Well, it's been a long time. We had assorted computer issues, and it seemed that every time I decided to update the blog, the computer decided that I wouldn't. Now I have prevailed! (Or at least the computer has not chosen to sulk...)
These last two weeks have been spent getting used to life at home. Ramsy has always been wanting to do more than he is able (and he knows it- he dictated that line to me!) and I am learning when to step in and be bossy about resting and when to keep my mouth shut. The first few days were full with new bathtub/toilet installation, carpet cleaning (thanks, Kevin, for moving furniture :) ), and appointments. He had helpful appointments with the occupational therapist, physiotherapist, and massage therapist. Ramsy thought all the activity was great until Thursday, when he crashed. We have ventured out into group settings a few times and have discovered that although Ramsy enjoys seeing people, the group thing is still overwhelming for his brain. Even sitting in a restaurant with the family exhausts him, I think because of having to filter out all the sounds and activity around him. So for now, we will be very sparing with group settings. Short visits, 15-30 minutes, earlier than 8 pm, still seem to work the best for him.
Our family has really enjoyed the new, much more comfortable tub upstairs. It's great for soaking! (Or sleeping- one family member was discovered bundled in the tub, blankets and all, this morning!) Unfortunately, there was an incident on Saturday where Ramsy's relaxing soak was hijacked by a seizure. It only lasted a short time, but afterwards he was unable to talk for awhile and ended up sitting in the tub for some time waiting for someone to come help him out. We're not sure what caused this seizure- the first one since early December- but we are going for blood tests today to check his medication levels. Back to showers for the next while! Sunday was spent recovering from the seizure-induced fatigue, and today is much better. He is doing dishes as we compose this.
We received a very nice phone call last week telling us that Ramsy has been selected as our little town's Citizen of the Year for 2010! When I told him, he said, "What for? What did I do?" There will be a dinner at the end of February for the 3 chosen citizens (there are also a youth citizen of the year and a lifetime candidate selected) when there will be kind speeches given in their honour and a yummy supper. We have enjoyed attending in other years to see friends honoured, so it's pretty special to be going in the other role this time.
Monday, January 31, 2011
Monday, January 17, 2011
First round completed
We made it! Ramsy finished all 30 radiation treatments with no cancellations due to illness, closed highways, or fatigue! Hooray! He did finish up by getting some kind of stomach bug on Thursday night, so he felt terrible on Friday, but was determined to get to his last treatment. When we got home at noon, he slept for pretty much the rest of the day, and it took him until this morning (Monday) to feel better. He is thrilled to have a break from taking the chemo pills- they were starting to taste pretty gross to him. He is also busy making plans in his head for this week, and next week, and next week.... he's trying to balance things he wants/needs to do with his continued need for rest. We learn as we go, I tell you. (Does anybody read Junie B. Jones?)
True story: I drove Ramsy to Winnipeg for his treatments twice a week, plus to numerous other appointments, as well as driving the kids to most of their lessons and so on, plus errands to Portage- all without accident or mishap. Of course, Saturday night I drove down our alley to park in our driveway as I have done thousands of times, and completely miscalculated my turn. Fencepost, meet van. We have two lovely big scratches down the passenger side of the van. Figures!
So we are now in a waiting period for 4 weeks with no radiation or chemo, so that the healthy tissues in Ramsy's body can recover from the treatment and the swelling around his tumor will go away. His family doctor says that we will likely see more improvement in his symptoms as his body recovers over the next few weeks. At the end of 4 weeks he will have an MRI (which the oncologist says will not really show any improvement, because there will still be swelling there. It will be used as a standard to compare later MRIs to.) and then he will go back on the same chemo pills (temozolomide) on a schedule of 5 days on, 23 days off. We are glad it's a drug that we already know, and that Ramsy had very few side effects with.
We really have to finish off with more thanks to all of you who have been praying, doing errands, giving gifts of money, food, or other things, driving, talking with our kids, sending words of encouragement- we just cannot imagine doing this without you. Thank you, thank you.
True story: I drove Ramsy to Winnipeg for his treatments twice a week, plus to numerous other appointments, as well as driving the kids to most of their lessons and so on, plus errands to Portage- all without accident or mishap. Of course, Saturday night I drove down our alley to park in our driveway as I have done thousands of times, and completely miscalculated my turn. Fencepost, meet van. We have two lovely big scratches down the passenger side of the van. Figures!
So we are now in a waiting period for 4 weeks with no radiation or chemo, so that the healthy tissues in Ramsy's body can recover from the treatment and the swelling around his tumor will go away. His family doctor says that we will likely see more improvement in his symptoms as his body recovers over the next few weeks. At the end of 4 weeks he will have an MRI (which the oncologist says will not really show any improvement, because there will still be swelling there. It will be used as a standard to compare later MRIs to.) and then he will go back on the same chemo pills (temozolomide) on a schedule of 5 days on, 23 days off. We are glad it's a drug that we already know, and that Ramsy had very few side effects with.
We really have to finish off with more thanks to all of you who have been praying, doing errands, giving gifts of money, food, or other things, driving, talking with our kids, sending words of encouragement- we just cannot imagine doing this without you. Thank you, thank you.
Sunday, January 9, 2011
Heading into the last week!
So tomorrow begins the final week of radiation treatments. We met with the oncologist last Friday, and he was pleased with the increased strength in Ramsy's right leg. Ramsy feels that he has about half his normal leg strength now. The doctor is not very hopeful that he'll get the use of his right arm back, considering how weak it is at this point; however, we keep in mind that this is just his best guess.
We all went to church this morning, and it was really good to be there as a family again. Our friend Keith spoke on prayer and led us through some of our own prayers using different psalms as models. (My favourite one, and the one I use most these days is, "Help!") There were some songs interspersed with his message, some easy to sing and some with words that were a bit of a challenge for us at this point. Sometimes I had to skip a line in a song, and sometimes the tears got in the way of the singing, but mostly it felt like the words expressed what we are thinking and feeling all the time. Marv and Darlene also sang a song which has been meaningful to me this fall, and of course made us cry again! Wish we owned shares in Kleenex....
Here are some of the words to the song. It's called "Your Hands" and it's by JJ Heller.
I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away
I am trying to understand
How to walk this weary land
Make straight the paths that crookedly lie
Oh Lord, before these feet of mine
When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands
When You walked upon the Earth
You healed the broken, lost, and hurt
I know You hate to see me cry
One day You will set all things right
Yea, one day You will set all things right
When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands
Your hands that shape the world
Are holding me, they hold me still
That pretty much sums it up.
We all went to church this morning, and it was really good to be there as a family again. Our friend Keith spoke on prayer and led us through some of our own prayers using different psalms as models. (My favourite one, and the one I use most these days is, "Help!") There were some songs interspersed with his message, some easy to sing and some with words that were a bit of a challenge for us at this point. Sometimes I had to skip a line in a song, and sometimes the tears got in the way of the singing, but mostly it felt like the words expressed what we are thinking and feeling all the time. Marv and Darlene also sang a song which has been meaningful to me this fall, and of course made us cry again! Wish we owned shares in Kleenex....
Here are some of the words to the song. It's called "Your Hands" and it's by JJ Heller.
I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away
I am trying to understand
How to walk this weary land
Make straight the paths that crookedly lie
Oh Lord, before these feet of mine
When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands
When You walked upon the Earth
You healed the broken, lost, and hurt
I know You hate to see me cry
One day You will set all things right
Yea, one day You will set all things right
When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands
Your hands that shape the world
Are holding me, they hold me still
That pretty much sums it up.
Monday, January 3, 2011
Two more weeks to go!
Today is the beginning of the second-last week of radiation treatment! We have been very happy to see that Ramsy's symptoms have remained stable for about two weeks now. He is able to walk around the house, to carry on extended conversations, to read and follow instructions for installing a new computer router (well, to follow them better than I can, but not as well as, say, our computer helper friend!). Also, our big excitement today was discovering that he could wiggle the baby finger on his right hand! All of this is very encouraging, as it seems that the radiation is at least shrinking the tumor enough to compensate for whatever swelling has been caused by the radiation. (And it also reminds us that we now live in Bizarro World- three months ago, would we ever have been excited about him moving his pinky?? So strange.)
We are looking forward to him having a month off when the treatments are complete. He is planning some projects for himself: working at his concentration by reading for short periods of time, practicing writing with his left hand, and so on. Things that will help him, but not wear him out. (He declines to scrapbook.) :)
We are looking forward to him having a month off when the treatments are complete. He is planning some projects for himself: working at his concentration by reading for short periods of time, practicing writing with his left hand, and so on. Things that will help him, but not wear him out. (He declines to scrapbook.) :)
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