Monday, January 22, 2007

Scan results

so I got a quick call from a nurse about my CT scan results. It's just not the same as talking to the doctor so I won't find out the details until my next appointment in February but... basically, the scan shows no change. Again.

The good news is that once again there is no growth. The frustrating thing is that there is no reduction. All we're doing right now is holding this beast at bay, not destroying it. I'm trying not to let this get me down and focus on the good news.

The other news is that my doctor has agreed to move to a 4 week cycle (instead of 3). This will give me more time to recover after chemo, instead of the 7 days or so I was getting. This will allow me to gain more strength and energy and build up my blood as well. We're going to obviously keep an eye on this.... if the 4 week cycle causes the chemo to work less effectively, we won't do this.

And one more piece of "good" news (I guess...) - there's another clinical trial coming down the pipeline. It should be available in the middle of 2007. So in the event this chemo stops working, we do have something else to try.

So I continue to ask for your prayers. I need this chemo to start reducing the tumor size. I need to have the 4 week cycle work. I need to gain strength and energy.

Sunday, January 14, 2007

Food, glorious food!

Well, I can tell when I start feeling good for real. I start fantastizing about food. And, yes, I am feeling better. Yesterday was a "good" day - for real. And I have been fantasizing about a thick, juicy, tender filet mignon from The Keg for two days now. I wake up thinking about it. When I wake up in the middle of the night, I think about it. How weird is that?

I don't know what it is. Perhaps after 1.5 - 2 weeks of eating virtually nothing, my body is telling me it wants FOOD! And it's interesting in that it's never the same stuff from chemo to chemo. I've had pineapple cravings, nacho cravings, coke cravings.... It's like being pregnant. I sent Tom out at night for pineapple as I just HAD to have it. I got nachos at Taco Bell for crying out loud. I haven't eaten at Taco Bell in years (decades?) but those nachos were just calling out to me. As for Coke,,,, I never, ever drink Coke. I will occassionally have Diet Coke, but never the real thing. But the one chemo, I probably had 3 cans of it in 2 days. So this session appears to be steak. There's no way my digestive system could handle that much red meat right now so perhaps Tom and I will go out next weekend... I'm also craving a fettucine dish that we make very rarely (the last time we had it was probably 3 years ago)..... shrimp, tomatoes and goat cheese... rich but yummy. Maybe we'll have that tomorow night.

So Tom and Kurtis just headed out to go skiing. Only a few runs are open, but they are open! Kurtis starts his lessons tomorrow night and goes on Mondays and Wednesdays. And Ryan starts his lessons on Wednesday. Both boys LOVE skiing so much. It's especially great to see how much Ryan loves skiing - I can't wait until he learns to use a chair lift so that we can take him (right now, we're restricted to lessons only for Ryan as he's still learning to control speed and has never used a chair lift).

Perhaps Ryan and I will go out for breakfast together. The breakfast special is calling me!!!

Saturday, January 13, 2007

arrgghh .. can I whine??

How I wish I could have some REAL wine! I miss it....

And how I wish I could figure this chemo out. I'm frustrated with it. I was feeling so good after the chemo last Tuesday (the 2nd). I was tired and nauseated for two days; but the nausea was minimal and the fatigue was not totally overwhelming (ie I didn't sleep 22 hours a day). I felt pretty good Friday and Saturday and even managed to make it to my brother-in-law's party on Saturday night. I only went for 2 hours, but still, I went! Sunday was OK too and then Monday hit. I was sick on Monday and ended up sleeping most of the day. On Tuesday I felt pretty good in the morning but got sick around noon. I felt OK after my nap but not great. Then Wednesday and Thursday were rough. What's up with that? Why would I get sick a week after the chemo? Friday was a bit better and I managed to eat a bit again. Today I'm still very weak and feel tired but at least the nausea seems to be finally gone. I wish I had more energy as the local ski slopes just opened today (FINALLY!!!) and I would love to take Kurtis skiing before his lesson on Monday.

But now I can work on gaining some strength back. Have I mentioned we're planning a big trip? I'm soooooo excited about this. We, along with my sister and her family AND my Dad, are going to Disney in Florida! We're doing the Disney thing for an entire week.... staying at a hotel on Disney.... doing the ParkHopper passes and the meal plan.... relaxing at the pool at the hotel. The whole works. We decided to just do Disney (and not include Universal and Sea World etc) to try to keep things simple and not too busy. I'm a bit worried about the amount of walking involved for me, so I think we're actually going to get a wheelchair so that I can rest if I need to. And since we're staying at Disney, I can go back to the hotel, if needed, for a nap. So, if you have any Disney tips... pass them on!

And if you have any tips on why this chemo is hitting me a week later, I'd love to hear them too! :)

Happy Saturday everyone

Friday, January 12, 2007

Why It Matters

As you can tell, termination of children with DS bothers me deeply. Why? Why should I care what someone else does? After all, isn't it their lives, not mine? Most of the time, I don't care what other people do - it is their life to live, not mine. Even though I'm a Christian, I do not believe I have the right to push my views on you. And believe it or not, many people who have a child with DS are pro-choice and support abortion rights. Many are not Christians and many do not have any religious beliefs at all.

But what I do have is first-hand experience. I have knowledge that most people don't have - I know what it is like to live with a person with DS. I know what is involved in raising a "disabled" child. I know the heartaches, the work involved and the stress. I also know the incredible joy, love and rewards. I know that life pretty much goes on as normal. This is what I wish prospective parents would receive - information from someone who has been there, done that. Instead of just receiving technical, often out-of-date information from a technician or doctor.

So why do I care? Because of Ryan. Because I do not want him to feel devalued... I don't want him told that he is "less than". How do I explain to my son, who I love so much, that society thinks his life is worth less than everyone else's? How do I explain that society is working very hard at eliminating people like him? How do I teach him to deal with some, a potential employer perhaps, who thinks he never should have been born? It's not something most people ever have to deal with. But try thinking about it from Ryan's point of view.... and perhaps you'll see it from my point of view too.

But is an article that says it so eloquently.

A wonderful person I met on the internet, Betsy, wrote this piece. Here is a link to her blog: This piece is amazing and speaks directly from my heart (even though I didn't write it).

I think that what we say on the internet has as great an impact on others as our real life words do. If you think about your support system since your child has been born, wouldn't you rate this vehicle of communication very high? When you wanted to learn more about Down syndrome, didn't you go to the internet? Isn't that where the acceptance really started for you? It did for me, anyway.

This whole issue that we discussed the last two weeks became a debate on another website I visit. In essence, it turned to one of my friends saying that she would without a doubt abort if she found out her baby had DS. As the debate continued, she said it wasn't directed at anyone, and didn't effect anyone except her. She knew that I was posting and reading the thread. For a few days, I didn't answer it, feeling as you do, that my words were not going to make a change. Anyway, I ended up answering it, and I'd like to post a part of it here. I think it will explain what I'm talking about. Its really long, sorry.

Here it is: You can’t say that your opinion does not affect my family or my child. The opinion that a baby with DS is disposable, and can, and perhaps should be aborted, greatly impacts my child’s life. It impacts her every single day. It impacts people’s opinions of her. It impacts their first impression of her. It sometimes impacts the medical care she receives. It impacts her ability to be educated with her peers. It impacts her classmates, who perhaps have been told that her Mom didn’t have a choice, or didn’t know, or that ‘nowadays, doctors are able to take care of that before the babies are born.’ It impacts her sister, because when Dakotah was 3.5 years old, and showing off her little sister to her friend Michael for the first time, Michael said, “Daddy says Paige is a freakazoid.”
And you know what….it has greatly impacted me this weekend. I have shed so many tears over this thread that I have been nauseous all weekend long. It greatly impacted me, when I took my beautiful daughter Christmas shopping today, and for the first time in a very long time, spent half the time wondering if people were looking at her in pity or disgust.
It affects my posting here, because I feel very vulnerable and hurt by your words. I feel very hesitant to talk about my child, to share her pictures, or her newest achievements, because it makes me stop and wonder if people are looking at her and thinking, “Thank GOD that’s not MY child…”
It affected me a great deal this weekend, because I wanted to take my sweet baby girl and curl up on her bed with her, and protect her from the great big world who has such differing opinions of her worth. I wanted to hold this time in her life still forever….because she knows nothing but love and acceptance now. She does not know that science is working furiously to annihilate people like her…and that women are rushing to sign up for that knowledge. It affects us a great deal, because she must face that prejudice every single day – she will be the one who will have to be taught way too soon what words like ‘retarded’ and ‘retard’ and ‘mongoloid’ mean. My other daughter will have to deal with peers who will argue their desire to abort any child who has Down syndrome, and wrestle with the love for her sister over the love for her friends. So, don’t tell me it doesn’t affect me.

The view that babies with DS are disposable is what makes people tsk tsk and move away from me in a store, or makes them shuffle their kids away before they ask any questions (which I would have been happy to answer). That view is what makes the market on prenatal testing so great---instead of spending money trying to cure such fatal things as Cystic Fibrosis, or Tay Sachs disease, research spends all their time on the current ‘hot topic’ – Down syndrome. By the way, this is something you’ll be very interested to learn. Scientists are now discovering that perhaps kids with DS can be identified prenatally by a missing bone in the nasal area. (Annette's note - already discovered) This makes it all so much neater, and easier, because you can abort even sooner, and how much more convenient is that? Oh, and the added bonus is that you won’t need an amnio anymore…so there’s no chance of risking the life of a ‘normal’ baby—we know how tragic killing THAT baby might be. So, if they get really, really good enough, maybe they can eradicate every human being with an extra chromosome. And of course, with so many women blindly following their doctor’s ‘professional’ advice, it often doesn’t take much more than a sorrowful eye, or a sympathetic pat on the back, or a slight suggestion that perhaps its ‘better’ to just abort, to make a woman just learning a very frightening thing about their child decide to take the easier, tidier route out.

Of course, let’s not forget the financial aspect of it---it's neater, cleaner, easier to abort than it is to risk medical bills for a child with DS…after all, what will they ever give back to society? My child’s medical bills (ironically, NOT related to Down Syndrome) probably number in the millions of dollars. And perhaps she will never be a doctor or lawyer, or President who can ‘give back’ all that money. But most likely, she will never be in jail for killing her boyfriend, or a mother of 10 kids she can’t care for. And there is no price tag for the beautiful lessons she has taught me. Each of us should aspire to be that great of a teacher in our life times, and should perhaps use that as a scale for ‘success.’

It ticks me off, because people hold me on a pedestal…’Maybe you can handle it, but I couldn’t…” Of course you could…we can do anything we want, with the proper resolve, determination, and most of all love… I’m not special, I am no better a mother than any of you here. I’ve had no less problems because I have a child with DS…I’ve had to deal with everything each of you has in my adulthood---losing someone I love, financial problems, marital strife, etc, etc. etc. I didn’t get an instruction manual when Paige was born to me….what I did get is a clear perspective of my ability to love my child unconditionally. We each say that we could do that, but I doubt many of you have had to analyze that statement as I have. I feel badly that some of you may never understand how empowering it is to really, really learn what loving your child unconditionally means.

Perhaps you can offer some excuse for aborting that I haven’t already heard. Because none of the ones I’ve ever heard make any sense at all.

Here are the ones I hear the most, “It would affect my marriage, my husband could never accept it, couldn’t handle it.” My response: Then what the heck are you doing having children with a man who couldn’t love your children unconditionally? Why would you want to be with someone who thinks he has the right to love his family based on their level of perfection in his eyes? What are you going to do when he deems you no longer perfect enough?
“I have to think about my other kids too…” My response: That’s a great idea. Think about the wonderful lessons in compassion and acceptance you will be teaching your children. Think how secure they will feel, knowing that they are loved for who they are, not how well they score on a test, or how successful they become. Think about the wonderful lessons they will learn about the importance of other people, no matter who they are….they will learn that each of us is deserving of being loved and cared for, and that each of us is a very important part of our family and community.
“Kids with DS have heart problems, ear infections, poor vision, respiratory infections” blah, blah, blah, blah, blah." So?? Congenital heart defects are the #1 birth defect among children. I think that statistically, as many as 30% of ALL children are born with some sort of heart defect. Yet, very few of us are being prenatally screened for those, and being offered up a quick abortion because of it. And can any of you really say you would abort your child because s/he might get more colds than other kids?
“My child will get picked on.” Guess what…the reason your child will be picked on is because people believe that kids with DS are disposable…and if you decide you will not be one of those people, and surround yourself with other who believe that way, then your child will blossom. And you know what….kids get picked on for buck teeth, and big ears, and googley eyes…and not one of those kids is up for the abortion chopping block.
“You only see the people with DS that are doing really well…you don’t see the ones who aren’t.” Oh really? Well pray tell, where are the ones who aren’t doing so well? News flash…they are living and learning with their families. Paige is one of those ‘not doing so well’ kids as far as development goes….she does not walk at almost five. She does not talk. She does not self-feed. Sometimes, when people ask me what ‘new’ things Paige is doing, I have to search long and hard to come up with the tiniest thing. None of that matters one hoot in my love for this child, or her worth as a human being. Sure, its inconvenient to have to transport her right now. Sure, I had to adapt my life to learn to communicate with her. But man, I sure hope someone would do the same for me. ‘cause I wouldn’t have wanted to be deemed unworthy either.

When I was prenatally diagnosed before Paige was born, I was told she would die before or immediately after birth. I spent three months planning a funeral more than a nursery. I prayed, and bargained, and begged for one minute…just one minute to see my child alive. When I had one minute, I prayed for 10 more. And when those 10 were done, I realized that a lifetime will not be enough time to know this person who has blessed my life. Take what you want from this post…I needed to post it because someone reminded me that no one should take my words from me…especially in something this important. ~~~~~~~~ And that's it....some of it a bit angry and frustrated at someone who has known me for a long time, and who would still so quickly abort, but most of it about passion for our kids. Betsy

Thursday, January 11, 2007

Yeah for the CDSS!

Anyone who knows me knows how much this prenatal testing bothers me. It's not the testing in and of itself that bothers me. Like most technology, it has its uses and can provide a lot of good. However, in this case, what it is used for is not good. Over and over again, the testing is used solely as a way to diagnose in order to terminate. And that reeks of eugenics to me.

While driving in the car on Tuesday, I was listening to Talk Radio (am 1010 for those of you in Southern Ontario). The talk show host had found himself in a bit of "trouble" for a comment he had made the day before about feral cats. Apparently, there is a bit of trouble with feral cats in some of the areas of Toronto. These cats have become wild but people leave food out for them. So, these cats continue to thrive and breed and multiply....they are noisy, disease-ridden and smelly. So this announcer suggested that they be rounded up... the ones that could be adopted out (ie are domesticated) be adopted out through the Humane Society and the ones that couldn't be adopted out (ie could never be domesticated) be euthanized. Well... you think he'd advocated World War 3 from the response he got. The phone lines at the TV station were flooded... the emails at the radio station were overwhelming....the calls to the radio station the next day took over! One by one people called in to say what a horrible human being he was to even suggest such a horrible act.

Then, in the afternoon, on the same radio station, there was a small topic about this prenatal testing and the question was raised "are we on the road to eliminating people with Down syndrome?" Unfortunately, I wasn't able to hang around for the discussion, but having heard discussions like this in the past on this station, I know the callers - most of them are parents of chlidren with DS advocating for their kids. But, no... the phone lines aren't jammed. in fact, it is a rather quiet discussion.

I couldn't help but be struck by the irony of this. We are strongly advocating not to kill feral cats, but it's ok to kill a human being simply for not being "perfect"? oh... don't get me going!

Believe it or not, as a someone who was always pro-life (or anti-abortion, I guess), I have come to realize there is a need for legal abortion. I still can't agree with it, but I do think there should be some choice and I don't want to end up back in the ages of back-street abortions. But what I can never support is aborting a WANTED child.... a child that can be cared for.... simply because it carries an extra chromosome. And what continues to amaze me is the one-sidedness of the medical establishment. Sure, there are doctors and technicians that will tell the prospective parents that it is OK and provide them with accurate information. But more often than not, the medical establishment assumes the parents will abort. They provide doom and gloom scenarios and never even offer to put these people in contact with parents who live with a child with DS. I am terrified that in 50 years there will be very very few people with Down sydrome walking around. It makes me sad for Ryan. But more importantly, it makes me very sad for our world.

Monday, January 08, 2007



At "Sparkles in the Park"... Kurtis designated this CSI Display as "totally inappropriate for Christmas"

Tom's new toy.... hey, doesn't everybody NEED a zamboni? In reality, we have a park a VERY short way from our house that has an ice rink every winter (unfortunately, not this winter so far) and it's maintained by the neighbourhood... Tom got tired of shoveling snow and figured this way would be much easier. Needless to say, Tom is really really really hoping for cold weather!

Santa Kid.... Kurtis dressed up as Santa and surprised Ryan. Ryan actually sat on his lap while Kurtis asked him what he wanted for Christmas.

Howdy Pardner...
The boys and us at Uncle Andy's 40th Birthday Bash. Can you guess the theme? I didn't dress up as I wasn't even sure I'd be able to attend as I just had chemo a week ago. BUT... this round has been so easy... minimal nausea for only a few days and the fatigue hasn't been overwhelming so I was able to go to the party for 2 hours.