I seem to be talking a lot about Kurtis lately. Don't worry - more about Ryan will definitely follow!
Today is the Terry Fox Run at Kurtis's school (well, it's actually a short walk but it's the thought that counts). Instead of asking people for pledges, the children are asked to bring in a loonie or a toonie ($1 coin or $2 coin for those of you outside Canada). So I dug out my wallet last night to get each of my boys a toonie. Kurtis told me "No, I want to use my own money". I told him he didn't have to pay out of his own allowance, I would give him the money. But no, he insisted and after debating back and forth for a short while, I let him take the money out of his allowance. He reached in and grabbed $3..... He said he wanted to give a lot of money so they can do a lot of cancer research. I couldn't help but start crying...and told my little man how proud of him I was.
Friday, September 29, 2006
45 Years!!
HAPPY 45th WEDDING ANNIVERSARY to my Mom and Dad!
Today is the day they were married, 45 years ago. We celebrated their anniversary last weekend with them but I didn't want to forget them on this very special day.
We are so thankful that you can celebrate 45 years of marriage. Through the good times and bad, you have always been there for each other. You have been an amazing model for me to follow and to aspire to.
We love you very very much Mom and Dad! Have a wonderful day!
Today is the day they were married, 45 years ago. We celebrated their anniversary last weekend with them but I didn't want to forget them on this very special day.
We are so thankful that you can celebrate 45 years of marriage. Through the good times and bad, you have always been there for each other. You have been an amazing model for me to follow and to aspire to.
We love you very very much Mom and Dad! Have a wonderful day!
Wednesday, September 27, 2006
My chemo holiday ends today
I start my new treatment protocol tomorrow morning. This chemo is on a 3 week cycle as well. It's administered over 24 hours, but the good news is that I don't have to stay in the hospital. Instead, they hook me up to a pump and I can go home almost immediately. Home Care will come on Friday to disconnect me. This chemo has fairly minimal side effects - they're pretty much the same as the last chemo and again, I'm happy because apparently the nausea is pretty minimal with this one. I do have to go to Toronto to get this chemo - thank goodness for supportive friends and family!
Please keep me in you prayers tomorrow. I'm a bit anxious about this. It's been a while since I've had chemo. My hair is growing back (although there is a very good chance I won't lose what little I have) and my energy is returning. I'm dreading the low energy, the low blood counts (and watching for infections and being wary of crowds) and the general feeling of "yuckiness" that you get when you go through chemo.
Please keep me in you prayers tomorrow. I'm a bit anxious about this. It's been a while since I've had chemo. My hair is growing back (although there is a very good chance I won't lose what little I have) and my energy is returning. I'm dreading the low energy, the low blood counts (and watching for infections and being wary of crowds) and the general feeling of "yuckiness" that you get when you go through chemo.
A great article about my friend Nicole and her daughter, Tarenne
I met Nicole on-line when Ryan was born and have had the pleasure of meeting her twice in real life. Tarenne is an adorable little girl and they did a great article about them! Check it out...
Wednesday, September 20, 2006
What a great big brother!
Sometimes I really wonder about my kids - especially when my 7-year old is going through major attitude and my 5 year-old thinks listening to his parents (or any other authority figure) is optional. But then...every now and then your children say or do something that makes you realize all that teaching is paying off!
Last week, Kurtis couldn't sleep so he came to snuggle in bed with me. I was watching CSI or something else totally inappropriate for a 7 year old and quickly switched the channel. It turned out to be Supernanny. For some reason, this show got his attention and he wanted to watch it (and I admit, I watch it in between commercials of my other show as well). The children in this particular episode were horrible. Hitting, yelling, swearing.... Kurtis couldn't believe it and he made a comment something along the lines of .."we're not nearly that bad, are we?" I told him that Ryan and him were good kids - kids who just misbehaved sometimes. We talked for a bit about those kids and behaviour... I was amazed at his comments and how we were having a chat about this! Then I said something about how Ryan has been misbehaving a lot lately and how he has been hitting and not listening to what is asked of him. Kurtis's response blew me away: "but Mom, Ryan has Down syndrome... and that means it takes him longer to learn. So maybe it's just taking him longer to learn good behaviour". Not only is he defending his younger brother to me, he's also realizing why Ryan sometimes behaves the way he does. He's a very insightful boy, that kid of mine.
Last week, Kurtis couldn't sleep so he came to snuggle in bed with me. I was watching CSI or something else totally inappropriate for a 7 year old and quickly switched the channel. It turned out to be Supernanny. For some reason, this show got his attention and he wanted to watch it (and I admit, I watch it in between commercials of my other show as well). The children in this particular episode were horrible. Hitting, yelling, swearing.... Kurtis couldn't believe it and he made a comment something along the lines of .."we're not nearly that bad, are we?" I told him that Ryan and him were good kids - kids who just misbehaved sometimes. We talked for a bit about those kids and behaviour... I was amazed at his comments and how we were having a chat about this! Then I said something about how Ryan has been misbehaving a lot lately and how he has been hitting and not listening to what is asked of him. Kurtis's response blew me away: "but Mom, Ryan has Down syndrome... and that means it takes him longer to learn. So maybe it's just taking him longer to learn good behaviour". Not only is he defending his younger brother to me, he's also realizing why Ryan sometimes behaves the way he does. He's a very insightful boy, that kid of mine.
Wednesday, September 13, 2006
Summer 2006
Here are some other pictures from this past summer.
RibFest - our family tradition
Our visit to the ROM (Royal Ontario Museum)
Kurtis being a Knight at the ROM
Kurtis's Rabbit Catcher. Our neighbours received 2 rabbits from their grandparents - unfortunately, they kept escaping from their hatch. The kids spent hours and hours catching (and re-catching) these bunnies. We did have an actual trap, but Kurtis had fun devising this one. His creativity never fails to amaze me.
Kathy and the boys
Ryan learned to swing all on his own this summer:
Pouty boy
I let Ryan eat his grilled cheese in front of the TV one day. Well, he decided he didn't have enough ketchup (he NEVER has enough ketchup) and went and got himself some more. Where was I in all of this?? Posting on my blog! :)
Tom and the boys
RibFest - our family tradition
Our visit to the ROM (Royal Ontario Museum)
Kurtis being a Knight at the ROM
Kurtis's Rabbit Catcher. Our neighbours received 2 rabbits from their grandparents - unfortunately, they kept escaping from their hatch. The kids spent hours and hours catching (and re-catching) these bunnies. We did have an actual trap, but Kurtis had fun devising this one. His creativity never fails to amaze me.
Kathy and the boys
Ryan learned to swing all on his own this summer:
Pouty boy
I let Ryan eat his grilled cheese in front of the TV one day. Well, he decided he didn't have enough ketchup (he NEVER has enough ketchup) and went and got himself some more. Where was I in all of this?? Posting on my blog! :)
Tom and the boys
Tuesday, September 12, 2006
What's on my mind today
Nothing really... no new insights on the human condition... nothing new on the quantum physics front... In fact, it's something everybody already knows! What's on my mind today is music.
I've done a lot of driving over the past few days and have been enjoying listening to the music on my iPod. And it struck me how amazing music is. It makes us laugh and cry. It can teach and inspire. Music can be bubblegum fluff songs that have a good beat and just make you happy. It can bring you to tears over the tragedy the story tells. Music can make us want to dance. It can make us want to praise God. It creates memories like no other vehicle, in my humble opinion. Art and poetry just doesn't do it for me like music does. This is what really got me thinking.
My thinking started last week when I received a package in the mail. It was from a dear old friend from high school. She had sent me a CD of Modern English which had the song "I Melt with You" on it. My friend and I have recently reconnected and I told her how, over the years, every time I heard that song on the radio, I thought of her. And in particular, I was reminded of our Grade 12 trip to Quebec City. So I was very pleasantly surprised when I received this CD - it brought back so many memories.
So as I've been putting the miles on my car, I started thinking of all the songs that bring back memories for me. I thought I'd share just a few of the oddball memories that popped into my head:
- driving to and from my co-op job one hot summer in my 1978 (?) Pontiac Sunbird... I listened to Bruce Cockburn and Elvis Costello there and back... and over and over again. I can't hear either one of them without being transported back to that road and that car.
- Terence Trent D'Arby (remember this guy?) - I bought a tape (what I realize now was a pirated version) at a market stall in Turkey when I travelled through Europe. I also am reminded of various places throughout Europe when I listen to Eurythmics and Sting. Who needs pictures of the Notre Dame when you have music to bring pictures to your mind?
- I travelled through the Rockies when visiting my cousin in Alberta. I couldn't get any radio stations and the car I rented didn't have a CD player. So I bought one tape (Eric Clapton - Unplugged) and I listened to it probably 100 times. I can't hear a single song on that album without picturing the beautiful mountains in front of me... with gorgeous clear blue lakes beside me.
- The Statler Brothers (see my list below). My parents played the Statler Brothers a lot and the album on my list is one of theirs. It's not available on CD or vinyl anymore (I've checked). I grew up listening to this album and I still love it. Their version of "How Great Thou Art" will forever be the version to compare to. And I still listen to this regularly and am immediately brought back to sitting in front of the 3 foot high speakers in my parents living room, singing along with them.
I think that's why many people love listening to the songs that they listened to when they were teenagers. So much teenage angst and emotion... so much fun with friends....so many memories being created.... All those songs (horrible as they may be - I was a teenager throughout the 80's so enough said) bring back memories from that time.
Since my children have been born, I haven't listened to "my" music nearly enough. We listen to Raffi, Barney (ugh), Sharon Lois & Bram and Laurie Berkner to name a few. But I hope to create good childhood memories for my children with music. I hope they remember listening to Raffi as we drove down to African Lion Safari (I do!). I hope they remember dancing in the dining room with Mom as we listened to our Signing Time CDs. I hope they remember falling asleep to Sunday School Songs on their tape player.
Finally, here's a list of my favourite albums. These are in no particular order. And they are not necessarily my favourite artists. These are albums I can listen to over and over again and not skip a single song on the album.
1. Tapestry by Carole King
2. Famous Blue Raincoat by Jennifer Warnes
3. Graceland by Paul Simon
4. Self titled album by the Indigo Girls
5. How Great Thou Art by the Statler Brothers
There's a song by ABBA that says it well, although it is a bit corny. (Just as an aside, ABBA is my all-time favourite band, and yes, Tom still loves me despite this little quirk). In their song "Thank you for the music" they say,
...."And I've often wondered, how did it all start. Who found that nothing can capture a heart like a melody can? Well, whoever it was, I'm a fan".
I've done a lot of driving over the past few days and have been enjoying listening to the music on my iPod. And it struck me how amazing music is. It makes us laugh and cry. It can teach and inspire. Music can be bubblegum fluff songs that have a good beat and just make you happy. It can bring you to tears over the tragedy the story tells. Music can make us want to dance. It can make us want to praise God. It creates memories like no other vehicle, in my humble opinion. Art and poetry just doesn't do it for me like music does. This is what really got me thinking.
My thinking started last week when I received a package in the mail. It was from a dear old friend from high school. She had sent me a CD of Modern English which had the song "I Melt with You" on it. My friend and I have recently reconnected and I told her how, over the years, every time I heard that song on the radio, I thought of her. And in particular, I was reminded of our Grade 12 trip to Quebec City. So I was very pleasantly surprised when I received this CD - it brought back so many memories.
So as I've been putting the miles on my car, I started thinking of all the songs that bring back memories for me. I thought I'd share just a few of the oddball memories that popped into my head:
- driving to and from my co-op job one hot summer in my 1978 (?) Pontiac Sunbird... I listened to Bruce Cockburn and Elvis Costello there and back... and over and over again. I can't hear either one of them without being transported back to that road and that car.
- Terence Trent D'Arby (remember this guy?) - I bought a tape (what I realize now was a pirated version) at a market stall in Turkey when I travelled through Europe. I also am reminded of various places throughout Europe when I listen to Eurythmics and Sting. Who needs pictures of the Notre Dame when you have music to bring pictures to your mind?
- I travelled through the Rockies when visiting my cousin in Alberta. I couldn't get any radio stations and the car I rented didn't have a CD player. So I bought one tape (Eric Clapton - Unplugged) and I listened to it probably 100 times. I can't hear a single song on that album without picturing the beautiful mountains in front of me... with gorgeous clear blue lakes beside me.
- The Statler Brothers (see my list below). My parents played the Statler Brothers a lot and the album on my list is one of theirs. It's not available on CD or vinyl anymore (I've checked). I grew up listening to this album and I still love it. Their version of "How Great Thou Art" will forever be the version to compare to. And I still listen to this regularly and am immediately brought back to sitting in front of the 3 foot high speakers in my parents living room, singing along with them.
I think that's why many people love listening to the songs that they listened to when they were teenagers. So much teenage angst and emotion... so much fun with friends....so many memories being created.... All those songs (horrible as they may be - I was a teenager throughout the 80's so enough said) bring back memories from that time.
Since my children have been born, I haven't listened to "my" music nearly enough. We listen to Raffi, Barney (ugh), Sharon Lois & Bram and Laurie Berkner to name a few. But I hope to create good childhood memories for my children with music. I hope they remember listening to Raffi as we drove down to African Lion Safari (I do!). I hope they remember dancing in the dining room with Mom as we listened to our Signing Time CDs. I hope they remember falling asleep to Sunday School Songs on their tape player.
Finally, here's a list of my favourite albums. These are in no particular order. And they are not necessarily my favourite artists. These are albums I can listen to over and over again and not skip a single song on the album.
1. Tapestry by Carole King
2. Famous Blue Raincoat by Jennifer Warnes
3. Graceland by Paul Simon
4. Self titled album by the Indigo Girls
5. How Great Thou Art by the Statler Brothers
There's a song by ABBA that says it well, although it is a bit corny. (Just as an aside, ABBA is my all-time favourite band, and yes, Tom still loves me despite this little quirk). In their song "Thank you for the music" they say,
...."And I've often wondered, how did it all start. Who found that nothing can capture a heart like a melody can? Well, whoever it was, I'm a fan".
Saturday, September 09, 2006
Our game plan
We saw "the sarcoma expert" at Mount Sinai in Toronto this past week. He's not yet convinced that we need to stop the chemotherapy I was just on. Of course he didn't receive copies of my CT scans so he doesn't know for sure (as he's just going by what the doctor wrote when she asked him to see me). I'm getting the CT scans to him on Monday so he can figure out if Plan B is still a viable option for me. If that isn't possible, then we do have a Plan C - a clinical trial drug. This isn't a totally new, experimental trial. There are no placebos - everybody who is in the trial receives the drug. They've already figured out dosages and schedules for administration. The side effects are similar to most chemotherapies and the good news (for me) is that nausea is again minimal.
The one thing I can't do while on this drug is take the i.v. vitamin C therapy. It's going to be an either-or situation. I'm very disappointed in this, but I do understand why. There are some concerns that the vitamin C may interfere with the chemo. AND,,, if we do see some successes, they wouldn't know what to attribute them to - vitamin C or chemo? Right now our decision is to stick with conventional chemotherapy.
That's all for now! I'm feeling more energetic than I have in weeks and I'm off tonight to enjoy some lobster at Lobsterfest!
The one thing I can't do while on this drug is take the i.v. vitamin C therapy. It's going to be an either-or situation. I'm very disappointed in this, but I do understand why. There are some concerns that the vitamin C may interfere with the chemo. AND,,, if we do see some successes, they wouldn't know what to attribute them to - vitamin C or chemo? Right now our decision is to stick with conventional chemotherapy.
That's all for now! I'm feeling more energetic than I have in weeks and I'm off tonight to enjoy some lobster at Lobsterfest!
Tuesday, September 05, 2006
First Day of School
Such mixed emotions today... happy because the kids are going back (yes, I will miss them, but it's good to get back to structured days).... worried as I didn't know who their teachers were or who Ryan's aide was. I was prepared to stay with Ryan for the morning because I couldn't see dropping my child off with a teacher or aide who didn't know Ryan. The odds were that I would at least know who the aide is because there's only a few at Ryan's school and they all know him - but if it was someone who had never worked with Ryan before, I wanted to stay there to help Ryan through the morning. And the teacher was brand new to the school as she is just filling in for mat leave for the regular teacher (who we LOVE and who told me two years ago when Kurtis was in her class that she couldn't wait to teach Ryan). BUT, in the end, Ryan has the same aide as last year! We're thrilled about that! His aide is a bit overprotective of Ryan - and we'll continue to work on that - but she is AMAZING with developing his reading and fine motor skills. So, overall, it was an easy morning for Ryan.
Kurtis found his class with a little bit of help too. He's happy with his teacher and he has some of his old friends back in his class. There's 1.5 classes in his grade so there is always one split class and they switch them around regularly so he's getting to know everyone in that grade.
Here are my boys on their first day of school. Ryan had a bit of a fall yesterday and scraped the whole side of his face and neck - poor kid!
Kurtis found his class with a little bit of help too. He's happy with his teacher and he has some of his old friends back in his class. There's 1.5 classes in his grade so there is always one split class and they switch them around regularly so he's getting to know everyone in that grade.
Here are my boys on their first day of school. Ryan had a bit of a fall yesterday and scraped the whole side of his face and neck - poor kid!
An apology from Q92
This one seems more heartfelt. I still don't think "Igor" gets it - and he probably never will.
Contact: Don Peterson, III
General Manager: WZKL/WDPN Radio
Station Apologizes for Radio Bit
ALLIANCE, STARK COUNTY, OHIO - September 1, 2006. Q92 Radio in the Canton, OH radio market has formally apologized for a contest “bit” called “Name that Tune with Mongoloid Mike”. The bit had a character voice lyrics to a popular song as if sung by a person of special needs. Listeners were invited to call in to “Name that Tune”.
“I apologize for the behavior of my on-air staff. The ‘bit’ that occurred was wrong and I am VERY sorry. It is reprehensible and will never happen again. My sincerest apology to ARC of Stark and all ARC affiliates worldwide. I would also like to apologize to the employees of the Stark MRDD, friends and associates. Also, to anyone directly or indirectly associated with anyone with a disability,” said Don Peterson, III, General Manager of the station.
Peterson continued, “We (Q92) aired an apology beginning at 7p Wednesday (8/30) evening that ran every hour and all day on Thursday. An apology appears on our web site www.q92radio.com and the DJ that aired the bit has been suspended and his pay scale has been adjusted accordingly.”
“Igor (the DJ airing the bit) is a very talented and valued employee, but this segment crossed the line. He is young and his future is bright. I know Igor has learned a very valuable lesson and obviously the segment will no longer be aired by the station,” said John Stewart, Program Director for the station.
“Plans have been put in place to partner with the Stark MRDD to better educate our listeners of the gifts people with disabilities have and how they contribute to our society. I am looking forward to that opportunity and on behalf of the station and our staff, I am sorry for any harm that came out of our broadcast facility,” Peterson concluded.
Contact: Don Peterson, III
General Manager: WZKL/WDPN Radio
Station Apologizes for Radio Bit
ALLIANCE, STARK COUNTY, OHIO - September 1, 2006. Q92 Radio in the Canton, OH radio market has formally apologized for a contest “bit” called “Name that Tune with Mongoloid Mike”. The bit had a character voice lyrics to a popular song as if sung by a person of special needs. Listeners were invited to call in to “Name that Tune”.
“I apologize for the behavior of my on-air staff. The ‘bit’ that occurred was wrong and I am VERY sorry. It is reprehensible and will never happen again. My sincerest apology to ARC of Stark and all ARC affiliates worldwide. I would also like to apologize to the employees of the Stark MRDD, friends and associates. Also, to anyone directly or indirectly associated with anyone with a disability,” said Don Peterson, III, General Manager of the station.
Peterson continued, “We (Q92) aired an apology beginning at 7p Wednesday (8/30) evening that ran every hour and all day on Thursday. An apology appears on our web site www.q92radio.com and the DJ that aired the bit has been suspended and his pay scale has been adjusted accordingly.”
“Igor (the DJ airing the bit) is a very talented and valued employee, but this segment crossed the line. He is young and his future is bright. I know Igor has learned a very valuable lesson and obviously the segment will no longer be aired by the station,” said John Stewart, Program Director for the station.
“Plans have been put in place to partner with the Stark MRDD to better educate our listeners of the gifts people with disabilities have and how they contribute to our society. I am looking forward to that opportunity and on behalf of the station and our staff, I am sorry for any harm that came out of our broadcast facility,” Peterson concluded.
Wednesday, August 30, 2006
Ugh... "Mongoloid Mike" - this is unbelievable
A radio station outside Canton, Ohio (Q92.5 FM) is doing a regular contest called, "Mongoloid Mike". The DJ has an individual sing a song as if he has mental retardation and then asks listeners to guess what the "Mongoloid" is singing. If you guess the correct song, you win a prize! Apparently this has been airing for some time now, but only recently has the "developmental delay community" been made aware of it. In the past week, some people have written/emailed/called the station itself but the station didn't seem to care. In fact, the DJs thought that some of the calls and mail were funny. ARC of Ohio also reports that when they responded to the station with a complaint, the DJ told listeners to call the ARC and interrupt their business because they are a bunch of "nut cases".
However, as more and more people complained, and went to their sponsors and complained, the station took notice. The good news: after a blitz by concerned parents and organizations, the radio station indicated it will be taking the segment off the air and will be issuing an on-air apology today. However, if the on-air apology is anything like the on-line apology, I'm not too hopeful. In any event, this nasty piece is off the air.
The on-line apology can be found at: http://www.q92radio.com/ This apology just has a very hollow feel to it... it almost seems like one of those apologies that start "I'm sorry if you feel that way"... it's no apology at all! "We'd like to apologize for any harm done" - no apology for "we did the wrong thing" or "we were insensitive jerks".... "It has been pointed out to us that this is not the proper forum" - ummm... so what IS the proper forum? I'd like to know exactly where is the right place to go to hear jokes like this.
I am so horrified that this kind of stuff still happens - but not really surprised. Jokes about people who are mentally retarded still happen regularly. Just watch the Comedy Network for a short while and eventually you'll see someone making fun of the intellectually challenged. This was just so blatant though.... so obviously designed to make fun of people with developmental disabilities. What concerns me is that the people at the station, particularly the DJ, don't see what's wrong with this. People would "get it" right away if it was a racial slur... call in and pretend to be of African descent.. we could call it "N**ger Name That Tune". But they don't see it the same. And that is very sad.
However, as more and more people complained, and went to their sponsors and complained, the station took notice. The good news: after a blitz by concerned parents and organizations, the radio station indicated it will be taking the segment off the air and will be issuing an on-air apology today. However, if the on-air apology is anything like the on-line apology, I'm not too hopeful. In any event, this nasty piece is off the air.
The on-line apology can be found at: http://www.q92radio.com/ This apology just has a very hollow feel to it... it almost seems like one of those apologies that start "I'm sorry if you feel that way"... it's no apology at all! "We'd like to apologize for any harm done" - no apology for "we did the wrong thing" or "we were insensitive jerks".... "It has been pointed out to us that this is not the proper forum" - ummm... so what IS the proper forum? I'd like to know exactly where is the right place to go to hear jokes like this.
I am so horrified that this kind of stuff still happens - but not really surprised. Jokes about people who are mentally retarded still happen regularly. Just watch the Comedy Network for a short while and eventually you'll see someone making fun of the intellectually challenged. This was just so blatant though.... so obviously designed to make fun of people with developmental disabilities. What concerns me is that the people at the station, particularly the DJ, don't see what's wrong with this. People would "get it" right away if it was a racial slur... call in and pretend to be of African descent.. we could call it "N**ger Name That Tune". But they don't see it the same. And that is very sad.
Sunday, August 27, 2006
20/20 Segment on Carrie and Sujeet's wedding
http://abcnews.go.com/2020/Video/Video/videoPlaylist?id=2358933&start=bW9tZTIza2puY0BhZGVscGhpYS5uZXQ=&end=Zm9yZXZlcg==
This couple is truly inspirational. I'm also very impressed with 20/20 - they did a great job on this segment.
This couple is truly inspirational. I'm also very impressed with 20/20 - they did a great job on this segment.
Friday, August 25, 2006
The light is returning
I'm feeling a bit better today - emotionally and physically. I've had some time to process this news and deal with it. I think one of the hardest things is waiting for the next steps. Not having a game plan in place when we heard the news made it worse as there didn't seem to be anywhere to go. But, we WILL have something in place. There are other options.
I have also been incredibly encouraged by the support of people who've emailed, posted on my blog, called, dropped off a book or cookies (I have a wonderful cookie fairy who delivers fairly regularly). Your support means the world to me. Even if you don't know what to say, and honestly, I totally understand how hard it is, just the fact that you're thinking and praying for me lifts me up.
I also met with my Pastor and his wife yesterday and was greatly encouraged by their wisdom and honesty.
Please continue to pray for healing, wisdom for the doctors as we map out a game plan, for strength for Tom and me, and for the gift of being able to find enjoyment in every day.
I have also been incredibly encouraged by the support of people who've emailed, posted on my blog, called, dropped off a book or cookies (I have a wonderful cookie fairy who delivers fairly regularly). Your support means the world to me. Even if you don't know what to say, and honestly, I totally understand how hard it is, just the fact that you're thinking and praying for me lifts me up.
I also met with my Pastor and his wife yesterday and was greatly encouraged by their wisdom and honesty.
Please continue to pray for healing, wisdom for the doctors as we map out a game plan, for strength for Tom and me, and for the gift of being able to find enjoyment in every day.
Tuesday, August 22, 2006
I wasn't sure how to title this post... so I left it blank. How to summarize in two words how I'm feeling right now? Just can't do it.
We found out the results of the CT scan I had done last week, and again, they weren't good. The tumors have not shrunk at all. Nada... nothing. And the cough I developed last week isn't due to a cold or asthma, it's because of fluid building up in my lung again.
So Plan B is done too. My doctors here are going to contact the expert again at Mount Sinai to figure out next steps. Right now, I don't know what that will be... perhaps another type of chemo or perhaps participation in a clinical trial (new chemos). My regular oncologist was on holidays so we had a different one and she's not a sarcoma expert and hadn't checked with the Mount Sinai doc before. Hopefully she'll be able to contact him this week so we can figure out what we do next.
On a more positive note, the tumors haven't grown. This may be due to the chemo keeping them in check or it may be because the tumors are incredibly slow growing. We don't right now which one it is.. but I guess we'll find out once we stop chemo for a bit. I pray it's the second actually as that gives us more time to find something that will work.
Since it seems that conventional medicine is failing me right now, I'm looking towards unconventional options. I'll be starting intravenous vitamin C therapy in the next week or so with a naturopathic doctor in Toronto. The Canadian Medical Association Journal published an article recently about some successes with i.v vitamin C. Of course, there is no guarantee - but then there was no guarantee with chemo either. And the good thing is that there is no down side - no negative side effects. Even if it doesn't reduce the tumors, the benefits of increased energy and a decrease in pain will make it worthwhile for me.
It's been a very very tough couple of days. When I decided to do this blog, I promised myself that I would be honest. That isn't to say that I would hang everything out there - it is the internet after all and not everyone needs to know ALL the details. But I said that I would be honest with what I'm going through and generally, what I'm feeling. So... here it is...this is the toughest thing I've ever been through. I'm feeling hopeless and scared stiff. Take it one day at a time as my sister reminded me. Right now that's all I can do. I wish I had some fitting Bible passage or a quote from a book or devotion that expressed everything I'm feeling right now. I've never been good at recalling quotes from any source (I can't even tell jokes properly :) ) I know I've read many inspirational things over the past 8 months, but right now I'm drawing a total blank. The only thing that comes to mind is the well known Psalm 23: "Even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me." No matter what the future holds, I know that God is with me and is holding me close.
We found out the results of the CT scan I had done last week, and again, they weren't good. The tumors have not shrunk at all. Nada... nothing. And the cough I developed last week isn't due to a cold or asthma, it's because of fluid building up in my lung again.
So Plan B is done too. My doctors here are going to contact the expert again at Mount Sinai to figure out next steps. Right now, I don't know what that will be... perhaps another type of chemo or perhaps participation in a clinical trial (new chemos). My regular oncologist was on holidays so we had a different one and she's not a sarcoma expert and hadn't checked with the Mount Sinai doc before. Hopefully she'll be able to contact him this week so we can figure out what we do next.
On a more positive note, the tumors haven't grown. This may be due to the chemo keeping them in check or it may be because the tumors are incredibly slow growing. We don't right now which one it is.. but I guess we'll find out once we stop chemo for a bit. I pray it's the second actually as that gives us more time to find something that will work.
Since it seems that conventional medicine is failing me right now, I'm looking towards unconventional options. I'll be starting intravenous vitamin C therapy in the next week or so with a naturopathic doctor in Toronto. The Canadian Medical Association Journal published an article recently about some successes with i.v vitamin C. Of course, there is no guarantee - but then there was no guarantee with chemo either. And the good thing is that there is no down side - no negative side effects. Even if it doesn't reduce the tumors, the benefits of increased energy and a decrease in pain will make it worthwhile for me.
It's been a very very tough couple of days. When I decided to do this blog, I promised myself that I would be honest. That isn't to say that I would hang everything out there - it is the internet after all and not everyone needs to know ALL the details. But I said that I would be honest with what I'm going through and generally, what I'm feeling. So... here it is...this is the toughest thing I've ever been through. I'm feeling hopeless and scared stiff. Take it one day at a time as my sister reminded me. Right now that's all I can do. I wish I had some fitting Bible passage or a quote from a book or devotion that expressed everything I'm feeling right now. I've never been good at recalling quotes from any source (I can't even tell jokes properly :) ) I know I've read many inspirational things over the past 8 months, but right now I'm drawing a total blank. The only thing that comes to mind is the well known Psalm 23: "Even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me." No matter what the future holds, I know that God is with me and is holding me close.
Sunday, August 20, 2006
Back to real life
We had a good remainder of the week. The weather was warm and the kids had a blast boating, swimming and playing.
Have I written about my sister lately? :) She is one amazing woman and I am SO lucky to have her as my sister and friend. She was so helpful during the week...helping to get things for me, watching over Ryan, including Mom and Dad in their meals. Lisa, I hope you got a chance to rest on Sunday! You really are the best!!
Tom was no slouch either - he was quite busy this week with the kids (although he did also manage to get 2 rounds of golf in) and kept Ryan busy in the swing and in the water. Tom, thanks for all you did to help the kids have a great week.
I didn't do a lot this week... fed some kids, read a few books, made a few meals (but thanks to my mother-in-law and Lisa, most of them were already pre-prepared), played in the water a bit and slept a lot. I was quite tired this week and had a good nap every afternoon. Ryan was quite tired too - I'm sure all the activity wore him out, so we were both quite happy to have that afternoon nap.
We were so happy, also, that Mom was able to come this week too. She is feeling better since she started on a strict new diet and was taken off another medication. And her dialysis is on hold right now because the diet has improved her bloodwork - thank goodness for small miracles.
I ended up having to go to the emergency department of the local hospital on Wednesday night. I had developed a fever and it hit the magic number for the required 1 hour so I had to go in. I had also developed a slight cough and that worried me. Thankfully after checking my bloodwork, I was able to go home with a prescription for "the big gun" oral antibiotics and an asthma inhaler. This was much better than the other alternative - getting the "super big gun" antibiotic by i.v. and having to come back every 8 hours for it! The fever never returned but I am using the inhaler regularly. I think I just started to catch a cold and my usually mild asthma that I get when i get a cold was a bit more aggressive this time.
Here are some pictures from our week:
Kurtis playing with the tether ball game I had purchased. It was a hit with all the kids at the cottage
Have I written about my sister lately? :) She is one amazing woman and I am SO lucky to have her as my sister and friend. She was so helpful during the week...helping to get things for me, watching over Ryan, including Mom and Dad in their meals. Lisa, I hope you got a chance to rest on Sunday! You really are the best!!
Tom was no slouch either - he was quite busy this week with the kids (although he did also manage to get 2 rounds of golf in) and kept Ryan busy in the swing and in the water. Tom, thanks for all you did to help the kids have a great week.
I didn't do a lot this week... fed some kids, read a few books, made a few meals (but thanks to my mother-in-law and Lisa, most of them were already pre-prepared), played in the water a bit and slept a lot. I was quite tired this week and had a good nap every afternoon. Ryan was quite tired too - I'm sure all the activity wore him out, so we were both quite happy to have that afternoon nap.
We were so happy, also, that Mom was able to come this week too. She is feeling better since she started on a strict new diet and was taken off another medication. And her dialysis is on hold right now because the diet has improved her bloodwork - thank goodness for small miracles.
I ended up having to go to the emergency department of the local hospital on Wednesday night. I had developed a fever and it hit the magic number for the required 1 hour so I had to go in. I had also developed a slight cough and that worried me. Thankfully after checking my bloodwork, I was able to go home with a prescription for "the big gun" oral antibiotics and an asthma inhaler. This was much better than the other alternative - getting the "super big gun" antibiotic by i.v. and having to come back every 8 hours for it! The fever never returned but I am using the inhaler regularly. I think I just started to catch a cold and my usually mild asthma that I get when i get a cold was a bit more aggressive this time.
Here are some pictures from our week:
Kurtis playing with the tether ball game I had purchased. It was a hit with all the kids at the cottage
Me, Ryan and my nephew Connor going for a boat ride.
Kurtis and Sara on the boat.
Kurtis learning to kayak
Kurtis, Sara and Ryan hamming it up
Ryan looovves the sand!
Wednesday, August 16, 2006
Cottage Life
Well, first of all, according to Tom, I need to stop calling it a cottage... it's a cabin. I guess it is more of a cabin then a cottage, depending on your definition. The picture on the left was taken with my new cell phone (cool, huh?).
We rent a cottage..oops cabin.. for one week a year. My sister and her family rent one too and my parents come up with their camper. It's a great location for kids... a nice lake, a large sandy area to play in, ping pong table, swings, shuffle board, horseshoes and a volleyball court. The reason the adults love it so much is because the kids keep themselves busy from morning to night.
The past few days have been rainy and cold...today is chilly, but at least it's not rainy! Tom and my brother-in-law took the kids on a candy tour yesterday to kill some time.... out for lunch in one town, have an ice cream in another town and finally a stop at The Candy Store in another town. Needless to say, the kids were a bit wired last night! In the meantime, my mom, my sister and I enjoyed a nice lunch out.
We rented a small fishing boat today so the kids are happy going out for boat rides today. They haven't caught many fish yet, but that doesn't seem to bother them. The sun finally seems to be peeking out so hopefully we'll all be able to go swimming this afternoon.
oh..by the way... I never did buy that speaker set for my iPod. I did look on-line, but they were a bit pricey for me.
Friday, August 11, 2006
Spendy girl
I know EXACTLY what I'm doing....but does that stop me?? I have had the biggest urge lately to SHOP... to buy things. I don't know exactly what I want, but I want something. It's superficial, materialistic and only lasts a short while, but for that short while, it makes me happy. Yup, I am compensating for this cancer crap. I feel bad for the kids that I can't do much with them so I buy them stuff. Today I bought them a video (well, I think it's probably more for me... The Princess Bride is one of my favourite movies of all time and I want to share it with them). Yesterday I bought them a tether ball type game to bring to the cottage. The day before I bought them an educational game. Ryan had a gift certificate for the toy store and I bought Fun Thinkers for him and Kurtis enjoyed it so much, I went back and got the correct age level book for him. I buy them food I would never otherwise let them have. Kurtis got a pair of Crocs that he really doesn't need.
As for me? I've been feeling a little bit down the past two weeks. I know most of it is because I am exhausted and when my body is exhausted, my emotional state isn't always the best. I needed to get a new phone yesterday as a little boy, who found the phone sitting beside the sink, thought it needed a wash along with the dishes. Instead of buying the cheapest phone in the store, which I would normally do as I don't use my cell phone very much at all, I instead bought a slightly upgraded version... it's pink and has a camera! Today I bought an adaptor for the car so I can use my iPod in the car. I bought myself some new sunglasses. I've bought myself two paperback books in the past week. I bought myself a pair of Crocs as well... as if I need another pair of summer shoes. For someone who says she's exhausted, I seem to be doing a good job of getting out shopping, don't I? I'm just a very quick shopper.
Intellectually I know exactly what I'm doing and I know this isn't good for the long term. But I gotta admit,,, it's a bit fun to spend money on some toys! They're not huge purchases I know... they're not going to break the bank, but it's something I'm very conscious of as I don't like to buy stuff "just because". In the meantime, the kids are loving it! :)
And maybe I'll just go out and get a speaker set to go with the iPod so we can have some music up at the cottage.....
As for me? I've been feeling a little bit down the past two weeks. I know most of it is because I am exhausted and when my body is exhausted, my emotional state isn't always the best. I needed to get a new phone yesterday as a little boy, who found the phone sitting beside the sink, thought it needed a wash along with the dishes. Instead of buying the cheapest phone in the store, which I would normally do as I don't use my cell phone very much at all, I instead bought a slightly upgraded version... it's pink and has a camera! Today I bought an adaptor for the car so I can use my iPod in the car. I bought myself some new sunglasses. I've bought myself two paperback books in the past week. I bought myself a pair of Crocs as well... as if I need another pair of summer shoes. For someone who says she's exhausted, I seem to be doing a good job of getting out shopping, don't I? I'm just a very quick shopper.
Intellectually I know exactly what I'm doing and I know this isn't good for the long term. But I gotta admit,,, it's a bit fun to spend money on some toys! They're not huge purchases I know... they're not going to break the bank, but it's something I'm very conscious of as I don't like to buy stuff "just because". In the meantime, the kids are loving it! :)
And maybe I'll just go out and get a speaker set to go with the iPod so we can have some music up at the cottage.....
Thursday, August 10, 2006
If you give a child...
I love this so much, when I saw it in the "DS circles", I had to post it right away on my blog. The boys and I are HUGE fans of Laura Joffe Numeroff's series of books (for example, "If you give a mouse a Cookie") and this writing follows in that vein. It also speaks very eloquently for those of us who often have to fight the educational system and their expectations (or more often than not, their lack of expectations). I'm quite fortunate that we've had wonderful educators in Ryan's life so far, but I know a lot of other people who have been told blatantly and subtly that their kids just "can't do that".
If You Give a Child An Appropriate Education - by Lori Miller Fox
If you give a child an appropriate education, he's going to ask for opportunities.
When you give him the opportunities, he'll probably ask you for support.
When he works very hard, he'll ask for recognition. Then he'll want to look at his accomplishments and make sure he isn'tdreaming.
When he looks at his accomplishments, he might notice he doesn't have many friends. So he'll probably ask for a group to fit in with.
When he's finished getting comfortable, he'll want some friends to help him have fun. He'll start playing. He might get carried away and play with every child in his class. He may even end up making a playdate! When he's done, he'll probably smile. You'll have to get him back to his school workwith coaxing and encouragement.
He'll refocus, concentrate on school work and smile a few more times. He'll probably ask you to challenge him more.
So you'll rewrite the goals on his IEP, and he'll ask to do more and more. When he does more and more, he'll get so excited he'll want to do harder things. He'll ask for you to believe in him. He'll try his best. When he's done, he'll surprise you with accomplishments.
Then he'll want to know he has approval. Which means he'll need acceptance.
He'll look for acceptance in your eyes and stand back to find it. Seeing your acceptance will remind him that he's the same as everybody else.
So...he'll ask for opportunities. And chances are if he aks for opportunities, he's going to need further education to make the most of them.
Posted by LoriFox on November 28, 2005 at 07:00 AM
If You Give a Child An Appropriate Education - by Lori Miller Fox
If you give a child an appropriate education, he's going to ask for opportunities.
When you give him the opportunities, he'll probably ask you for support.
When he works very hard, he'll ask for recognition. Then he'll want to look at his accomplishments and make sure he isn'tdreaming.
When he looks at his accomplishments, he might notice he doesn't have many friends. So he'll probably ask for a group to fit in with.
When he's finished getting comfortable, he'll want some friends to help him have fun. He'll start playing. He might get carried away and play with every child in his class. He may even end up making a playdate! When he's done, he'll probably smile. You'll have to get him back to his school workwith coaxing and encouragement.
He'll refocus, concentrate on school work and smile a few more times. He'll probably ask you to challenge him more.
So you'll rewrite the goals on his IEP, and he'll ask to do more and more. When he does more and more, he'll get so excited he'll want to do harder things. He'll ask for you to believe in him. He'll try his best. When he's done, he'll surprise you with accomplishments.
Then he'll want to know he has approval. Which means he'll need acceptance.
He'll look for acceptance in your eyes and stand back to find it. Seeing your acceptance will remind him that he's the same as everybody else.
So...he'll ask for opportunities. And chances are if he aks for opportunities, he's going to need further education to make the most of them.
Posted by LoriFox on November 28, 2005 at 07:00 AM
Friday, August 04, 2006
More prayer requests...it's been a tough week.
My heart is heavy right now with so much illness and stress, so I ask your prayers and positive thoughts for healing, for comfort, for peace and for hope.
1. My Mom found out this past week that she is going to need dialysis on a regular basis. Although it is manageable, it is another thing to deal with. Mom, please know I keep you in my heart and my prayers daily. I love you! We can handle this together and we'll all do whatever we can to help.
2. Our good friend "G" had a stroke this past week. We are thankful that it has "just" affected one side of her body and that she is fine cognitively. We pray that she will be able to return to full health soon and that she can return home to her family. She has young children as well so we pray that the kids will be OK as they deal with their Mom being in hospital for at least another week.
3. I had chemo again yesterday and am feeling pretty good, all things considered... just tired. Last week really wiped me out but I think I was fighting an infection. I saw my nutritionist today and I'm upping one of my supplements to deal with the mild anemia I'm experiencing.
4. Kurtis has been sick on and off since Tuesday. This is my healthy boy who very, very rarely gets sick. If he's still running a fever tomorrow, I'll have to get Tom to take him to the walk-in clinic. It's tough on both of us as I want to comfort Kurtis, but I have to be very careful as I can't risk getting sick. So no kisses, no close snuggling - just hugs. He understands, but when you're little and sick, you just want your Mommy, don't you?
5. A good on-line friend, "S", had her Mom lose her battle to cancer. S, you know I keep your family in our prayers. Although your Mom is released from her pain, it leaves a huge hole in your life and we pray for comfort for you.
1. My Mom found out this past week that she is going to need dialysis on a regular basis. Although it is manageable, it is another thing to deal with. Mom, please know I keep you in my heart and my prayers daily. I love you! We can handle this together and we'll all do whatever we can to help.
2. Our good friend "G" had a stroke this past week. We are thankful that it has "just" affected one side of her body and that she is fine cognitively. We pray that she will be able to return to full health soon and that she can return home to her family. She has young children as well so we pray that the kids will be OK as they deal with their Mom being in hospital for at least another week.
3. I had chemo again yesterday and am feeling pretty good, all things considered... just tired. Last week really wiped me out but I think I was fighting an infection. I saw my nutritionist today and I'm upping one of my supplements to deal with the mild anemia I'm experiencing.
4. Kurtis has been sick on and off since Tuesday. This is my healthy boy who very, very rarely gets sick. If he's still running a fever tomorrow, I'll have to get Tom to take him to the walk-in clinic. It's tough on both of us as I want to comfort Kurtis, but I have to be very careful as I can't risk getting sick. So no kisses, no close snuggling - just hugs. He understands, but when you're little and sick, you just want your Mommy, don't you?
5. A good on-line friend, "S", had her Mom lose her battle to cancer. S, you know I keep your family in our prayers. Although your Mom is released from her pain, it leaves a huge hole in your life and we pray for comfort for you.
Wednesday, August 02, 2006
Down Syndrome Advocacy
This topic for this post is stolen from Nicole.
Brian Skotko is an amazing young man. He has a sibling with Down syndrome, is a highly educated doctor, is the co-author of one of my favourite picture books, and is doing some interesting research into the more social aspects of families who have a child with Down syndrome (including how doctors inform parents of the diagnosis and effect on siblings).
I agree with Nicole that the world would be a better place if everyone had a close friend or relative with Down syndrome. And Brian is a shining example of how wonderfully his sister has affected his life.
"Disorder Doesn't Mean Doomed" is a great article and shares some of Brian's views. Please visit his web site by clicking his name above and read that article too to get a real picture of Down syndrome
Brian Skotko is an amazing young man. He has a sibling with Down syndrome, is a highly educated doctor, is the co-author of one of my favourite picture books, and is doing some interesting research into the more social aspects of families who have a child with Down syndrome (including how doctors inform parents of the diagnosis and effect on siblings).
I agree with Nicole that the world would be a better place if everyone had a close friend or relative with Down syndrome. And Brian is a shining example of how wonderfully his sister has affected his life.
"Disorder Doesn't Mean Doomed" is a great article and shares some of Brian's views. Please visit his web site by clicking his name above and read that article too to get a real picture of Down syndrome
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