Wednesday, April 26, 2006

...but does it qualify as a medical expense?

Before I tell today's story, I first have to give a bit of history.

Two summers ago (2004), Kurtis was begging for a "blow up thing"... this is one of those inflatable bounce'a'rounds that you see at public events like Canada Day or at parties (like this at ToysRUS). Honestly, the child was asking for it for his birthday, asking if he had enough allowance to buy it himself, praying for it at night... you get the picture. In August 2004, Tom happened to see one of them on sale at Costco so he bought it and surprised the boys with it. This is one of the best purchases we have ever made. It got used virtually EVERY day (except for rain days) for the rest of the summer and early fall. In fact, we used it so well, it's practically falling apart now. But the best thing about it is how it developed Ryan's gross motor skills. Like many kids with Down syndrome ("DS"), Ryan's gross motor skills were delayed due to low muscle tone. He didn't start walking until just before his 2nd birthday and at the time, was having some trouble learning to jump. Well, after we got that inflatable, Ryan's gross motor skills started developing rapidly until now, his gross motor is his strongest area. His physio therapist couldn't believe the development over that fall. So truly, it was the best toy we have ever bought... it's a toy that's well used, enjoyed by little ones and bigger kids and it was an amazing tool to help Ryan.

That brings us to today's post. We have been working on teaching Ryan to ride a tricycle for a long time now. Last summer he finally got the hang of pedalling, but for some reason, he just didn't grasp the concept of steering. So he often ended up going nowhere... or going onto the grass (which stopped him)... or hitting the car (which also stopped him). We both got frustrated! Well,, now remember that go-cart that Tom bought for Kurtis? Tom's been teaching Ryan to ride it. He taught him to push the lever to go and to let go of it to slow down. But the most amazing thing (as you've probably guessed) is how quickly Ryan has learned to steer! I was watching him today and I was amazed at how well he steers it. He corners great and steers exactly where we ask him to. So I brought out the "new" two-wheeler bike with training wheels to try and my little boy surprised me once again. He's riding a two-wheeler!! AND steering it! So once again, a totally fun non-therapeutic toy proved to teach my little guy something in a VERY short time that we couldn't in months of work. Do you think Revenue Canada will let me claim it??

Friday, April 21, 2006

My boys

An old friend, with whom I've recently been reacquainted, asked to see pics of the boys. I thought I'd post them here so that other old reacquainted friends can see them too.

One of my favourites - the first day of school, Sept 2005

Ryan's famous grin:

Kurtis thinks the leafblower is a wonderful toy:

How old are you today Ryan?

We think Kurtis will be an engineer when he grows up. Right now, he wants to design rollercoasters when he grows up!! This is as exotic "marble run" we saw at the Baltimore Science Centre. He was fascinated by it and spent most of his time watching it and figuring it out.

Thursday, April 20, 2006

Update - April 20, 2006

Overall, chemo went better than last time. I got the "good" i.v. drug ordered for each day - unfortunately, although they can only give it to me every 24 hours, it wears off around 18-20 hours. I need to talk to the doctor about that next month! I was also more aggressive on taking the oral anti-nausea meds. But, although the sickness was less intense, it went on longer. I'm sure part of that was because I had an additional day of chemo as well (due to the new chem we introduced). I'm still struggling with low energy levels but am learning how to manage them better. I'm finding that a walk every day actually helps with my energy so I'm going to keep that up. It's easy right now as the weather is so beautiful - the birds are chirping and the flowers are starting to bloom! I'm also learning not to overdo it and to listen to my body more. So as much as I wanted to go out to lunch with my husband today, I knew I needed to stay home and get some sleep as otherwise I will pay for it later this afternoon when the boys are home.

Wednesday, April 19, 2006

Happy Birthday Kurtis!

Happy birthday my love! You are an amazing kid and we'll always remember your birth day as one of the two most special days in our lives! Love your Mom and Dad

Kurtis got a bit spoiled yesterday - but,, that's what's supposed to happen on your birthday, right? First, we start with breakfast - whatever breakfast he wants... Well, Kurtis's favourite thing is an egg "mcmuffin" (english muffin, egg, cheese and ham or bacon). He loves them at the market, at home... anywhere. Unfortunately, our stove and oven broke last week so I can't cook it for him. But there is one place that makes them! So off Mom and Kurtis go to breakfast at McDonalds. What a treat it was to start a special day off with some special time with my big boy! Then a quick stop at Tim's for some Timbits for the class treat. His requested birthday dinner was pizza (ordered in, NOT homemade) and ice cream cake from DQ. According to Kurtis, this was just about a perfect day - food wise! LOL

We opened presents and then Dad brought in the big present... I wonder who actually enjoys this toy more? I think Tom is a bit jealous - he wishes they made it in an adult version!! Kurtis and Tom have been talking about building a go-cart for 1.5 years now, but when Tom saw this at a scratch'n'dent sale at Canadian Tire, he couldn't pass it up!

Friday, April 14, 2006

Ramblings from the hospital..

I got in on Thursday so I'm on day 2 of 3 day chemo. It's going slightly better than last time but still struggling with minimizing the yucky side effects.

Thank you to all my friends and family.. your love and support has been overwhelming and I want you to know how much I appreciate it. To those of you who send cards and emails, to my friends who visited me today even though I wasn't great company, to those of you making special foods for my special diet, to my sister who comes up to help me shop and comes to visit,, to my parents who are always praying for me..THANK YOU. And mostly thank you to my amazing husband - I LOVE YOU!

Hair - it's gone... totally absolutely gone. I got it shaved off on Wednesday night as it was getting very thin. Kurtis says I look like a boy and Ryan still won't come near me unless I have a scarf on.. I asked Ryan to give me a kiss and a hug and he says "noooo". I ask him where my hair is and he points to the ground and then makes a throwing action with his hand. I say "yes, it fell to the ground, didn't it" and then he signs "silly". He'll get used to it shortly I'm sure. It is a bit of a different look though! I don't think I'm quite brave enough to go out in public like this. On the plus side, I have a great new wig that I really like - me, the one who said she probably wouldn't get a wig, may now just wear it more often than not! It's strawberry blonde and the style is fairly similar to what I had just before I lost it. Scarves have been rather hard to find - at least ones that are stylish and don't make me look like a scullery maid! LOL

Wednesday, April 12, 2006

No chemo today.. The Repeat

There was no bed available at the hospital... so we come home and wait for a phone call tomorrow. It's a bit frustrating having driven all the way there,,, made arrangements for the kid,, etc etc, but we always knew that there was a risk there'd be no bed available.

My blood counts were good (YEAH!) and we discussed the recommendations from the other doctor. We're adding another drug as recommended but that also means another night in the hospital - 3 nights now - and it may mean more nausea and fatigue. We'll see how this round goes.

Tuesday, April 11, 2006

Glory- for Jane

My sister bought me a book called "The Valley of Cancer - A Journey of Comfort and Hope" by Angelina Fast-Vlaar. Here's part of a poem that I read last night that touched me very deeply. Thank you Angelina for sharing your gift of poetry and writings with those of us going through this terrible valley.

Glory - for Jane
...Jesus said that every hair of my head
is numbered and that not one
shall perish without His knowing.
I ponder these words and hear Him say,
Draw close my child;
let My love be your covering.
Feel My hands
upon your hairless head
and hear My tender words
of compassion and comfort.
Rest, relax, I will cover you
during this time of trial and tears.
And when your beautiful hair
has all grown back there will be
glory of a deep dimension
because you have walked with Me.

Monday, April 10, 2006

No chemo today..

They moved it to Wednesday in order to receive the report from the Doctor at Mount Sinai. I feel like I just received two free days! It's silly as all it's done is move it over... and thrown a wrench into Easter plans, but somehow I still feel excited that I've got two "extra" days! I guess it's because I've got more energy over the past few days. just in time for them to knock it out of me again...

My sister came up to visit today.... We dropped Ryan off at a friend's house (a WONDERFUL friend she is!) and then went shopping! I got one great hat and some cool lime green slides. Nothing like some great shoes to cheer a girl up.

Tom and I are taking the kids to Chucky Cheese tonight. We had promised to take them for Ryan's birthday back in February but between March break and chemo and recovery from chemo, we haven't really had the time or the energy. That place is just too much for me... too many people, too much noise, and a lot of work keeping track of the boys... but they LOVE it and that's why we do it.

Saturday, April 08, 2006

Who needs real toys?

Kurtis's birthday is coming up soon and my spoiled boy can't think of anything he wants (although, funny enough, as I type this, he just popped by to tell me he thought of something he wants - yet another Hot Wheels toy- I should own stock in that company). But the past few days have been interesting as they've been having fun with other toys.

The boys have been having a blast playing with a cardboard box with a skipping rope tied to it. And here's something Ryan was playing with yesterday. This boy cracks me up as he very carefully put two pillows at the bottom to cushion the ride after the first trip down was a little bumpy.


Friday, April 07, 2006

Second opinion update

We saw "the sarcoma expert" , Dr.B at Mount Sinai in toronto for a second opinon on referal from our Dr. C at Grand River Cancer Centre... One of the drugs which is useful in attacking the cancer has lifetime limits and it may be that my battle with Hodgkins when I was a teenager may have used up some of that. The doctors will consult and let me know on Monday.

Dr B also suggested surgery maybe possible - which was interesting as Dr C dismissed it. That option is still quite far away as we need to first get through chemo before surgery is even an option.

We did get some news from my CT scan and it wasn't positive. I have a couple of tumours other than on the pleura (lining of the lung) and they're fairly large tumours. This was quite a bit of a shock as I had been told that they were confined to my pleura. Dr. B is suggesting a bit more agressive use of the chemo to get these "new" tumors in control. The good news is that my type of cancer is very responsive to chemo and they should be able to shrink the tumours.

Monday will be interesting as Dr C receives Dr B's report and we'll discuss what to do next. Dr. B was very optimistic and hopeful which was good too.

Calling all comedians!

I truly do believe that laughter is great medicine. So on that note, please send me all your funniest jokes.. Ok, even if they're just chuckle-worthy, send them anyways. Here's one that's kept me laughing for a while..

Why are do seagulls fly over the sea and not the bay?
Because otherwise they'd be called bay-gulls!

well,,, I thought it was cute.

Thursday, April 06, 2006


Nope, it's not gone yet, but it won't be long. My hair, that is. It started falling out yesterday so I think I probably have 3-4 days of "good" hair before I have to start doing the covers. For the most part, this doesn't bother me - although I must admit I felt a twinge of sadness when I first noticed it coming out.

I went wig shopping last week with a friend but didn't find anything I liked, so I'm off tomorrow as well. I can't imagine that I'm going to wear this all the time. Having done the wig thing once before, I'm not eager to repeat it. I found the wig itchy, hot and generally bothersome. Then again, I don't like hats either. Guess it's a sensory thing with me. But, I'm going to try to get a wig for "going out" (wherever that might be as going out is a bit restricted due to risk of infection). I got some turbans today at HopeSpring (a cancer support centre) - but I hate that look. I also bought a hat and a scarf - so maybe I'll go the funky hat look! Or,, depending on how it looks, I just may go au naturel - especially in the summer. Maybe I'll even post a picture with the new "do"!!

Monday, April 03, 2006

The latest update

So here's what's happened in the past few weeks...
I had my first round of chemo on March 20. The chemo I'm on has to get infused (via iv) over 24 hours so I'm admitted to the hospital. I also need to get an infusion of a drug to protect my kidneys as the chemo is very very hard on my bladder and kidneys. This takes 12 hours. So, in all, the chemo took about 40 hours in total. The chemo was rougher than I had anticipated. I had heard how they're able to control the yucky side effects of chemo with good drugs... Let's just say, we now know which drugs work for me and which ones don't!

I've seen a dietician (the same one we use for Ryan) and am working on including or increasing certain foods on my diet. I'm also starting certain supplements. Hopefully these changes will help deal with what is known as "chemo related fatigue" which I'm already experiencing.

I'm seeing an oncologist at Mount Sinai today for a second opinion. I'm hoping this doctor will agree with the protocol that I've already been given - it means I'm in good hands and then I have no decisions to make. I am so thankful for my cousin, "D". She's an pediatric oncology nurse practitioner and has been such an amazing source of information and of comfort. She knows the questions to ask and has helped me immensely. Thank you D!

Bump on the Road

You'll have to bear with me as I learn the ropes here... I started setting up this blog 4 days ago and am finally getting around to posting. It'll probably be a while before I figure everything out. But I'm hoping this blog will serve as a vehicle to update my friends and family on my battle with synovial sarcoma. My email list was getting large and apparently it was getting forwarded to friends of family and friends of friends. So it makes sense to just update in one spot. I'm not a writer, but I'll do my best to make it readable.

Although this blog is primarily about my battle with cancer, I know I'll also be writing about the two things I'm most passionate about: Kurtis and Ryan (and in particular, Down syndrome and advocating for people with Down syndrome). So bear with me!

I just wanted to share a bit about why I named my blog. I was in a hospital room with 3 other women - all much older than me. I was recovering from a biopsy and had just found out that they had found some kind of cancer on my lung. It 's fair to say this was the lowest point in my life. I chatted a fair bit with Lillian - a woman in her mid-70's dealing with a diagnosis of cancer as well. She told me a lot about her life - and it had not been an easy one. Then she said "and this cancer is just another bump on the road of my life". I really liked that analogy and started referring to this cancer as just a "bump". All my files that I'm keeping are called "Bump on the road". So why not my new blog too?