I've just read back through the last two posts and I see it's time to bring you up to speed on the new treatment and how we are doing. Ramsy has been on this study drug for 4 weeks now, and I guess the most accurate thing to say is that we are reserving judgment. He takes the pills every morning on an empty stomach, and so far the side effects have been manageable- only 2 "incidents", as we like to refer to them. We are very thankful for this. There is one other person in Winnipeg taking this drug, and from what our nurse tells us, she has had much rougher going than Ramsy!
As for whether the drug is helping Ramsy at all, we are really not sure. He has felt increased weakness in his right foot/leg, for one thing; his speech continues to come and go according to no pattern that we can see (Chaos Theory, anyone?), but in the last two weeks we have noticed a new "fogginess" about his thoughts. Instead of him being stuck on a word that is right there in his mind and just can't come out, the process of expressing a thought seems to be more like picking up a blob of mercury: the more you try to grab hold of it, the more it scatters into little pieces. (Y'all know I'm old, right? Like, we used glass thermometers with mercury in them when I was little?) It has also been taking him a long time to fully lose the grogginess after he wakes up in the morning or after a nap. Obviously, this has been concerning for us. We mentioned this to his nurse on Friday, thinking that it might be a sign that the tumor is growing. That is a possibility, but the nurse also said that sometimes when a tumor shrinks, there can be rebound swelling, and that could also account for the fog. The first thing we are trying is increasing his steroids (which are used to counteract swelling) to see whether the symptoms respond to that. Boy, do we hope so! To me it seems that the fog is a little less thick today than it was yesterday, but again all we can do is wait and see.
We have been asked by quite a few people, "How do you do it? You always seem so positive." In one way, the answer is: We don't know. We don't feel like we are behaving or thinking in any special way, or "being strong", or anything like that; we are just being ourselves, and also don't know any other way to do it besides just doing the next thing that needs to be done, and finding the good things about being together so much, and enjoying the humor when we can.
In another way, I guess the answer is: God helps us. He gives us peace that does not come from any thing we do, or any attitude that we strive for, or any positive thinking that we maintain. For the first time I am experiencing the fact that this is purely a gift given to us to help us in our great need. He also makes sure that friends, family, and even complete strangers help us. We have been given money, gift cards, food, letters of encouragement, smiles, parking spots, a gorgeously built ramp in the front of our house, and all of these things are reminders for us that He sees us, He knows how completely helpless we are, and He loves us. That's just who He is. How cool to be learning that truth through life experience so that we know it for ourselves, and it isn't just a Sunday School lesson anymore.
Saturday, June 18, 2011
Wednesday, June 8, 2011
Speech therapy
Today I thought I'd describe what Ramsy does at his speech therapy sessions. We go about once a week to see a very sweet speech-language pathologist (also referred to as an SPL) who, although she is very kind, does not let Ramsy off the hook! Her goal is to at least maintain his current speaking abilities, and hopefully to improve them over time. Although the tumor has caused disruptions in Ramsy's expressive language capacities, and the neural pathways that retrieve words don't work anymore, it is possible- through diligent long-term practice- to form new pathways so that his brain will be able to come up with those words more automatically. It's like physiotherapy for the brain instead of muscles.
Some of the things we work on to help him exercise his grey matter include:
Some of the things we work on to help him exercise his grey matter include:
- naming the opposite of a given word (easy!)
- naming a synonym for a given word (harder)
- identifying a common characteristic of items in a list (What do puck, net, and mask have in common? They are all hockey equipment.)
- adding an appropriate item to a list of related items
- listing 5 items in a certain category (Things in a Kitchen, or Restaurants, or Flavours of Chips. This is the most difficult activity for Ramsy because his mind ping-pongs all over the category and has trouble settling on one word.)
We usually have a good laugh at least once per practice session because Ramsy likes to be very creative in his responses. The SPL had no idea what Ramsy was saying when he gave "Jai Alai" as an answer in the Sports category! Or another day he gave me "Hockey, hockey, hockey, hockey and ... hockey!" as his 5 sports. (You may have noticed the hockey theme in this post. We're watching Game 4. Go Canucks!)
Even though we have fun, it's not at all easy for Ramsy to work on this every day. I'm so proud of him. Love looking after him!
Tuesday, May 31, 2011
I want a new drug
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.
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.
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!
Tuesday, April 26, 2011
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