In Loving Memory

My mom passed away last night, peacefully, in her sleep at the age of 66.

It seems so surreal at this point. So unbelievable, yet it's there and it's all I can think about. And the next few days will be filled with a multitude of tasks and details to attend to.

Mom, you will be so greatly missed. We all loved you dearly and there will be a huge void in our lives.

I have so much to say, but I don't know what to put down... or how to say it. So for now, this is what it is.

Update on my Mom and me..

Apparently this round of chemo wasn't as easy as I thought. Sunday was rough again with a lot of nausea, vomiting and fatigue. Today the nausea is better but I am still extremely fatigued.

Tom is driving me to my parents' house today (as I don't trust myself to drive with this level of fatigue). Palliative care has been brought in to help take care of my Mom. She had two OK days when she came home from the hospital but hasn't been well since. It's important for me to be home at this time and be with my Mom, Dad and my sister. Please keep us all in your prayers.

Sunday Grains of Gratitude

1. I'm grateful that this round of chemo wasn't as hard as the last one. I'm feeling pretty good (9 out of 10 on the chemo scale) - what a relief! I just need to get a bit more strength back as I'm still feeling fatigued.

2. I'm grateful for the food people have brought us. We won't go hungry and I don't have to cook!

3. I'm grateful for the extracurricular activities my children can participate in. I'm thankful for the multitude of different opportunities that are available to them. On Saturdays, Kurtis is playing basketball and Ryan is participating in a music therapy class - and they both enjoy it!

4. I'm grateful for the laughter of my kids this morning as we all piled into one bed and giggled over silly things. There's really nothing like the laughter of little kids!

That old squeaky wheel...

I gave my letter to the doctor yesterday. I ended up seeing a different doctor (they work closely and my doctor was right there... they just were very busy) and gave the letter to her. But, we ended up talking about the events and what happened. She was VERY apologetic and said that never should have happened. She then gave me a number where I could have her paged directly if I wasn't getting a good response from the team. She then obviously gave the letter to the head nurse as she came and apologized to me as well. THEN... the letter made the rounds with the oncology nurses and they apologized as well (although it would have been a bit more tactful to wait until I was out of the room before distributing the letter!! LOL). The nurse who treated me also gave me her direct phone number so that I could call her if I was feeling terrible or had some questions. THEN... this morning I received a call from the head nurse checking in to see how I was feeling. I have a feeling I'll be getting great "service" now!! And I'm glad I received the response I did... at least I feel they "heard" what I was saying.

On another note...
hopefully my Mom will be coming home from the hospital today. She is getting quite anxious to come home, and I don't blame her. She's getting frustrated with laying in a hospital bed (you know they don't buy Sealy mattresses there) and the noise that generally occurs. We're thrilled she's able to come home so soon.

Now, I'm off for my afternoon nap. This chemo business makes one tired!

quick peek in

I haven't had time to write or even check email this past week as it's been another tough week but here's a quick update...

My mother has been in the hospital since last Monday evening. She was quite sick but is recovering slowly. For those of you who pray, can you please pray for my Mom.... pray for her physical strength to return but also pray for peace and comfort. Mom, I love you so much!!

I go in for chemo again tomorrow. Wow - it's been a fast 3.5 weeks! I've prepared a letter addressing my concerns and feelings that I will give to my doctor... can't wait to see his response! And I'm hoping this one goes easier! I'll be more aggressive with drinking as my cousin (who's a nurse) suggested I may have been dehydrated (which makes nausea worse). yum... gatorade!

And my baby boy lost his first tooth! I didn't even know it was loose and I don't know where it is. I just noticed a gap while we were in the grocery store this afternoon. I'm pretty sure the tooth was there this morning....Ryan isn't too interested in the fact that it's gone and hasn't expressed any interest in talking about the Tooth Fairy. Also, money doesn't mean anything to him, so what should the Tooth Fairy bring? Kurtis got $5 for his first tooth (the Tooth Fairy gets cheap on 2nd and more teeth). Perhaps she'll bring a Dora The Explorer book...

Isn't that picture up above amazing? I can't believe all those finches were there at once.

About Ryan

I've been writing a lot about Kurtis lately, so, as promised, here's something about Ryan. It's not a story but some information about Ryan. Ryan hasn't been "tagged" (something done in the blogging world) but I saw it on another blog and thought I'd use it.

3 things that scare me: Andrea Bocelli and Elmo singing one particular song on Sesame Street; sometimes loud sounds but not much else

3 people that make me laugh: my brother, my mom and my dad

3 things I love: Only 3??? But there's so much! music, swimming, dipping sauces, Sesame Street, horsing around with Kurtis

3 things I dislike: getting my nails cut, being asked to do anything I don't want to do, doing some of the homework Mommy makes me do

3 things I don't understand: why my parents don't think it's funny when I run away in stores; why I can't put ketchup on everything; why my parents won't let me get up and roam around when I'm awake...they keep insisting 5:30 am isn't wake up time yet and I have to sleep some more in their bed

3 things on the floor: 3 Halloween costumes I'm considering; about 10 books; the blankets off my bed (it's easier to jump on the bed when the blankets are off)

3 things I'm doing right now: eating breakfast (honey on bread with a glass of milk), watching Garfield the movie (yes, my Mommy is letting me eat breakfast while watching a movie at 7:30 in the morning!!) and teasing my brother (soooo much fun... he's so easy to bug!)

3 things I can't do: roller blade or ice skate - I really really want to because Kurtis does, but I haven't learned yet; play outside by myself; use a knife

3 things that best describe my personality: very friendly, very happy and a joker

3 things you should listen to: a dog barking (it means there's a dog somewhere close and you NEED to go pet it); me (I don't talk a lot but I sure have a lot to tell you); music

3 of my favourite foods: bologna; apples with creamy cucumber dressing as a dip; ketchup rice chips

3 things I'd like to learn: anything Kurtis is doing; ride a bike; use a knife

3 of my favourite drinks: juice, pop and chocolate milk

3 shows I watch on occasion: Sesame Street, Dora the Explorer and Spongebob Squarepants

Finally...making it back here...

bad bad blogger.... not keeping everyone updated...

Anyways, here's the scoop:

My last "chemo" post was on a Tuesday. I actually didn't start feeling better until the Saturday after that post. So in all, it was a 9 day haul. Thursday and Friday were good... I don't really recall Saturday and Sunday as I slept through them... and Monday through Friday were tough. I dealt with nausea and occassional vomiting the whole week. I was fatigued beyond belief too. Then on Saturday, I was better.... energy still low but MUCH MUCH better and I was no longer nauseaous. I've been feeling much better since then as well. My appetite is returning and my energy is back to its normal low levels.

I am quite ticked off with my "support" team at this new hospital. I called them 3 times when I was sick - I have been through 4 types of chemo but had never felt this bad for so long so I needed to know if this was normal or if I should get some blood work done (ie for transfusions or injections to increase cell counts). They returned my calls the first two times but the information I got was less than helpful and a bit patronizing and I never actually spoke to my doctor or his nurse. They didn't even return my call the 3rd time.

When I went to get my bloodwork done this past Tuesday, the assistant made some comment about me "calling a lot". I told her that I was feeling VERY very bad. She then commented along the lines of: "well... sometimes you just need to just bear down and get through it"... I told her it was easy for her to say! ooohh I was mad.... exactly how many chemo treatments has she gone through? I then told her I was nervous because I thought I might be getting one of the nasty side effects... she replied that "oh.. that would take much longer to happen and it wouldn't happen like that"... and I would know this how?? I don't have a medical degree! Would it have hurt them to address that concern of mine with some compassion?

The nurse taking my blood was much more sympathetic and said I definitely need to tell my doctor how bad this chemo was. I lost 10 lbs (although I've now gained 5 of that back - it was probably mostly due to fluid loss) and a week of my life. This may be par for the course for this chemo for me, but in no way did they prepare me for this... or reassure me as I was going through it. I am so disappointed with their lack of compassion and understanding - especially this assistant.

I'm going to put the facts and my thoughts on what happened on paper and give it to my doctor. This way I can deal with it unemotionally and calmly.... and he can understand what happened. I realize they are busy.... I realize they probably get inundated with phone calls from people complaining about every little thing... but that doesn't mean they still can't reply with compassion and reassurance. It's tough enough going through chemo and dealing with side effects that are scary... we don't need to be patronized or ignored as well.

Grains of Gratitude

This is a post I started on Sunday (hence the date) but never finished until today (Friday, Oct 13).

My friend, Christy, has a Sunday "Grains of Gratitude" post. I won't be doing this every week, but I thought I'd do it for Thanksgiving. So, here are some of the things I'm thankful for. (And yes, I'm incredibly thankful for my family and friends, but because that's so obvious and something that permeates every hour of my every day, I'm not going to include that in my list).

1. I'm thankful for Fall. Autumn is my favourite season of the year. I love the smell in the air. I love the crisp, cool air in the mornings. I love the crunch of leaves as you walk through them. I love putting on a sweater for the first time. I love fall colours - rich greens, golds, reds and oranges. I'm thankful for all the seasons, actually. Each one brings its own unique attributes and each is beautiful in its own way. And I'm thankful that we get to experience all 4 seasons where we live. But fall is the best.

2. Right now, I'm thankful I have some extra padding on this body of mine. This is something I never thought I'd be thankful for! I lost another 5 lbs this round of chemo. I don't want to lose weight and am working on that,,, but I'm thankful that these 5 lbs are not a big deal right now.

3. I'm thankful for the gifts Down syndrome has brought our lives. This really is a whole other post, but in short, Ryan having Down syndrome has brought me some wonderful friendships, it has taught me a lot about what is really important in raising a child, it has brought me a closer relationship with God, and most important, it has taught me about TRUE unconditional love.

4. Believe it or not, there are gifts I have received as a result of this horrible cancer. I am thankful for the openness it has brought to my relationships with my friends and family. I've never been one to tell people "I love you" (other than my parents, Tom and my kids), but it's easier now. It's easier to tell people how important they are to me and how much I think of them. And for that I'm thankful - as these people deserve to be told that! I am also thankful for the love and support I have received. It is a wonderful gift to feel connected to loving, caring people.

A quick update...

I'm still recovering from this chemo... it has knocked me flat. The first two days (Thursday and Friday) were fine. In fact, I even went out on Friday night to a pub for a short while as the "old gang" was meeting a friend who was visiting from Austria.

Then Saturday hit... I slept almost all of Saturday and Sunday. I thought I knew fatigue - but this was overwhelming exhaustion. I managed to make it out of bed on Monday for a while but still slept most of the day. Today is a bit better, but I still have virtually no energy and have mild nausea. I talked to my oncologist's office and they say it isn't uncommon and it seems (of course) that it is hitting me harder than most people. I have managed to eat a bit yesterday and today ... I know I should eat as I won't regain energy without nutrition, but it's so hard when you're nauseaous and don't have an appetite.

I continue to covet your prayers... especially during this rough one. Thanks.

How I love that boy of mine!

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.

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!

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.

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...

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.

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

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".

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!

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!

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.

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.