After meeting with the surgeon a couple of weeks ago, we decided not to pursue the surgery option. Our surgeon considers himself quite an aggressive surgeon (puts himself at 8 out of 10 in terms of being willing to go in where others might not) but still has significant concerns about trying to remove any of Ramsy's tumor. He feels there is a high risk of leaving Ramsy not only unable to communicate, but also unable to understand language and potentially paralyzed. Essentially, the worst case scenario would be that we end up with Ramsy as a nice cooked carrot in a hospital bed.
So.... the next day we met with the nurse who is in charge of the drug studies at Cancer Care and she presented us with the information about a very new drug that stops the enzyme which allows a glioblastoma multiforme tumor to grow out of control. The main side effects that they have seen so far in the study are intestinal "distress", shall we say, and sometimes fatigue or headache. Participating in this study will not prevent Ramsy from using other treatments down the road, and he would be able to withdraw from the study at any time for any reason if he chose.
It seems like a low-risk option, so we have signed up for this and Ramsy started taking the drug last Saturday. It is in pill form, which he takes every morning before he eats. Once a week he must go to Winnipeg to see the study nurse and have blood tests. He will have an MRI every 8 weeks, and as long as the tumor stays stable (or even shrinks!) he will remain in the study. If there is any sign of tumor growth, he will go off the study drug and on to a more standard treatment. So far, we have seen almost no side effects except for one isolated incident. 'Nuff said.
As for the flood situation here, so far, so good in our town. The government did not have to release as much water as they had thought and the flooding was not nearly as extensive as projected. There is still water in the fields, and the water table is very high (not to mention the river!) but it looks OK for now.
Tuesday, May 31, 2011
Saturday, May 14, 2011
New steps
We met with Ramsy's oncologist on Friday to get the results of last week's MRI. The doctor said that the tumor is still active, although it is not significantly bigger than it was in November, only slightly bigger. This indicates that the current treatment plan is not effective, so we will be switching treatments and, therefore, getting a new oncologist.
The new doctor was there to assess Ramsy's status- how much his speech and movement are affected, and a couple of other symptoms. He discussed several treatment plans with us, including trying a clinical trial drug, staying on the same drug but on a different dosage and schedule, and possible surgery. When Ramsy initially met with the neurosurgeon here in November, the surgeon was concerned about potentially causing significant damage to Ramsy's communication or mobility. At that time, the tumor was only having a rather small effect on both those areas; however, now that it is significantly impacting those areas, surgery to remove some of the tumor may be an option.
We are waiting to receive more information on these three treatment options- on Monday or Tuesday we should hear back from the new oncologist- before we make a decision. We would appreciate prayers for wisdom for us and each of the doctors involved in the decision process! Ramsy is happy for this opportunity, as he felt frustrated with the limited results of the 5-on, 23-off plan he has followed for the last three months.
One cool thing, however: we realized last week that he can actually move his right arm sometimes. He has managed several times to bend it to a 90-degree angle, which he has not been able to do since January or February. His energy has also been good for the last couple of weeks, so we are encouraged that somehow, there has been a little improvement.
Many people have asked about the flood situation here. As far as anyone can tell, the water is not supposed to come over the railroad tracks which are about half a block south of us. There has been much sandbagging here in Oakville, including on the one street that is south of the tracks, and lots of people are nervous about their homes. We will wait and see what happens.
The new doctor was there to assess Ramsy's status- how much his speech and movement are affected, and a couple of other symptoms. He discussed several treatment plans with us, including trying a clinical trial drug, staying on the same drug but on a different dosage and schedule, and possible surgery. When Ramsy initially met with the neurosurgeon here in November, the surgeon was concerned about potentially causing significant damage to Ramsy's communication or mobility. At that time, the tumor was only having a rather small effect on both those areas; however, now that it is significantly impacting those areas, surgery to remove some of the tumor may be an option.
We are waiting to receive more information on these three treatment options- on Monday or Tuesday we should hear back from the new oncologist- before we make a decision. We would appreciate prayers for wisdom for us and each of the doctors involved in the decision process! Ramsy is happy for this opportunity, as he felt frustrated with the limited results of the 5-on, 23-off plan he has followed for the last three months.
One cool thing, however: we realized last week that he can actually move his right arm sometimes. He has managed several times to bend it to a 90-degree angle, which he has not been able to do since January or February. His energy has also been good for the last couple of weeks, so we are encouraged that somehow, there has been a little improvement.
Many people have asked about the flood situation here. As far as anyone can tell, the water is not supposed to come over the railroad tracks which are about half a block south of us. There has been much sandbagging here in Oakville, including on the one street that is south of the tracks, and lots of people are nervous about their homes. We will wait and see what happens.
Sunday, May 8, 2011
Can't think of a good title!
Hi everyone,
We are back from our family adventure in Morden. We had a lovely time- all the kids swam and swam until they had rashes from the chlorine, there was an abundance of food (anyone who has never drunk cream gravy straight from the pitcher doesn't know what they're missing!) and the adults got lots of time to talk and talk and talk in between the eating. Since we were all in the same hotel, Ramsy could head off to our room for a rest whenever he needed to and then join the crowd later on. In spite of the snowstorm, everyone seemed to have a blast!
Interestingly, Ramsy's speech had been very labored for about a week and a half, but a couple of days after we got home, it smoothed out. On Friday we met with a speech-language pathologist for an assessment. She listened to him talk for quite a long time, asked him questions about himself and his work, and asked him to describe what was going on in a picture she showed him. (We got quite a kick out of this picture, evidently from the 50s or 60s, showing a woman in a dress and apron wiping a dish at the kitchen sink as the water poured over the edge onto the floor and two children behind her swiped cookies from the pantry!) After this was finished, she said that she recognized two issues in his communication: aphasia and apraxia. They commonly occur together, and one is to do with an interruption in the brain's signals to the muscles in the mouth/throat that form the sounds, and the other is to do with how his brain selects words. She wants him to come two or three times a week for a couple of weeks, and then less often after that. We are hopeful that this will be helpful for him; it's so frustrating for him not to be able to say what he is thinking!
We are back from our family adventure in Morden. We had a lovely time- all the kids swam and swam until they had rashes from the chlorine, there was an abundance of food (anyone who has never drunk cream gravy straight from the pitcher doesn't know what they're missing!) and the adults got lots of time to talk and talk and talk in between the eating. Since we were all in the same hotel, Ramsy could head off to our room for a rest whenever he needed to and then join the crowd later on. In spite of the snowstorm, everyone seemed to have a blast!
Interestingly, Ramsy's speech had been very labored for about a week and a half, but a couple of days after we got home, it smoothed out. On Friday we met with a speech-language pathologist for an assessment. She listened to him talk for quite a long time, asked him questions about himself and his work, and asked him to describe what was going on in a picture she showed him. (We got quite a kick out of this picture, evidently from the 50s or 60s, showing a woman in a dress and apron wiping a dish at the kitchen sink as the water poured over the edge onto the floor and two children behind her swiped cookies from the pantry!) After this was finished, she said that she recognized two issues in his communication: aphasia and apraxia. They commonly occur together, and one is to do with an interruption in the brain's signals to the muscles in the mouth/throat that form the sounds, and the other is to do with how his brain selects words. She wants him to come two or three times a week for a couple of weeks, and then less often after that. We are hopeful that this will be helpful for him; it's so frustrating for him not to be able to say what he is thinking!
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