MEDICAL TIME LINE
Howitis TIME LINE May 1993- Jan 1994
I have slight impairment in some of functions, memory, clarity of speech and mathematical ability. Had a fit and taken to Princess Margaret Hospital for an EEG. The EEG shows nothing conclusive.
Oct 29 CT Scan was requested at Bunbury.
Conclusion: suspected tumor.
Taken to PMH. After consultation with Neurologist, we were told Radiologists are not convinced there is any abnormality. Conclusion: Suspected puberty epilepsy, to be controlled by anti-convulsant medication. Persistence, as to what the Bunbury Radiologist had seen in the CT scan, a referral letter was ﬁnally written, requesting an MRI scan of Shontelleʼs brain.
Nov 6 bad news
MRI scan completed and the appearances are those of a relatively high grade glial series tumor of the medial temporal lobe. Re-admitted to PMH for WADA, and Neurological tests before surgery.
Nov 22 good news
I underwent a craniotomy for biopsy of tumour. Neurosurgeon informs us that the initial result from Pathology' first report says the material shows a provisional low grade Astrocytoma.
We are a little relieved by Doctor's comments.
Nov 28 not so good
I contract meningitis from the biopsy surgery. Probable cause as ascertained by Neurosurgeon, Dr Wayne Thomas, was the medical glue used to secure WADA test electrodes to the scalp, this caused a skin reaction and inﬂammation resulting in entry of bacteria on the surgeons incision across one of the inﬂamed sites. Recovery was slow, which extended the hospital stay and caused further delay to my brain tumor diagnosis. Neurosurgeon informs us that the second report from pathology now shows a high grade 3/4 Astrocytoma. Neurosurgeon apologises and says, my case will now be handled by Dr David Baker Head of 3B Oncology Ward.
Dec 16 bad day
My case is now handed over to Oncology. My parents and I have an appointment with Dr Baker Director of Oncology, to give us the ﬁnal diagnosis, prognosis and treatment options. A Doctor Cole and a Social Worker, attended the meeting as well. I was told to sit outside the door by Dr Baker, so I never had an input about what was going to happen to me. He broke the news to my Parents. Your daughter has a Grade 4 Astrocytoma Glioma Tumour. Her outlook is very poor. Dr Baker says he has discussed the case with doctors from the Children's Cancer Group (CCG) in the US, renamed recently to Children's Oncology Group (COG), which the PMH is a member. The Group designs the CCG protocols. Dr Baker insists that we start a new 'state of the art' treatment now available for high grade malignant tumors, called CCG 9922. Dr Baker, after discussions with the CCG doctors, recommends CCG9922 as the best way to go. He then walks my parents through it. Bone harvesting, 7 day intense chemotherapy, 5 weeks of irradiation and side effects with 6 weeks in quarantine for replacement of bone marrow.
This is a shock to them. There is an an urgency to commence treatment straight away. He says that he has already booked theater time for tomorrow morning, Friday 17th, for the bone harvest. Would you please sign the protocol consent form for CCG 9922 and we will get started. When asked about other options, his reply was " None, and if there were, you would be wasting your money, time and effort". After the shock of prognosis, my parents needed time to think, before signing up. They made an excuse to return home for the weekend, so I could open my Christmas presents early. Dr Baker was disappointed, however he said he would re-arrange the theater time, and jotted down the phone number for Dr Cole and Dr Batte, on the back of the CCG consent form..... to confirm the booking. Dad phoned the next morning and was told to bring me in on Monday for prepping, and the operation will be performed on December 22nd. In that five day break we researched and found another option to CCG 9922. We found Dr Burzynski's Antineoplastons Treatment.
Mum phoned Dr Cole on Dec 21 and said we would see her after Christmas. Dr Cole replied, "I don't think that's wise". Mum then spoke to Dr Fiona Frazer to ask at the desk of Oncology, whether anyone had heard of Antineoplastons. The reply was, a firm no. We contact Burzynski Clinic to get his opinion on my Case. After reviewing, Dr Burzynski offers the Antineoplaston Protocol and sets an appointment on Jan 7 at the Burzynski Clinic.
Broviac Catheter ﬁtted into the sub-clavia vein, ready for antineoplaston infusion on Jan 7 at the Burzynski Clinic in the US. Upon leaving the PMH hospital, we bumped into my Neurologist Peter Walsh, with his children in hand, he knew we opted for ANP. We asked, "what would you do if your daughters were in the same situation - chemo or antineoplastons" ? He replied "knowing the lack of success with our chemo/radiation options stated "I would be doing exactly the same as you are. I would be taking her to the US Clinic". This meant a lot to us.
Jan 5 1994
We collect all medical records and scans from the PMH Admin Office for transfer of my medical case to the Burzynski Clinic. Amongst the documents, a Dec.13th fax letter had been sent to Dr Baker from the Head of US Childrens National Medical Centre, Roger Packer MD, who mentors the COG trials & Dr Baker. Dr Packer's speak is strong, but diplomatic in the letter when noting the second Pathology and MRI reports, that Dr Baker had sent him previously.
We were not privy to the information in the fax letter or the pathology report, at the December 16th 1993 appointment.
Jan 6 1994
We depart on our journey, with the power of hope instilled into our souls, and whatever the outcome, the three of us know deep in our hearts, Antineoplastons was the right choice for us.
On our return from the US, we obtained further updates on my Pathology, dated 3rd & 11th of January 1994. Note Pathologists Report & Run Dates from Dr Lucy Rorke Page 1 Page 2 and Dr Brennan's report to the PMH Page 3.
The Pathologists & Radiologists diagnosis of the tumour and slides differ, however the tumour is growing at 10% per month. The actions taken by Dr Baker and his delivery of prognosis to my Parents is plainly deceptive and sinister. He blatantly states that the tumour is a grade 4 astrocytoma glioma.
Disclaimer: The information on this website simply reflects the story of my personal experience and information we have obtained from The Freedom of Information Act, hospital administrators and other sources involving, newspaper articles, public government reports & Inquiries, medical documents, journals, information written by doctors, clinicians and medical researchers.