Well things were seemingly travelling really well for us until the 12th of August.
3 rounds of PCV chemo down, one to go, and no serious complications. He was very nearly at the end of the 6 month driving ban that resulted from the first single seizure ... just 3 weeks to go. He was looking forward to regaining that freedom and independence more than anything else.
Life seemed to be returning to a semblance of normal.
Then on 12 August he had an MRI that reported new multi foci changes in areas very distant from the original tumour - one on the other side of his brain in the temporal lobe.
The MRI referral had only been written by the oncologist at our insistence, because it had been 3 months since the last one.
As far as we know, none of the specialists we were seeing (and who got a copy of the MRI report at our request) reviewed the MRI or took note of the findings, even the referring oncologist.
Then on 20 August out of the blue, he had a very serious seizure, or possibly series of seizures while he was working at home alone. It had been almost 6 months since his last seizure, and we had become over confident and complacent. I failed to ring from work during the day to check on him.
He was not found until my son returned home from school and discovered him with head injuries and covered in blood and vomit. He had aspirated stomach contents into his lungs. He was in poor condition, tachycardic, and had been in this state alone for at least 5 hours.
My son couldn't find the home cordless phone, so he ran out into the street in front of a passing car, and got the driver to call an ambulance.
At the base hospital he was unresponsive, his oesophagus and trachea were burnt by stomach acid, and his blood oxygen level was not great. He had head injuries, and a chest x ray showed he had already developed lung inflammation which progressed into infection over the next 24 hours.
Disappointingly it emerged that his Dilantin levels were very low - certainly not in the therapeutic range. No one had been monitoring his Dilantin levels, or bothered to mention to us that they needed to be monitored.
When he came home 48 hours later, he still had some periodic cognitive and memory deficit and required supervision.
Emotionally he was fixated on one thing only - he would now not be allowed to drive for 12 months.
After returning home his cognitive function worsened, he wasn't eating and I panicked. He had lost 7kg, and was cycling between fully cognitive periods, and periods where he was confused and disoriented.
I tried to get him readmitted to a local private hospital, but they discharged him almost immediately.
I was basically told that he was nearing end stage, and that I should expect a decline in cognitive function. My protests that he was postictal, not end stage were gently dismissed. The staff insisted on recording his condition as GBM, despite my very clear insistence that he had a grade 3 oligo.
The oncologist rang that night - he had FINALLY gotten around to reading the MRI report from August 12 (although he hadn't looked at the images because they wouldn't load on his laptop?!). He stated that based on the new multi focal finding on the report, we were not dealing with an oligo at all, and he was of the opinion that it must be chemo refractory GBM.
We saw the neurosurgeon the following Friday - he was crushingly blasé. He failed to mention the MRI changes, and only reluctantly discussed them when we brought them up. He basically said nothing more could be done, and we would just have to get used to the seizures.
He was dismissive, vague and deliberately evasive.
He also took no responsibility for the fact that the Dilantin levels had not been monitored by any one - not one of the many Dr's and specialists we had been seeing had mentioned that Dilantin levels need to be monitored. As the neurosurgeon had prescribed the dilantin, ultimately I feel he had the responsibility to at least advise us to ensure the levels were monitored.
He did recommend a PET to investigate the MRI changes (after we mentioned them!).
As soon as we left the consultation, we made an appointment with the GP, with the aim of getting a second opinion from another neurosurgeon.
The PET was the following Friday, and we saw the new Neurosurgeon the next Monday.
From the very first consultation, we realised what a huge mistake the previous Neurosurgeon had been. The new Neurosurgeon was shocked at how minimal Ross's first surgical resection had been, and said all visible tumour could and should be removed. He took one glance at the MRI and said there was absolutely no reason not to remove all visible abnormality.
This is in stark contrast to the first surgeon, who had said that if he took any more out, it would impact the motor strip and eloquent centre, and that Ross would lose speech and could lose "an arm and a leg".
We promptly ditched our entire treatment team, and started again with the new Neurosurgeon, a new Oncologist and a new Radiation Oncologist.
Best decision ever.
The 2nd surgeon was so confident, he performed the surgery 4 days later, without awake craniotomy. He removed pretty much the entire left frontal lobe, from skull to midline. There was ~140 cubic cm of tissue sent to pathology, and this time the histology came back all grade 2 oligo. This has made us hopeful that the first surgery caught all the grade 3 tissue area. Obviously we know that the damn thing will come back eventually, but removing all visible tumor in the first place seems sensible!
The improvement was immediate - in fact he went back to work in his job 3 weeks later! He is now completely normal in speech, cognitive function and motor function.
The 4 week post surgical MRI shows little except normal looking brain and a really, really big hole where the left frontal lobe used to be.
4 weeks after surgery, the new Oncologist and new Radiation Oncologist started him on 6 weeks of radiation in combination with concomitant Temodar chemotherapy.
We would both go to work at 7.30 in the morning and then drive down to Brisbane in the afternoon for radiation, which was usually at about 5.30pm. The radiation wasn't anywhere as bad as we expected. Sometimes he would see flashes of colored light when the radiation hit areas of the brain responsible for visual processing. The mask sometimes put pressure on his eyes, so his sight was disturbed for a while afterwards.
The radiation treatments made his skin feel tight, and made his brain feel buzzing and stirred up like the start of a headache. He was pretty irritable and short tempered for the rest of the evening, although the 3 hour drive home from Brisbane every night didn't help that.
He found that he felt less effect on his skin from the radiation when he switched from normal shampoo and conditioner to using only Johnson and Johnson baby shampoo.
He finished the 6 weeks of radiation last Tuesday, and so far he hasn't had any fatigue or serious complications.
He did get headaches and vomiting (presumably from brain swelling) in the third week, so he was started on dexamethazone, which stopped the pain and vomiting within about 48 hours.
His hair thinned but didn't completely disappear in two patches - one large area on the left forehead, and a small round patch on the top at the back of his head.
Since radiation he has developed a slight tremor in the right hand, and very slightly in the right hand side of his face, which is so mild he hasn't noticed it himself.
He still gets a stirred up feeling in the brain when he gets tired.
We were told that the radiation symptoms usually peak 10 days after radiation ends, which means he should feel the worst at the end of this coming week.
The dexamethasone has caused acne all over his body, but now that the radiation is over, he weaning is off it and will be free of it in 2 weeks.
Other than that, he looks and acts completely normally other than being somewhat easily annoyed, and he is still working part time.
He has a break from treatment now until January, and has his next MRI on December 24 to get a post radiation baseline.
In January he starts 6 cycles of intensified Temodar Chemotherapy.
Overall, I desperately wish I had gotten a second opinion earlier, but all said and done I am deeply thankful to our current medical team.
The bright spot on the temporal lobe has not developed into anything, and the Neurosurgeon is of the opinion that it is nothing to worry about. He says he sees a lot of "unidentified bright spots" that don't turn out to be anything.
Don't just ask questions - demand answers.
Google your drugs and ask should the levels be monitored regularly.
Insist on appropriate tests, reports and treatments.
Follow up on reports yourself. Ensure your Dr's actually receive and review them.
If you don't feel comfortable with your Dr's, if they are evasive or dismissive and you don't get the answers you ask for, get a second opinion.
Don't be afraid to sack the whole team and go elsewhere.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.