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Following the initial diagnosis, eleven hours of emergency surgery took a hard toll on Luna and left her very weak on her left side and unable to swallow (she was fed through a tube after that). Conventional therapy was very hard on Luna, but in December 2008, the tumor had shrunk enough that the doctor could attempt surgery, and they went through a course of dangerous surgeries over the next few months, which Luna tolerated fairly well, according to her parents’ website. But the tumor kept growing, and this made them desperate.
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They met with Anthony Michalski, their consultant in pediatric oncology at the Great Ormand Street Hospital. This interaction and the collaboration of the pediatric oncology department at GOSH was partially documented in the BBC 2 film, A Tough Line. When they review scans following her string of surgeries, the entire team–an entire room of specialists–agrees that the tumor, which is now compressing her brainstem is recurring and that the current treatment is not working. Michalski wants Luna to go on etopocide to prolong her life; a cure, while possible, would likely not be the ultimate outcome. They agree to go on the meds, but when no physician in the UK can offer them a cure, they find Burzynski on the Internet.
He tells them exactly what they want to hear. According to Luna’s website:There is no more treatment that can be done in the UK. We went home and cried for several days then we looked at Luna and thought hang on she’s not crying we cannot give up she has fought so long and hard and not a day passes that through all of this she hasn’t smiled. So we searched and searched asked questions and somehow found contact with another family who’s daughter had exactly the same disease and discovered there was something out there.
A treatment call Antineoplaston therapy which has had amazing results in the US. We have to try this.
The cost to meet the Doctor for assessment is £20,000
If Luna is accepted the treatment then costs £50,000 a year. -
In late May, and early June, Luna’s story was in the media, in The Sun, in the Watford Observer, and the Sunday Express as the family was actively raising money for Burzynski:
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Luna PetagineWhen cancer survivor Carmela Cook read about Luna Petagine’s fight for life in the Watford Observer last week, she said she was moved to …0
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At the end of July, 2011, the family arrived in the United States searching for a cure. By the end of August, back in the UK, they knew that they would be in Houston by September 12.
The traditional treatment seems to be having an effect, keeping the disease from growing. It is an “effective agent,” perhaps the best possible outcome at this point. Nonetheless, the family presses ahead fundraising for Burzynski. They raised £100,000 for Burzynski in a mere 8 weeks.
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They report to their consultant in the UK after their trip that Burzynski told them that he has 30% of patients have a good reaction, using the clinically substandard metric of “stable disease” a substitute for “success” that no other researchers find acceptable (especially when he has mentioned there might be a cure!). According to a site review at Burzynski’s clinic:
“Moving from protocols to results, I am surprised by Dr. Burzynski’s statement that stable disease is a positive outcome. That runs contrary to established criteria for trial design. In the context of phase II trials, which are short-term studies, stable disease is not reported as a positive outcome.” -
After this consult in the UK, Luna’s doctor remarks,
“But what you hear quite a lot is, ‘how do you know that he or she is going to be ‘the one [who has a successful ‘miracle’ treatment]? … And the phrase that makes my heart sink is ‘We’d never forgive ourselves if…’. Actually, it’s not about them forgiving themselves. It’s about them doing the best for their child. And the focus should be what’s happening for the individual child rather than parental emotions. It’s tough because it’s so understandable […] that you are going to do everything in your power to hunt down the last chance of cure, but where that becomes a futile exercise is a difficult call, a difficult line. ”
This is the point that an ethical, concerned doctor takes away from a professional lifetime of caring for children, something that Burznyski seems to have never considered. (It apparently doesn’t fit his business model.) -
Here is a photo of a physician watching parents walk away from a treatment that is working as he’d hoped: http://pic.twitter.com/EQ1vEIQK -
On October 10, this photo was uploaded to facebook:
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Timeline Photos | Facebook0
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I have so many photos in front of this…tomb that it’s hard to imagine. They really are at death’s door.
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One week later, on October 17, the message goes out:
Little Luna is currently in hospital and not too well. Our thoughts are with all of you xxxxx -
So quickly does Luna’s condition deteriorate it’s difficult not to think about how quickly Rachel Mackey nosedived after starting ANP and how groggy she was.
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Once Luna was on the Burzynski treatment, her sodium level went insanely high. Her REAL physician’s reaction to this news, which was captured on film by the BBC, tells the whole story about what a horror antineoplastons are:
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Here’s a doctor hearing that Burzynski’s ANP treatment had put Luna in the emergency room with a sodium level of 178. http://pic.twitter.com/TjzNXKQ0 -
This is much the same deadly side effect that nearly put Adam McArthur into a coma. That Luna is in a sorry state is immediately apparent. She is chugging water incessantly throughout the clip and slobbering uncontrollably. No matter what a Burzynski supporter says, this is a toxic treatment.
(I should note that this disturbing film is really important to understand the horrible choices that parents are forced to make. I recommend it, lest you think anyone can take writing about these issues glibly. You can’t.) -
By February of this year, the ANP has proved to have been a resounding failure. Burzynski, just like with Adam McArthur, tries to get them on his ridiculous “gene-targeted” therapy; it’s basically a Chemo Colatta, apparently mixing drugs that have not been tested together, but don’t take my word for it:
Luna and her family have been talking to Doctors in the US at the Clinic, who have agreed it is unsafe to put her back on the Anteneoplaston Therapy because her tumour is so close to her brain stem. They have however suggested they put her on a treatment called Gene Targeted Therapy. This is where they take a sample of the tumour and in a lab test it’s genetics and test what drugs will work against it. Then then will give those drugs to Luna. The family are very excited because they knew the Anteneoplaston could eventually be too much for Luna, with possible fatal consequences and of course they are desperate to cure her. The Gene Targeted Therapy is having amazing results in adults so we pray it will do the same for Luna. We now need to continue to fund raise so the family can start the treatment and carry on with it. Any fund raising ideas please email us via the website. Thank you x
From this point on, it is uncertain to me what their relationship with Burzynski is. They seem to have continued fundraising but were working with doctors in Boston. -
In early March, Luna’s mother appeared in a strange article on the typically useless HuffPo, apparently convinced that breast implants had caused her daughter’s cancer:
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Mother Blames Burst PIP Implant For Daughter’s Brain Cancer
A mother has claimed that her burst Poly Implant Prothese (PIP) breast implant could have caused her young daughter’s incurable brain can…0
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The announcement goes out on the 25th of June:
It is with a heavy heart that we write this update. Despite battling against all the odds over the last 3 years it saddens us to tell you Luna is losing her battle. Lucy and the family took her back to GOSH on Friday after she appeared to be deteriorating in front of their eyes. A CT scan gave the devastating news that not only had the tumour grown but that it now appears inoperable and beyond treatment. The family have been told to take Luna home and cherish the time they have left with her. The picture here shows Luna, her siblings and cousins enjoying a family day for their Popsies birthday. The family continue to show unprecedented strength and dignity throughout and we have nothing but admiration for them – especially Luna x -
They carried their daughter very, very far. Her father ran a damned marathon for her. These parents did everything that their instincts told them to do.
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On August 8, 2012, the sad, sad news came that Luna had died:
On behalf of Lucy and Mario It is with great sadness that we share with you that our Beautiful Luna fell asleep very peacefully with mummy and papa holding her tight to become a shinning star, and we thank her for all the wonderful memories she leaves with us, and thank you from the bottom of our hearts for all your support and love you have shown us in everything that you have done.
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On the 16th, the family–and the whole community that sprang up around her—said farewell to their daughter.
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Crowds pay last respects to little Luna Petagine
Crowds pay last respects to little Luna Petagine 5:30pm Thursday 16th August 2012 in News By Amie Mulderrig, Senior Reporter The funeral …0
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Her family has continued to memorialize their daughter, and I do hope that they continue to press Parliament for more funds for brain cancer research.
To learn about legitimate clinical trials, please visit clinicaltrials.gov. To help children receive top-notch, free cancer care, please donate to St. Jude’s Children’s Hospital.
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