*An appeal to help get Congress to take action follows this story*
At the end of October 2011, Brynlin started having vomiting, headaches, and trouble walking. On the 16th of November, she was diagnosed with a diffuse intrinsic pontine glioma, an inoperable tumor on the brain stem that has killed several of the children who appear on this website. Following surgery to relieve pressure on her brain, on Nov 21st, the family reports on their Caring Bridge site:
Mike and I have had different family members tell us about this clinic. The same night, Brynlin’s nurse felt the need to wake us up in the middle of the night to tell us about this clinic. She said, “I probably shouldn’t be telling you this, but we have a med student here who was telling me about this clinic in Houston that he did a research paper on.” She gave us a copy of the website and it was the same place our family had told us about. Today we were able to fill out forms and send Bryn’s medical information. When we talked to the secretary this evening, they were reviewing her case and she said that they would talk to us in the morning.
The get an appointment at the Clinic on the 30th, but they are already raising money by the 23rd. They arrive in Houston on the 29th and have an appointment at 9:00 the next morning. By the end of the day, Brylin is on treatment and settling in for the weeks of training that they will have before they are set off on their own.
On December 12th, the Wichita Thunder donate a portion of a game’s proceeds to fund Burzynski. The local NBC affiliate misreports:
Refusing to let their daughter die without a fight, the [S family] just returned from Houston where they’re putting Brynlin through an experimental and expensive treatment. Instead of chemo, amino acids and proteins are pumped through her body six times a day.
“It’s supposed to help her get better without hurting her other cells like radiation and chemo would do,” said [her mother].
The first eight months of treatment will cost $96,000. Each additional month will force [Brynlin’s family] to spend another $7,600. It’s money they don’t have. And the community is rallying to help.
Burzynski gives chemotherapy. Lots of it. ANP? Chemo. He has found a sure-fire way to bleed stones–kids with cancer. The entire community chips in.
They are back home by December 16th.The family is essentially marking time between their return home and their first MRI in mid-January. On January 11th, she gets the MRI, and the next day she gets bad news from a bad doctor:
Written Jan 12, 2012 5:04pm
We just got a call back from Houston. Dr. Acelar said there was a 17% increase in her tumor. This is not uncommon for the first month. They ordered a PET Scan ASAP to see if any of it is scar tissue. She will also have another MRI in four to six weeks. It is not the news we were hoping to hear, but we knew it could get worse before it gets better. She is not acting any different than she did in Houston so that is good.
I don’t know, but setting up the family to stick with a treatment when it (predictably) fails to work seems unethical to me. It’s the old “getting worse might mean getting better” gambit that we see in so many of the other stories. From the PET scan we learn that there is no scar tissue. The tumor is simply growing.
Two days later, Brynlin is not doing so well:
She is sleeping a lot and complained of a headache a couple of times and threw up once. We took her to Great Bend Regional for a CT last night and it showed that her shunt is working properly and there is no bleeding so that was good. Today her Dr from Houston told us her symptoms may still be from sedation and being off her pump then being put back on.
Or it could be from the tumor that’s grown 17% since she started treatment, doc.
On the 24th they visit their doctor for a monthly check up, and it’s clear that the tumor is growing and the poor little girl is having increased symptoms: tremors, glassy eyes and problems focusing them. They talk to Acelar again:
She said sometimes patients will show this in the first month and then show reduction the second month, but she cannot make any promises. She is concerned because Bryn is beginning to show other new symptoms. We are going to continue her treatment for four weeks since her last MRI and then she will have another MRI to see if there is any change.
If you’re not angry that they keep feeding this family this line, there’s something wrong. On February 10th, we hear that MRI showed the tumor continued to grow. She has almost nothing but bad days now.
The local community raised some $50,000 for Burznyski, whose treatment did nothing for the patient. There’s nothing but decline here. It’s heartbreaking and my sympathy goes out to the family.
Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, if you like, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to thehoustoncancerquack.com and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong so we can fix it and so this never happens again. Find out about real clinical trials by visiting clinicaltrials.gov.