Today was a busy day. I've been lucky enough that my work has allowed me to work from home for the past few weeks so that I can keep an eye on Pablo and today I had to go into work for a little bit so I brought Pablo with me. Once I finished showing off his big brain tumour scar to my co-workers, I took him to see our family doctor.
Pablo has had a couple of episodes in the last few days where his right side has gone quite numb and his chest has felt heavy. It is possible that these were seizures and I say that because some blood work results came back that showed that his levels for an anti-seizure drug he is taking were REALLY low. The drug is called Dilantin and his levels should have been between 40 and 80 and his level was a 22. So the dose of Dilantin that he is taking daily is not sufficient and that has now been increased. Over the last couple of days, Pablo has also started weaning himself off of the Decadron (steroid for anti-swelling) and the Dilaudid (derivative of morphine). Due to this, he has been more agitated (withdrawl from morphine) and he finds his head and jaw are hurting much more. He's having a really hard time opening his mouth even half way.
Pablo's been doing a ton of research on the 'next steps' and he's come across some interesting statistics on his type of tumour. Pablo's tumour was a Grade II atypical benign meningioma. 7% of people with meningiomas will have this Grade II atypical kind. According to Wikipedia: In the case of a Grade II or Grade III meningioma, the current standard of care involves post-operative radiation treatment regardless of the degree of surgical resection. This is due to the proportionally higher rate of local recurrence for these higher grade tumors. Up to one third of people with meningiomas who undergo an operation will be left with obvious residual tumor. More than half of people with residual tumor after an operation will have regrowth of the tumor by 10 years's time and about 10 percent will not have had regrowth by 15 years's time.
While Pablo was researching radiation treatment, he came across proton therapy. Proton therapy is a type of particle therapy which uses a beam of protons to irradiate diseased tissue, most often in the treatment of cancer. Proton therapy is most effective against rare tumors in confined spaces because the technique is so precise it limits potential side effects and spares healthy tissue nearby. Radiation has a 4-5 mm room for error (zapping healthy cells 4-5 mm from the tumour cells) whereas proton therapy is only around 1mm. Proton therapy is much more accurate than radiation. The only problem is that there are no clinics in Canada that do proton therapy and there are only 4 (I think) in the US. Pablo contacted one of these clinics and the cost for a round of treatments (that would last around 3 months) is around $50,000-$60,000 US (and possibly more...). That doesn't include room and board for those months either since Pablo would have to re-locate during treatment.
So, more research and more doctor's appointments...