Waiting, healing, hoping...

Again, a week has sped by and I have been waiting to write until we hear something about the clinical trial we found out about on Monday, but we are still waiting. Manford is gradually gaining strength each day; yesterday he walked to the bus stop with the OT, and he is more steady and confident around the house. His main problem at this point is low blood pressure--orthostatic hypotension; when he stands up, his blood pressure drops, and he gets a bit shaky, so I am still nervous to leave him alone in case he should fall. Other than that, he is doing well; he says he has a bit more trouble concentrating than usual, but that is going around...

Monday we went to the oncology clinic again and talked to a second oncologist. The first oncologist had spoken to him about Manford after our session, and called me back and said that he had been convinced by this second doctor (who is more specialized in neurooncology) that more aggressive treatment was appropriate, and there was a clinical trial we might be interested in. So Monday afternoon this new doctor (Tills) spent an hour and a half talking with us, and was more optimistic about Manford's chances of responding to chemotherapy than the other. I wonder if this is an age thing...the first doctor, who looked to be in his 30's, considered Manford to have a poorer prognosis (and unlikely to benefit from chemotherapy) because he was over 60...this second doctor, who looks to be in his 50's, put the line up a bit, at 70.

They are starting a clinical trial (based in Canada, but also governed from Geneva) of Avastin, which is a promising new medication that inhibits blood vessel generation. If he participates, Manford would either get the standard treatment, which is 6 weeks of radiation and chemotherapy, or standard treatment plus Avastin, which goes along with the chemotherapy. It is a double blind, so we won't know which he is getting, but he would also get very careful follow-up...but since his tumor is a rare variant of the more typical glioblastoma, someone in Geneva has to decide whether he is even eligible to consider for the study, and we have been waiting to hear the verdict on this. If he isn't eligible, he will still get the standard treatment, and I suppose there will be less hassle with repeat visits (the Avastin requires IV administration every two weeks during radiation and every three weeks after, or something like that).

They started the process of preparation and planning for radiation on Monday, making a plastic mask (out of kind of web, so not as claustrophobia-stimulating as it might be) to immobilize his head, and doing a CT scan, so we were there 3 1/2 hours in all. The clinic is very comfortable--not fancy, but the people are very nice and supportive and there are volunteers everywhere offering cups of tea.

Then Tuesday we had a visit from the nurse from the cancer society, who was also very warm and helpful, and spent two hours with us describing all the kinds of supports they can offer, including transportation to treatment, a brain tumor support group that is starting this month, counseling, information, meals, emergency funding if we needed it (we are lucky and don't, but it is good they have this), visits from the nurse, and maybe a volunteer "bloke" who will come and visit Manford so I can go to the grocery store...

The kids are settled in school; last night was "meet the teacher" night for parents at Emily's school, and I was again impressed by the headmaster, and really liked her teacher. This is good--last year she had a young man who was just too new, and seemed scared to death all the time. She liked him, but I'm glad she has someone with more experience now--Emily seems very happy and seems to be making new friends and not complaining of teasing from boys, which was the big problem last year. And Joseph seems happy to be back at school, in spite of himself, and is delving in to a very techy curriculum (Math, Programming, Chemistry, Physics, English, and PE). In English he is doing some project on how language is used to represent some topic, and has cleverly chosen the topic of video games, so he can say he's doing his homework as he is surrounded by his video game magazines...

So, we wait, and heal, and hope--
Carrie