New leash on life
Who do you want to hear about first; Gilly or Liylah? We'll go in alphabetical order, alright?
We met Dr. Kavan, the medical oncologist today. He is quite adamant about the need to treat the tumour aggressively (Judith warned us of this early on, so we expected this perspective). He informed us that it is still not certain that Gilly is eligible for the study, but he says it doesn't matter; it is what Gilly needs. He is still working on presenting the case. He says he will 'lie a little; make it less clear' (to be honest, I'm not sure if he meant lie to the health insurance company or to those deciding on who may participate in the study).
One scary aspect of the information is the cost. If he is on-study, it is free. If not, the Temodal is frightfully expensive. Luckily, I checked with my health insurance company this afternoon and PHEW, we are covered regardless.
I keep getting conflicting information on this; Dr. Kavan claims that the tumour is not cancerous. He said that this doesn't matter, though, because it behaves as if it is. He believes that aggressive treatment is necessary: "You need to win the battle. Otherwise you are dead." Gilly said he appreciates the honesty. I gasped internally.
The treatment he urges us to sign up for is called Temozolomide-Based Chemoradiotherapy Regimen. The chemo will enhance the efficacy of the cancer (is that accurate?). It sensitizes the tumour cells to radiation. He pointed out that if you miss the opportunity (do the radiation without the chemo), you cannot go back; no second chances. He believes that the study will inevitably prove that Temodal is helpful, but we have no time to wait. He declared the drug to be safe, non-toxic, and unlikely to do harm.
He told Gilly that it is important to remain positive, and not read statistics. He said, "You are 1; the statistics are about 'persons.' He prescribed sports, good food and a healthy lifestyle to go along with the upbeat attitude (which Gilly happens to have). Gilly assured him that he has trouble not being active, so he intends to continue along this path.
I asked if the Montreal General is better or the same as the Jewish (we have to decide between the hospitals, although Dr. kavan and Dr. Mohr will follow Gilly regardless). Both Dr. Souhami and Dr. Sultanem are competent, but I wondered about technology and services in the hospitals and how they might differ. Dr. Kavan was hesitant at first to make his choice clear, but after a couple of minutes he openly admitted that Gilly would be better off having treatment at the General, since he will be followed at the MNI in that case. "That is the best brain hospital." He acknowledged that the Jewish is best in terms of oncology, but, much to Dr. Mohr's chagrin (he claims), the MNI is his preference.
We have another appointment with Dr. Kavan in 2 weeks. Gilly is keen on trying the treatment mentioned above rather than waiting and doing nothing. We are still ruminating (spell check doesn't like the word, but I do). We have yet to receive opinions from key medical figures. We will go with Dr. Souhami at the MNI regardless.
Tomorrow Gilly has a blood test scheduled for 8:00 a.m. at the General, followed 2 hours later with a CT scan. Apparently, the mask for radiation will be prepared at that time. I'm not totally clear on that, because it is still a mystery to me.
I'm on spring break this week, and so far it has been well spent. I have been able to accompany Gilly to every appointment, and have documented the information accordingly. These are key meetings where information is delivered and decisions hinge upon these technical details. So we haven't had a chance to get to Birch Point yet, but we have done a lot of leg work!
Now it's Liylah's turn: She loves her walks around the block with Gilly and Yaron. She behaves well on her new retractable leash. Grandma Shirley claims to love her. What could be bad?
We met Dr. Kavan, the medical oncologist today. He is quite adamant about the need to treat the tumour aggressively (Judith warned us of this early on, so we expected this perspective). He informed us that it is still not certain that Gilly is eligible for the study, but he says it doesn't matter; it is what Gilly needs. He is still working on presenting the case. He says he will 'lie a little; make it less clear' (to be honest, I'm not sure if he meant lie to the health insurance company or to those deciding on who may participate in the study).
One scary aspect of the information is the cost. If he is on-study, it is free. If not, the Temodal is frightfully expensive. Luckily, I checked with my health insurance company this afternoon and PHEW, we are covered regardless.
I keep getting conflicting information on this; Dr. Kavan claims that the tumour is not cancerous. He said that this doesn't matter, though, because it behaves as if it is. He believes that aggressive treatment is necessary: "You need to win the battle. Otherwise you are dead." Gilly said he appreciates the honesty. I gasped internally.
The treatment he urges us to sign up for is called Temozolomide-Based Chemoradiotherapy Regimen. The chemo will enhance the efficacy of the cancer (is that accurate?). It sensitizes the tumour cells to radiation. He pointed out that if you miss the opportunity (do the radiation without the chemo), you cannot go back; no second chances. He believes that the study will inevitably prove that Temodal is helpful, but we have no time to wait. He declared the drug to be safe, non-toxic, and unlikely to do harm.
He told Gilly that it is important to remain positive, and not read statistics. He said, "You are 1; the statistics are about 'persons.' He prescribed sports, good food and a healthy lifestyle to go along with the upbeat attitude (which Gilly happens to have). Gilly assured him that he has trouble not being active, so he intends to continue along this path.
I asked if the Montreal General is better or the same as the Jewish (we have to decide between the hospitals, although Dr. kavan and Dr. Mohr will follow Gilly regardless). Both Dr. Souhami and Dr. Sultanem are competent, but I wondered about technology and services in the hospitals and how they might differ. Dr. Kavan was hesitant at first to make his choice clear, but after a couple of minutes he openly admitted that Gilly would be better off having treatment at the General, since he will be followed at the MNI in that case. "That is the best brain hospital." He acknowledged that the Jewish is best in terms of oncology, but, much to Dr. Mohr's chagrin (he claims), the MNI is his preference.
We have another appointment with Dr. Kavan in 2 weeks. Gilly is keen on trying the treatment mentioned above rather than waiting and doing nothing. We are still ruminating (spell check doesn't like the word, but I do). We have yet to receive opinions from key medical figures. We will go with Dr. Souhami at the MNI regardless.
Tomorrow Gilly has a blood test scheduled for 8:00 a.m. at the General, followed 2 hours later with a CT scan. Apparently, the mask for radiation will be prepared at that time. I'm not totally clear on that, because it is still a mystery to me.
I'm on spring break this week, and so far it has been well spent. I have been able to accompany Gilly to every appointment, and have documented the information accordingly. These are key meetings where information is delivered and decisions hinge upon these technical details. So we haven't had a chance to get to Birch Point yet, but we have done a lot of leg work!
Now it's Liylah's turn: She loves her walks around the block with Gilly and Yaron. She behaves well on her new retractable leash. Grandma Shirley claims to love her. What could be bad?
posted by Gilly at 7:11 PM
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