidence that antineoplastons are an effective treatment for advanced cancers, much less that they provide more hope for a girl like Amelia than conventional therapy. Indeed, Burzynski’s ignorance of cancer biology and therapy is appalling, but he pontificates glibly with the arrogance of ignorance about how real cancer researchers and physicians just can’t match his genius regarding personalized medicine.
In any case, Amelia’s parents did the same thing all too many parents of children with incurable brain tumors have done and put their trust in Stanislaw Burzynski to the point of raising hundreds of thousands of pounds to take Amelia from her home in the U.K. to the Burzynski Clinic in Houston. For several months, Amelia did not seem to be deteriorating (at least not much), and the Saunders thought that their hundreds of thousands of pounds were being well-spent. What prompted me to mention them was that they had received an interpretation of an MRI from Burzynski in which the tumor appeared to be forming cysts, and apparently Burzynski had told them (at least, that’s the implication I got from their Facebook post) that this meant that the tumor was dying. As I pointed out, what it probably meant was that the tumor was outgrowing its blood supply, as tumors are wont to do, and the center of the tumor was undergoing necrosis. This is a very common finding in aggressive tumors of many varieties, and unfortunately means little or nothing with respect to prognosis.
Later, Amelia’s father lashed out at critics of Burzynski. As much as I could understand his pain, however, I can’t help but note that it was not I who made his choices and Amelia’s struggle public. As little as I wanted to upset either Mr. Saunders or his family, I was also worried about other children whose parents might be drawn by Burzynski’s siren song to use up their life’s savings chasing after a treatment with no firm evidence of efficacy and taking part in clinical trials that, unethically in my opinion, require the patients to pay huge sums of money to participate.
Earlier this week, the Saunders family posted this message on Facebook:
We had our meeting at Great Ormond Street yesterday and, sadly, they just don’t have anything for us. We kind of knew this before we went – but wondered if they might have a trial that we could take part in. Unfortunately they don’t.
They felt that Amelia is in the latter stages of the disease, and that what is called ‘progression’ has already started. This means her tumour is growing, the cancer is spreading and we don’t have a huge amount of time left. Again we had already guessed this was happening but it was good in a way to have another opinion of this.
The other thing to mention is that I know I posted on here a few weeks back that Amelia had cysts forming in her tumour. Sadly it just appears this theory was wrong, and thank God we didn’t get our hopes up too much about this. Chantal and I have been accustomed to trying to make sure we get lots of opinions about things, and ultimately Amelia’s decline clinically is the telling factor. Her right hand side is now pretty well locked in position and her speech is going. Other functions like swallowing are also beginning to fail.
We do still have the option of radiotherapy. Chantal and I will be talking about this over the coming days but it would be hard on Amelia and only a short term fix. We have to consider if this is the right thing to do or not.
I guess this is one of the updates I’d hoped I’d never have to write. Every day we have felt the love and prayers of so many thousands of people, and we have fought tirelessly every single day to make that miracle happen. Last week we took Amelia off her antineoplaston treatment and we won’t be resuming it.
We are now faced with an uncertain future. No parent should have to say goodbye to their child. No parent should have to watch their child deteriorate as we do. Our beautiful little girl is being eaten alive and her body is failing her. I will probably never understand why we deserved this cruelty.
There really is nothing more to say. No child deserves this cruelty. No parent deserves this cruelty. Yet, this cruelty is inflicted upon some parents and children.
No doubt the Burzynski trolls will view my posting about this as somehow gloating. Nothing could be farther from the truth. This is one situation where I really would rather have been wrong and would have liked to have heard an update that the formation of cysts in the tumor really did presage its shrinkage and eventual cure. Unfortunately, I know a lot about tumor biology and clinical behavior, which is how I knew the true significance of this news. It would be a good thing indeed if Burzynski really did have the goods, if his therapies really could save children like Amelia, but they can’t. Truth be told, neither could conventional medicine, but the difference between conventional science-based medicine and Burzynski medicine is that SBM tries very hard to be realistic, not to give false hope, and, most importantly, to weigh the risks and benefits of treatment. SBM does not tell parents that their child’s tumor is shrinking away when in fact it is not. I know how difficult it is to accept when the victim is a child, but there really are painful and unfortunate times when palliative care is the best answer.
So once again we are left with an all too familiar story. There is a dying child whom conventional medicine can’t save. The parents, desperate as any parents to save the life of their child, want to believe that Burzynski can save her when he cannot. They are willing to do anything, even raise hundreds of thousands of pounds to travel thousands of miles from their home and subject their daughter to toxic, unproven therapy. (Yes, antineoplaston therapy is toxic.) Nor are the Saunders any more gullible than average; no one knows how he will react to the cruelty of having his child develop a fatal brain tumor until it actually happens. That’s why it is Burzynski, not the Saunders, who deserves scorn. The Saunders deserve our compassion as they face what is one of the most horrible experiences any human can be forced to deal with: The impending death of their child.