Fun at Oma and Opa's house

Here are some pictures from today at Oma's house. The boys love to go swimming there and have a blast jumping around in the water. Look at Ryan jumping off the diving board... he always jumps out and leans forward so it's almost a belly flop. It always looks a bit painful to me, but it doesn't seem to bother him!

And check out the playhouse that Opa built for them! (Opa is in construction, so this was a hobby for him). Opa loves the architecture of Hundertwasser and designed this playhouse with that inspiration. I can't go in the very top room as it makes me dizzy, but the kids love it.

Thank you to everyone

It's 4:20 am and I'm wide awake. I had to take some steroids to deal with possible allergic reactions to the chemo drug I had yesterday and one of the side effects is insomnia (along with an incredibly hot and red face and some bloating in the face already). Thank goodness I only have to take these pills for 3 days. And so far, this chemo has been very easy although I've heard days 2-4 get a bit rougher. A good friend drove me home for the hospital and I was able to chat with her for quite a few hours before I got tired - we even went for a walk together! Thanks J! You're an amazing friend.

Anyways,,, I just wanted to say thank you to everyone who has posted to my blog and emailed me or phoned me. I don't think you know how much it means to me to have such incredible support. I really draw strength from knowing that prayers are being said and that you're thinking about me and my family.

Chemo Brain

First... this last round of chemo was the easiest I've ever had. And considering I've had 3 types of chemo in my life, for a total of 12.5 rounds, I think I have some good comparison! It was strange to be in the clinic instead of a hospital bed. Lazy boy chairs everywhere filled with people hooked up to i.v.'s; muzak playing in the background; volunteers anxious to get whatever you need. I was there and back home within 3 hours and the proceeded to sleep the next day and a half - apparently it's not just the anti-nausea drugs that make me tired. But the nausea was almost next to nothing and that made me very happy.

And now for the topic of the day...
Apparently there is actually a "label" for the decrease in mental alertness I've been experiencing - CHEMO BRAIN. I've been having trouble remembering names of people and things. It reminds of the time when I was pregnant and was telling someone to put something on the... you know.. the thing with four legs... you put plates on it and eat at it... yeah, that's it.. a TABLE. I'm having the same type of short circuits now. I happened to read an article in a cancer magazine at the Cancer Centre that talked about "chemo-brain". Here's what it says:
"Chemotherapy is known to be a neurotoxin and does impact on brain function. Many patients report psychological side effects of chemo that include mental and physical fatigue, stress, depression, mood disturbances, difficulty with focus and concentration, forgetfulness and confusion." It isn't clear whether all of this is a direct result of chemotherapy or an indirect symptom attributable to extreme fatigue, physical pain, stress.. etc etc. In any event, the good news is that it is temporary and things should return to normal gradually when chemo ends.

So I'm using this as my explanation for my TV addiction and my forgetfulness. By about 8:00 at night, I start to have a lot of trouble concentrating because I'm quite tired by then. When I've gone out for dinner with friends, or over to friends' houses, I'm ready to go home by 8:00 and have trouble carrying on a conversation. The only thing I seem to be able to do is plop my behind in the lazyboy chair and veg in front of the TV for a couple of hours.

I'm also incredibly forgetful - if it's not written down, it's as if it was never mentioned to me! For example, on the Victoria Day long weekend, my mother called on the Friday to ask if she and my Dad could come to visit sometime that weekend. I told them Monday would be perfect. On Sunday, a friend called and we made arrangements to have a picnic lunch with our kids at a park for Monday. Well, imagine my surprise when, as I'm starting to work on packing the lunch, my parents walk in my front door! Now this might have happened before chemo too, but at least I've got a good excuse!

Well, it's 9:30 pm and way past TV watching time! So I'm off. Goodnight all.

The Weaver

As I embark on another chemo regimen tomorrow, I am reminded of one of my favourite poems.

"The Weaver"

My Life is but a weaving between my Lord and me;
I cannot choose the colors He works steadily.
Oft times He weaveth sorrow
And I, in foolish pride,
Forget He sees the upper,
And I the under side.
Not til the loom is silent
And the shuttles cease to fly,
Shall God unroll the canvas
And explain the reason why.
The dark threads are as needful
In the Weaver's skillful hand
As the threads of gold and silverI
n the pattern He has planned.
He knows, He loves, He cares,
Nothing this truth can dim.
He gives His very best to those
Who leave the choice with Him.

Plan of Attack

Tom and I met with my oncologist today to go over the new plan. Here's the scoop:
- two new chemotherapy drugs to try (new to me... these are established chemo drugs)
- the good news: I can be treated as an out-patient!!! YIPEE! No more hospital stays. Just a few hours in the Chemo Clinic and then back home.
- Drug A is to be administered on Day 1 and Day 8 (ie a week apart)
- Drug B is administered on Day 8
- then 2 weeks off. It's a 3-week cycle again.
- I go in on Thursday for the first treatment
- more good news (we pray): these drugs are much less emetic (nausea/vomiting producing). My oncologist says that most people don't even get sick at all and don't need anti-emetics. However, because of the strong reactions I have experienced and how sick I get, she's going to give me anti-nausea drugs anyways. But I should need a lot less.
- these drugs do have some different possible side effects but nothing major
- blood counts (and consequently, fatigue) will continue to be an issue, but that's nothing new.

Kurtis is thrilled that I won't have to stay in the hospital anymore - I can't argue with him there!

And, I have to share how thrilled with Kathy I am (our new babysitter). She truly was an answer to a prayer! She is so incredibly patient with my kids and handles them extremely well. She is mature beyond her years and the kids love her because she continually plays with them and organizes activities. But, she is also very helpful around the house. For example, we have a clothing armoire that we use to store games/crafts/etc. It was a bit of a mess and you had to search for everything. I showed it to her to let her know what was in there. I came home at night and she had organized everything in there. All neatly stacked and organized by activity and all the painting gear was put back in the painting container. You can actually find stuff now! Ryan is still getting used to all the activity. I must confess that since I've been sick (in mid-December), the kids have watched way, way, way too much TV. And Ryan more than Kurtis, just because he's only in school 2 or 3 days a week. So Ryan is used to watching his Sesame Street pretty much when he wants. He's having some trouble adjusting to less TV and more activity - let's just say he's ready to sleep when bedtime comes! But, it is so much better for him and it's already better than the first few times she was here.

Discouraging news

We got the results of my CT scan today and they weren't good. The chemotherapy has had minimal to no effect on the tumors. 4 rounds of chemo and they did nothing. We had talked about doing high dose chemo but the doctor at Princess Margaret feels high dose won't do anything either since the regular dose was so ineffective.

So we're done with Plan A and we move on to Plan B. Plan B is a new chemo protocol - 2 totally new drugs. I don't know anything about these drugs - if they're easier/harder than the first, the length of time they take to infuse etc etc. We have a meeting with my oncologist on Monday and will find out more at that time. In the meantime, we going to see if we can do a third opinion with an expert in the U.S. to ensure this Plan B is the right way to go.

Please remember me in your prayers as we deal with this discouraging news.

Keeping up wih the Kids

We've had a busy busy few days.

Friday: The Ontario AgriCentre - that Tom built - had its grand opening. They had a few dignitaries speak, then we visited the many food stations and had lunch there. We then drove to Toys R Us to shop for presents.

Saturday: Ryan had a birthday party and Kurtis had a birthday party. Kurtis also had his first piano recital in the evening. I was just bursting at the seams with pride for him - he's been taking lessons since November but he did a piece with two hands and a flourish of an ending that he "made up". He performed it absolutely flawlessly. I'm actually just thrilled that he enjoys playing and taking lessons - it's a wonderful activity to enjoy.

Sunday: Ran had another birthday party and then we had our annual Down syndrome picnic. I love our DS picnics - we have it at an amazing house. There's games for the kids, a soccer net, a beach with a small lake, a paddle boat and a trampoline in the middle of the lake. What a great time we had!


I came across this article in my "down syndrome" circles. I loved it so much because that's exactly how Tom and I, and I hope Kurtis, see Ryan. I feel exactly the way the writer does:
"So please don’t feel sorry for us. Don’t feel sorry for my brother, either. There isn’t any reason to; he isn’t sick. Don’t be scared of experiences similar to mine. I can tell you that my life would not be this happy if it weren’t for Kevin. More important, have an open mind. Next time you meet a person with a disability, remember that he or she has so much to share with you. Take the time to listen."

http://www.msnbc.msn.com/id/13088876/site/newsweek/