A rash decision
Sorry Gittit. I forgot the title we decided on this afternoon. You'll have to remind me.
Gilly partied last night with the boys 'til after 11:00, and it meant a great deal to him. He was missed at Yaron's game (4 to 2 for the 'good guys' as Joey says), but he'll appear tomorrow evening for the BIG one. If we win, we move onto the round robin stage (I believe this means that the winners from the different districts play for the coveted medal). [Can you tell I know nothing about hockey? I still don't know what off-side really means, and have trouble keeping track of Yaron since he changed from a distinct blue to an ordinary black helmet. But I'm there for him regardless].
Gilly developed a rash overnight, I'm guessing as a reaction to the dye they injected yesterday for the CT scan / mask fitting. I wanted to take him in to emergency to have it checked, but not surprisingly, he balked at my suggestion.
He had a sleepless night with an itchy rash and sore legs. He drank some water in the wee hours of the morning, and felt reportedly 'much better.' He had been advised to drink plenty of water for 48 hours after scan, so as to flush the dye out of his kidneys, and so I tried to 'water' him in small increments all day long. He was not all that cooperative; he's got a mind of his own. The fact that he can think and decide for himself is a gift we must be thankful for; I hesitate to deprive him of making his own choices. I am as persistent as he is, though, so, so never fear my loyal readers, I'm doing all I can to promote his good health while still allowing him his dignity.
I find it rather disturbing that when he had the dye at the Montreal General last week, they never mentioned anything about drinking water to flush the dye out. Did they forget, or was it mentioned this time because he had the same procedure twice over an eight day span??? It's scary to think that such an important piece of information may have been left out.
I wonder if he developed the rash because he had the dye twice within a relatively short period of time??? Or is the rash due to something totally different?? Where's Dr. House when you need him?
Today, Sheryl filled me in on all that she had written in our event filled 'medical journal.' She explained that at first, Gilly was not too impressed with the way the people at the Jewish handled him while fitting him for his mask. He felt that they jostled him around too much. At the Montreal General, they had his head pinned down, but at the Jewish, he had to struggle to remain perfectly still. However, when all was said and done, he found the Jewish, overall, to be more 'haimishe' (no spell check in the world would allow this spelling, but hey, I spell it as I hear it) and the equipment to be state of the art. He's quite comfortable receiving treatment at this facility.
Gilly and Sheryl were told that Dr. Sultanen would be Gilly's radio-oncologist, which I fully expected, because Dr. Souhami works out of the Montreal General and the Neuro. But the question as to whether or not Dr. Kavan will see him through the Jewish or the Neuro remains unanswered. Our appointment on Wednesday at 9:30 should shed some light on the matter.
I want to be 1000% (yes, the extra zero is there on purpose) sure that Gilly's protocol will, in the end, include the Temodal. Brijit You, the radio-oncology nurse was unaware of the plan for the combined treatment, and Dr. Sultanem did not mention this aspect at all to Sheryl and Gilly. The drug is costly (an understatement), so I do not want to fill the prescription until I know. They've done a few switcheroos already, so I anxiously await confirmation, and not without trepidation. My health plan covers most of it, but even so...I'm skeptical as to whether or not they will do what they said they would:
First he was eligible for the study, then apparently not based on the fine print, then maybe at Dr. Kavan's insistence he would be accepted, then for sure not, according to Sultanen. When he called to tell me this news, I told Dr. Sultanen that we chose the Souhami / Kavan team at the Neuro (based on Kavan's recommendation). We were sent to the General for the mask, and then we took a detour to the Jewish for the mask because there was no room at the General, and were told that Sultanem was to be Gilly's doctor. I fear we're on a bit of a merry-go-round and I'm getting dizzy. Hopefully, we'll have some definite answers this week, and we can forge ahead and do what needs to be done.
The other information that Gilly and Sheryl received centered around diet and basic body protection. For example, he was advised to have protein at every meal, eat a balanced diet and wear a hat outdoors during and for the first year after treatment. The protein is no problem, and Gilly's appetite has been fantastic so far. I love to cook almost as much as I love to feed (especially those people I treasure), and so I know we can follow these orders. But Gilly has never worn a hat in all the years I've known him. Sometimes, I think that 'danger is his business.' He likes to laugh in the face of adversity and challenge the stars. So if you see him outdoors without a hat, please feel free to remind him that he's missing his chapeau, and if that doesn't work, just tattle tale.
Gilly partied last night with the boys 'til after 11:00, and it meant a great deal to him. He was missed at Yaron's game (4 to 2 for the 'good guys' as Joey says), but he'll appear tomorrow evening for the BIG one. If we win, we move onto the round robin stage (I believe this means that the winners from the different districts play for the coveted medal). [Can you tell I know nothing about hockey? I still don't know what off-side really means, and have trouble keeping track of Yaron since he changed from a distinct blue to an ordinary black helmet. But I'm there for him regardless].
Gilly developed a rash overnight, I'm guessing as a reaction to the dye they injected yesterday for the CT scan / mask fitting. I wanted to take him in to emergency to have it checked, but not surprisingly, he balked at my suggestion.
He had a sleepless night with an itchy rash and sore legs. He drank some water in the wee hours of the morning, and felt reportedly 'much better.' He had been advised to drink plenty of water for 48 hours after scan, so as to flush the dye out of his kidneys, and so I tried to 'water' him in small increments all day long. He was not all that cooperative; he's got a mind of his own. The fact that he can think and decide for himself is a gift we must be thankful for; I hesitate to deprive him of making his own choices. I am as persistent as he is, though, so, so never fear my loyal readers, I'm doing all I can to promote his good health while still allowing him his dignity.
I find it rather disturbing that when he had the dye at the Montreal General last week, they never mentioned anything about drinking water to flush the dye out. Did they forget, or was it mentioned this time because he had the same procedure twice over an eight day span??? It's scary to think that such an important piece of information may have been left out.
I wonder if he developed the rash because he had the dye twice within a relatively short period of time??? Or is the rash due to something totally different?? Where's Dr. House when you need him?
Today, Sheryl filled me in on all that she had written in our event filled 'medical journal.' She explained that at first, Gilly was not too impressed with the way the people at the Jewish handled him while fitting him for his mask. He felt that they jostled him around too much. At the Montreal General, they had his head pinned down, but at the Jewish, he had to struggle to remain perfectly still. However, when all was said and done, he found the Jewish, overall, to be more 'haimishe' (no spell check in the world would allow this spelling, but hey, I spell it as I hear it) and the equipment to be state of the art. He's quite comfortable receiving treatment at this facility.
Gilly and Sheryl were told that Dr. Sultanen would be Gilly's radio-oncologist, which I fully expected, because Dr. Souhami works out of the Montreal General and the Neuro. But the question as to whether or not Dr. Kavan will see him through the Jewish or the Neuro remains unanswered. Our appointment on Wednesday at 9:30 should shed some light on the matter.
I want to be 1000% (yes, the extra zero is there on purpose) sure that Gilly's protocol will, in the end, include the Temodal. Brijit You, the radio-oncology nurse was unaware of the plan for the combined treatment, and Dr. Sultanem did not mention this aspect at all to Sheryl and Gilly. The drug is costly (an understatement), so I do not want to fill the prescription until I know. They've done a few switcheroos already, so I anxiously await confirmation, and not without trepidation. My health plan covers most of it, but even so...I'm skeptical as to whether or not they will do what they said they would:
First he was eligible for the study, then apparently not based on the fine print, then maybe at Dr. Kavan's insistence he would be accepted, then for sure not, according to Sultanen. When he called to tell me this news, I told Dr. Sultanen that we chose the Souhami / Kavan team at the Neuro (based on Kavan's recommendation). We were sent to the General for the mask, and then we took a detour to the Jewish for the mask because there was no room at the General, and were told that Sultanem was to be Gilly's doctor. I fear we're on a bit of a merry-go-round and I'm getting dizzy. Hopefully, we'll have some definite answers this week, and we can forge ahead and do what needs to be done.
The other information that Gilly and Sheryl received centered around diet and basic body protection. For example, he was advised to have protein at every meal, eat a balanced diet and wear a hat outdoors during and for the first year after treatment. The protein is no problem, and Gilly's appetite has been fantastic so far. I love to cook almost as much as I love to feed (especially those people I treasure), and so I know we can follow these orders. But Gilly has never worn a hat in all the years I've known him. Sometimes, I think that 'danger is his business.' He likes to laugh in the face of adversity and challenge the stars. So if you see him outdoors without a hat, please feel free to remind him that he's missing his chapeau, and if that doesn't work, just tattle tale.
posted by Gilly at 6:17 PM
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