Maggie M., Georgia’s mother, is in medicine (I believe an anesthesia technician), and so when she heard the news she instantly knew exactly what a hard tumor one in the pons was to treat. She started a Caring Bridge account, a truly phenomenal resource for families with diagnoses of cancer (basically a ready-made community of people who understand because they’ve been there). Georgia had 6 weeks of radiation, which ended on 4 September. (Unless otherwise indicated, all quotations come from that account.)
According to the West Australian (Perth) on 4 Oct 2008, Georgia received experimental treatment to make her tumor more responsive to radiation at Princess Margaret Hospital. The projected costs for going to the Burzynski Clinic were $70,000 to $100,000 and the local community stepped up to the tune of $51,000, the paper reported. Maggie lays her hopes and intent out for the paper: “We’re now looking at this treatment overseas, where some people are alive after two or three years, and we know even then there are no guarantees, but we just have to try. There are still lots of people raising money and they’ve been fantastic, but if we have to sell the house then we have to sell it, simple as that.” Indeed, on the 11th, we learn from the same paper that the community responded with overwhelming financial support, keeping the family’s house from having to go up for sale. On 3 Nov, the donation had swollen to in the paper has swollen to “$115,000 […] enough to cover a substantial portion of the $US107,000 ($161,788) treatment.”
By the time the online journal on the October 12th is started, the family seems to already be looking into the Burzynski Clinic. It’s going to be an enormous undertaking, because the family is from Leeming, Australia. School will have to be postponed for the kids since they are taking the trip, we hear on the 14th.
By October 25, the radiation has more than halved the size of the tumor. On Nov. 2nd, the family left for the States, and on the way to Texas had a stopover at Disneyland, where Georgia had a great time: “We were told not to let her go on some of the rides. But what the hell. She is having the time of her life.” Heck, yeah.
On November 14th Georgia gets great news on a PET scan, that the tumor has shrunk a remarkable amount:
We start treatment on Monday.We know its 24hrs a day 7days a week.It will be minimum of ten months.If it means tumour stagnation or dissapearance its worth it.We will manage our lifes accordingly and Georgia is great she will just get on with it.She will have a small infuson pump we need to sort out a way she can still run in theathletics programme
On Nov. 17, Georgia starts ANP treatment, and she seems to be her active little self. On the 20th, however, we get an update about her progress:
Georgia not fantastic. Has a mouth infection and is finding it hard to eat anything.Weve got some medication for it. Her bloods were all over the place today and needed some supplimentary medication for that too. The gene therapy makes her go to the toilet lots which has an effect on her electrolytes.She has full bloodwork done every other day. She is sleeping this afternoon which I am glad about I hate to see her sick. Its not often she snuggles up on my knee and sleeps.She is usually everywhere.At the clinic she was riding around on a chair with wheels so they were sad to see her like she was today.One of the nurses did say she would get tired around the end of the first week into the second. Speaking with one of the boys on the same treatment today he said its very tiring.
The family is back in Australia by the 7th of December, and mom is sold on the ANP treatment:
Georgia is doing really well. We had a bad weekend a few weeks ago and during the evening on the Monday we think Georgia may have had a small fit. She was very restless, agitated confused and was hallucinating.When you are in a different country, drive on the wrong side of the road, freeways with 6-9 lanes of traffic, and you have a sick child its very frightening.We got through that night with no sleep and Georgia is fantastic now. I would say she looks the best she has been for ages.Her enthusiasm and energy is back.Her food intake has increased probably due to the small dose steroids she is on at present.
When we went to the clinic we had mixed thoughts. We didn’t even know if were going to have treatment as we wanted to check out the whole works. Well on from that the clinic and staff are fantastic. The treatment does seem appropriate for Brain Tumours. There are people living a hell of a lot longer than 12 months who have had treatment. For the sceptics out there we will show you how wrong you are. Conventional treatment only offers you a rough guess at life expectancy of 12 month thats with radiation. The treatment is in stage 2 trials and the unit has applied for stage three.It has F.D.A approval. Anyone out there looking for a different aspect to treatment try the antineoplaston gene therapy. Guaranteed not to make you ill and loose your hair.Its worth a look.
Yes. Skeptics want to be wrong. Absolutely. We want these children cured more than anything.
So Georgia at this point has had radiation and steroids, both conventional treatments. I’m wondering why we should attribute any improvement at all at this point to the ANP?
Between that update and Christmas, Georgia is dancing and exercising vigorously with her classmates (though she is worried Santa won’t come because she has to get up so often at night to go to the bathroom due to the ANP, an adorable thing to be worried about). Nonetheless, they are having a hard time keeping Georgia’s blood counts in a healthy range:
This will be the last up date for a few days. We are totally demoralised today. We have busted our guts making sure evrything is the best it can be for Georgias health. We have re vamped our diet toatlly. Taken all the suppliments based on blood and hair anaylsis, we dont mess about. Our regime is as tight as anything. Yes we have had a remarkable result thanks to god for that.Today I had blood tests faxed to me and it showed a number of issues with Georgia’s red and white cell counts.We are hoping its from radiation and the motoxafen gadolinium she had for those 6wks. I was hoping her blood would look betterby now. (Dec 23)
They got a new MRI on the 7th of January and on the 14th they got good news, that it was shrinking. I don’t know who delivered the news to them. The next day, Maggie beams about Burzynski:
We know the potential of this tumour and by no means are we naive to what its capabilities are. But for now our results are better than expected and for once we are going to enjoy this result. We are now hopeful Aprils scan will bring forth the miracle. We hope this will inspire people in the same situation as we are to look at Dr Burzynskis work. It doesnt work for everyone neither does conventional treatment. We know of children who have had cures from radiation alone, we didnt. But we chose to try and finish it off while it was suffering. We are still nervous about the next few months but we know we have had a result from the antineoplastins, and may it continue.It has moved to a phase III trial so people may be able to get funding from medicare/health funds for antineoplastins.
A few points. We still don’t know that it’s the the ANP, the diet changes, the exercise, the radiation, the steroids, or something like spontaneous healing (which sometimes, albeit rarely, happens). They attribute it to Burzynski. That’s fine but they honestly don’t know which, if any, of the treatments worked. That phase III trial Maggie mentions, by the way, is STILL NOT RECRUITING.
On Jan 21st, we hear that her mother accidentally gave Georgia an enormous dose of ANP, though Georgia only seems to have had some drowsiness:
I managed to set the pump wrong and a 24hr dose went through in five hours!!! I am still devastated and find myself continually checking the thingAt first I thought the kids had managed to change it, then I thought it was a fault, but it was human error!! I spoke with the Drs in USA and here and she just slept it off. She was very confused when she was awake but within 5hrs she was her normal self. Th Drs said that the worst thing that could happen would be nausea, headaches and very sleepy. It made us brush up on our emergency routine, and our phone number list.All is well.
Nonetheless, things are progressing, as we hear on the 24th:
We feel we have done the right thing going to Texas to the Burzynski clinic. You have to have peace with your mind and do what you feel is right, and know you have done what you feel is right. We have peace of mind at the moment which is good for our family. You never give up hope on anything too.If you loose hope that must be terrible.
Well, that’s one thing the can guarantee you at the Burzynski Clinic, a feeling of hope. And that’s about it. The next report comes on Jan 31:
Georgia has not been too good. She has got very tired. Not wanting to do anything.Not like her at all. Her blood results have been all over the place and we have struggled to stay on top of them.At one point we had to stop treatment her sodium was so high.
The Drs ? line infection thouh she has no temp. Or it could be tumour toxins which are given off as the dead tissue begins to die off. Obviously we are hoping for the latter.This happened once before and lasted about ten days so hopefully we will see the symptoms vanish before our eyes.
I feel sorry for the Drs at the clinic in Texas as the strict protocol for their trial means that the tumour can only be assessed in one certain plain. At Princess Margaret they view everything and they saw the significant result in the sagital images. The Drs in Texas saw this too but could not use this in their results. The image they looked at the tumour was no different. When the next scan comes along in April we will see what has happened then.
And then again:
Written Feb 2, 2009 9:50pm
What a hell of a day.Georgia not well at all, confused and is very vacant when you talk to her. The Dr said brain swelling due ? tumour breaking down and waste products, medication, or a tumour bleed. We all feel the tumour breakdown is the culprit as her blood results are showing this. She has had her steroids increased and we have stopped treatment for two days so we can get her blood work back within limits and not increase more swelling with the treatment.IF she is no better by Wednesday she will have an MRI scan.We are confident we will get over this hurdle. We had a very similar episode in Texas a little worse then. All our Drs have been fantastic. Its amazing even when we are at the other side of the world that everyone just gets on with the job of making sure Georgia is good.
And the next day:
Written Feb 3, 2009 11:15pm
Today brought some improvement in Georgia’s condition. She has not been vacant today but has been very quiet, as she has felt she has had difficulty speaking. This has got better as the day has gone on, and she has not been as tired. We are still off treatment until tomorrow. Her bloods have improved though its been a real fight to get it right. I kept most of the Drs awake last night here and in The U.S.A!!! They were all fantastic. I saw a Dr today who said Georgia’s bone marrow is being supressed by the treatment so I am just waiting for our U.S.A phone call due anytime now to discuss all our findings.We will fight it all and we will be triumphant!!!
Is it me or does it seem strange to say that Georgia is getting better after this episode that has left her clearly compromised? But it’s good to hear that she is regaining speech. The family is high on hope, and my god, if hope could cure cancer, this family would have had their cure. By the tenth, the crisis seems to have passed, but you can tell that Maggie is tired. She is a very strong woman as they continue to fight Georgia’s potassium levels. Beware, ANP HAS POTENTIALLY DANGEROUS SIDE EFFECTS, LIKE ALL OTHER CHEMOTHERAPIES.
On Feb 23, Georgia returns to school.
On March 13, the family goes in for Georgia’s next MRI scan. Over and over, these progress points are clearly stressful times for families, and they dread them. I’m learning a lot about this disease and what it does to people from this project.
Written Mar 13, 2009 4:15pm
Short and sweet, main body of tumour unchanged but the right mastoid opacification is clearing. We have had some positive changes thankfully. Got to get sorted for work will do big message tonight. Its fantastic news for us.
This is somewhat qualified in two days’ time, but at least it seems the family is getting multiple interpretations. If you end up at the Burzynski Clinc, please make sure that you have someone else monitoring your patient’s progress:
Written Mar 15, 2009 5:07pm […] Very busy week over for us. We dont seem to stop at all. We just run around backwards and forwards and try and it work into it. A little disappointing with the report from the M.R.I.There has been a positive change on the right but the written report is poor compared o our previous ones. We have no measurements at all. We will have to wait for Dr Burzynski’s report and then Princess Margaret Hospital too. It did show cerebral and cerebella atrophy but we dont see signs of that but that is new from our last scan.
And then the Clinic contacts the family with scary news:
Just had a call from Texas about scan results. The clinic are a little worried about an area in the thalmi which could be radiation, the mri technique or a new tumour.
They dont want to leave it to chance so we are bumping up the dosage of treatments to the maximum over a daily basis. Cant believe the main pontine section is showing stability and now we may have a new tumour starting. We were always led to believe you dont get secondary tumours from Pontine Gliomas.
They’ve maxed out the dosage, it seems and Georgia is feeling it. The frustration is mounting for the family too:
March 28, the West Australian reports that Georgia is back home, in class, and “nursing a sore ankle from running around too much in the playground.” (On the 18th, we heard that she had tendinitis.)
Written Apr 3, 2009 10:55pm
Georgia’s treatment was increased this week and as anticipated she has been exhausted. She managed school two mornings the rest of the time she stayed home. We managed to do some work from school at home. We are hoping she will improve over the weekend. She is always very cold and has been like that since the second week of radiaiton/motoxafen gadolinium.She had problems with blisters under the nails and painful hands while on treatment. You dont know what damage has been done to brain tissues from the radiaition so the cold could be that too. Dont know what we will do in winter.
[…] I cannot beleive that in 2009 Drs cannot share their knowledge, respect each others expertise and knowledge even alternative treatments. At the end of the day its not about ego’s, pride or anything but respect and consideration for the patients and their families.Share knowledge and let patients know other treatments even in they are nott here in Perth.
She’s right. Doctors should share their information. If Burzynski ever published one of those studies he’s been allowed to do, the other doctors might be able to tell patients something about it other than it bears all the signs of an improbably quack treatment.
And two days later:
Written Apr 5, 2009 8:26am
A hell of a weekend. Georgia is not herself at all, we are still sure its the increase in treatment as we had this on both treatment increases, and the fact she was so well until the 3rd day after the increase.
I asked Georgia if she had been drinking my wine as thats how she acts on occasions. When we speak with the Drs tonight I am sure we will have to increase our steroids again, we were on the reduction and nearly off them. Never mind a minor problem easily solved, but still a worry. She still manages to laugh about it.
God, this is a messy disease.
They cut the ANP and increased steroids, and she started to appear better, but she’s having trouble walking and her speech is labored, and then just a heartbreaking setback:
Written Apr 11, 2009 8:31am
We seem to be riding this roller coaster ride at the moment.A very scary ride indeed. After been so good yesterday Georgia woke this morning with double vision out of her left eye again. This was the only symptom we noticed when she started on this journey.
Obviously I have telephoned Drs in the USA and here in Perth. Both have said it could be some swelling from the treatment as all our problems began when we increased our treatment. We have increased todays steroids, we will have to wait for tomorrow to see if we need to keep on that dose. The thing is she is so much better than what she was. She still has a way to go to what she was last week but the last few days she has improved.Cant believe we have the double vision again.
On the 15th of April, they have a new scan, but they report her memory is getting dodgy. On the 22nd the results are back and the tumor is growing. It’s hard to see how the ANP could possibly be working.
In June, Georgia is having headaches, a new symptom as she heads to her next scan. They are at the one year mark. And then:
Written Jun 18, 2009 3:13am
Bad news im afraid the tumour has progressed. I did not expect things to go so easy I knew it was shit from the start. We are going to take advice from some of the neurosurgeon I think and they say when it progresses its time for a change. Unfortunatley there is not much out there and has we had a radiosensitising agent its become more remote. As you cant use some o the treatments.
As the tumor grows, the Burzynski Clinic, which has far as I can tell has made no difference at all in the progression of the disease, recommends upping the dose. Again.
Written Jun 24, 2009 1:09pm
Official results from U.S.A show a 19% increase in the tumour. We obviously have to decide as a family what we want to do but I am still thinking of the Drs in Texas what they suggest. They want to increase meds to max dose which we have had problems achieving in the past. Do that for a month and re scan and go from there.
The family is really down at this point, debating their next course of action. The rationalization on July 5th, it seems, is that “they’ve only had one bad scan.” They decide to keep with Burzynski until the 24th of July, the date of the next scan. These poor people. As the day approaches, Georgia reports headaches, trouble swallowing, and the whole family is really feeling it. Regarding Burzynski:
No treatment is better than another, all the tumours even though they bare the same name genetically are all different, and respond differently.I am very scared at the minute as I have seen what has happened to some of the other fighters. We get our scan Friday and I feel we will be moving onto a different treatment. Wont ever say we were wrong to go to Texas a s I believe Dr B has the right ideas re genetics, the treatment regime is achievable for any family and he is getting some results, which nobody else can offer. I stand by this treatment all the way.May not work for us but you dont know if its not going to work for your child.We are into 9 months of treatment from Texas.
Initially, they see no significant change in the tumor this time, however her symptoms are still nerve-wracking:
Though she has had numerous problems after her MRI.Unable to speak properly, unable to walk properly. headache and nausea. We have increased dex to 12mgs for 48 hrs.
And the tumor, when the final next report comes in, has grown 44% since April. After this point, Burzynski is no longer mentioned.
On 14 Jan 2010, Georgia passed away following a suspected brain hemorrhage. Her parents made a remarkable gift to St. Jude’s, the tumor, in hopes that the researchers there would be able to learn from it and improve the lives of other young patients. For reliable information about clinical trials, visit clinicaltrials.gov. Please consider donating to St. Jude Children’s Research Hospital, the children’s hospital that once helped a young friend of mine who is no longer with us.