More Donations...but where did i put the cheques?

Phillipa and Gordon Wenstob have also bucked up $100 for the Adventure Challenge (Thank you!!) but I appear to have a small problem. I can't find the two cheques from Judy and Phillipa. Yikes!

Whoo-hooo! Big Day for donations!

Whoo-hooo!
First of all I would like to than David Long, CEO of The Terminal City Club of Vancouver for their $150 donation. Secondly, Judy Walsh who donated her $100 BC Carbon Credit to Canuck Place.
What an awesome idea!

Thank you David and Judy!!

Garage Band on Friday

It has been a month since I had been to the house and I always feel like I am missing something, and I was: GARAGE BAND!
In the house tonight were Karina, Jeffrey (who seems to be there the most when I am there), a couple of little ones, Lucy and Ricardo. Ricardo is new to me. He is another boy with DMD (Duchenne's Muscular Dystrophy) and we had some fun!

Tony was away tonight and Joan and I held the fort. Roberto the chef had to go home so the Nurses ordered out: Chinese food galore! After we stuffed ourselves silly Jeffrey got ready to go the Football game with his dad leaving Karina, Lucy, Ricardo, Joan and me to play Kick the Can.
I got Karina (who can't speak but sure laughs alot) and Joan got Lucy. Ricardo runs a powerful chair so he was on his own.
Believe it or not it can be quite challenging to find a boy and his chair in a big garden. When we (Karina and I ) did find him...we had to race to the tether pole. I kept losing....


A little later we made our way into the house to fetch the Garage Band game...holy crap is that fun. Joan and I had to sit back for a little bit while Ricardo did his drums solo. Boy did i want to play. Lucy hung out beside Joan who got to do Ricardo's bass drum for him. Karina and I just held hands while I tried to sing to guns n roses.
Finally we all got our turn when I masterfully sang to Radiohead's 'Creep', Joan struggled with guitar AND Ricardo's bass drum, and Ricardo kicked fanny on his part. Joan left early and Ricardo and I played for another hour. Karina just kept smiling and smiling.

I love playing at the house!

red bull rejection

I cannot believe it. I am truly devastated by the decision of the RedBull Pit crew to reject the Canuck PLace Soapbox of Doom plans outright. Depite the email candor developed between a rep of the Pit Crew we were ungraciously dumped with a "Thank you very much, P.F.O." letter and 4 RedBulls.

What now?

the super duper plans

Here is the final engineered drawings I sent to the RedBull people.
Thay are crazy if they don't let us in!!
PLANS FOR SOAPBOX ARE HERE

No house tonight

I was a busy boy today and did not make it to the house. I wonder what happened?

I was riding my bike home today after a day of hard labour** shredding trees into mulch and realised that I have ridden my $10 bike more than 2000km this year. Last year for the triathlon and Adventure challenge I think I cycled about 140km in preparation!

I will be at the house in two weeks. I am sitting on pins and needles waiting to see if the Canuck House Soapbox of Doom is going to be accepted into the RedBull Soapbox Derby. I am going to figure out how to post my plans....

**i am available for hire. i do hard work that nobody likes to do...but it costs money.

Summer Solstice Night

What? No pagan ritualistic ceremony celebrating the longest day of the year event?

We met a new peer volunteer tonight and her name is Brittany. She goes to the same school as Joan and is in Grade 11. See Kyle...they need to replace you with not one, but two peer volunteers.

In the house we have Aldo, Jeffrey, Julian, Vanessa, Emily.
I have known Julian for a while. He has been in Children's for the last couple of days and is in the house after being released from there. His mum and dad are with him and they watched the EUFA World Cup together on the Kid's Floor.

Some neat things happened tonight.
First off a great idea came from a conversation about chairs. Brittany suggested an event called "Pimp my Ride". I was complaining that few of the kids take their chairs and really do them up. Other than a few stickers they are very cool rides without the panache. What about lights? Sound systems? Most have hydraulics so they are already in the low riders category. I think that we can have a teen night for both boys and girls to do up their chairs. Get some sponsorship for the event and I see great things happening!

After dinner we went to the TV room to figure out what to do. Brittany had asked what we do on Friday nights because on Teusday it is Movie Night. Movie Night? There is a Tuesday Movie Night? WHat about Friday? I told her that we hang on Fridays. We figure out what the kids want to do and go from there.
Vanessa, being a nearly 15 year old wanted to escape the grounds, Jeffrey is pretty much keen to do anything, Aldo wants to play on the computer, and Emily is just hanging. How far can we go? Vanessa just wants to roll down any steep hil so she is thinking about getting to Granville and Broadway as a destination. A quick check with the nurses lets us take off, but we had to leave Aldo and Elisabeth at home; both are still having supper through their tummy tubes. Aldo, Tony, and Joan caught up with us a little later.
We made it all the way down to Strabucks where Vanessa bought a tea for herself and a hot chocolate for Jeffrey. Then we turned around and made our way back up the hill. Vanessa's chair is not a power chair so I got a bit of a workout going up Granville!

Back at the house we ended up in the school room playing a trivial pursuit Disney game: boys against girls. It was all going in favour of the boys until Aldo joined the dark side. His final answer won the game. I thought it was boys against girls?

Soap Box Update

It is early days yet to report on the advancement of the Red Bull Soap Box Derby idea but Leanne has taken the idea from her computer and written it down on paper...to be ready to meet with the movers and shakers of the house...i hope we get the support we need!

An Idea.....

Here is an email I sent to Leanne at the House...I hope it works!

Hi Leanne,

I am trying to convince my friend Mark to enter into the redbull soap box derby with me.
Our biggest challenge is finding the components to build a super duper soap box derby cart...herein named 'super duper soab box derby cart for canuck place'.

Why am I emailing you and Ian?

You first...you are the contact lady....you know everybody...one word from you can create a veritable cavalcade of support.
Why Ian? He looks like an 'ideas man' and the house might be a really good place to build the cart known as the 'super duper soab box derby cart for canuck place' and since he is the master of the house...his support really counts!

This is the race: http://www.redbullsoapbox.ca/the-race.php

I have no idea why I want to do this other than the fact that it looks like fun and the dangerous stupidity appeals to me.
Why Mark? He is the buffer zone between stupidity and serious injury. He has raced cars, is a professional stuntman, and is truly an ideas man when it comes to figuring out and building things.

Why Canuck Place? Any opportunity I can seize to put the Canuck Place banner up is a good opportunity for me.

How can you help? Help me spread the word that components for a super duper soap box derby cart for canuck place are needed: sturdy set of axles and wheels, devices to control steering and stopping, and some thing to mount them all onto.

what a stupidly good idea....right?? I can try be a media whore as well and try go through red bull marketing and drum up support for the house!

Let me know your thoughts...and share mine with everybody at the house who likes to do things like this!
Malcolm

Stellar Bike Modifications

I have decided to commit The Bike to the race (unless a bike benefactor comes forward). I am truly excited by the modifications of this classic BRC Bonzai. The Bull horn handle bars are gone. I cut them off and moved my brake levers in to the middle as much as possible. Now these sleek lines will allow me to drive by things without fear of catching the handle bars on a tree or side mirror.

thrilling news!

I received an email from Stephani the Adventure Challenge Coordinator stating that I had won the early bird prize draw for fundraising !! Guess what it was? A signed Canucks Jersey! Going to pick it up today!
Thank you Stephani!

Friday Night

It was a very quiet night at the house. Tony and I were both on hand and we have with us a new peer volunteer. Joan is a grade 12 student from a local private school. Our old peer volunteer has left us (we think) and did so without us saying goodbye! We do know that he has been accepted to med school...somewhere.

RIBS!! Ribs were on the table and I had a huge stack of them! Tonight there were more PCA's, nurses, and volunteers at the table. Janice and Daria were with us...snacking a bit and getting plugged into their tummy tubes. Janice was restless...really restless. I opted out of my RIBS(!!) and went away with Janice. Word on the street was that she absolutely loves Barney...the purple dinosaur. I though that Barney was outlawed years ago. Having opted out of my RIBS(!!) I opted out of Barney. Instead we went upstairs to the art room.

Janice is about...oooh...she could be anywhere from 6 to 9! I just don't know. Janice doesn't speak but communicates just fine with her face and eyes...and some unique sign language to which I am not privvy to what the signs mean! Earlier in the day Janice unclipped herself from her seatbelt and tried the quick crawl away from Melissa, a Friday afternoon Family Volunteer.
The prospect of painting piqued her interest so I got her suited up with a smock, some paper, paint and brushes. Not bad technique, until the paint brushes started to make their way to Janice's mouth. Time to put them away and do a bit of a clean up. That was fun! Janice liked washing her own hands in the sink. We did that for about 10 minutes.
After clean up we went outside to play some hoop. Janice could catch the ball with a very gentle toss onto her lap. She had more fun rolling it to the bushes than back to me. A bit later we went to the swing, and then we wandered the beautiful garden.
While we were talking Janice would use a couple of signs whenever I mentioned Sponge Bob on her shirt. She would stick her left arm out straight and place her right arm on her left shoulder. Then she would rub her nose with her knuckles...just like my buddy Buck did all the way through highschool with his itchy nose. Then she would giggle. I copied her everytime hoping that it didn't mean she had to go to the bathroom.
Dalia, Tony and Joan came out for a walk.

Soon it was time for her bath and a PCA came out to find us to take her in.
The three of us continued walking, Tony and I talking while Joan pushed Dalia. A few laps around the block and it was time to come in.

There was a family in the house with their son. Mum and Dad and Dylan made it down to the TV room downstairs...they has X-Box on their mind and we joined them in a ROUSING contest of the NEED FOR SPEED X Box race offs. This is the only time I have been successful against anyone in the house. Usually the kids kick my sorry rear end on every game.

slow posting and Mitzvah Day

The end is nearing for the school year and I haven't been at the house for a shift for a bit. A creaky old neck keeping me at bay.

I did get to the House on the 22nd of May with my school. As part of the school's community service ideals we spread ourselves through out the city cleaning beaches, helping shelters, feeding people and cleaning cars.

I was at the house with a team of 12 or so and they were given various tasks like sweeping up the grounds, sanding down some old benches that needed sprucing up, and a general good old fashioned clean up! The kids did great, but some were in need of the little instruction on the correct operation of a push broom!

The neck kept me out of the house for the Friday shift so I will be back this next one! friday.

eagles

mms://streamwav.onenetplace.com/eagle for windows media: copy and paste into 'open URL'

for the website go here: http://wavelit.com/media/702/Eagles_Nest_Live/

Girls Weekend ...again...just say no to boys

Imagine how surprised I was as I rode up the driveway to see the same teen group of girls that ignored me last month in the driveway tonight. There they were, Maggie, McKenna, Kirsten, and Juliana, and Hanna. I didn't meet Hanna last month because she got sick and went home. Tonight she was going home AGAIN but for a most awesome reason; she is flying to Orlando, Florida to go swim with the dolphins.

Earlier in the day the girls had a visit from Steven Seagal, and his 'protectors' who apparently patrolled the perimeter of the building the whole time he was there. I also heard he was protected from entering in the Wrap the Toilet Paper around a Person contest that was taking place as part of some serious pre-Olympic competitions.

After dinner I learned that the girls were setting up to watch "The Sisterhood of the Travelling Pants"--chick flick if there ever was--but they seemed 'ok' with Kyle and I hanging out with them but I think that was a little reverse psychology. Someone had the sense to call in a ringer family volunteer for these Girls Night Outs, Karen, who probably does way more for the girls than us boys.

Kyle and I went up to the Kid's floor to hang out with some of the other kids: Sangeeta and Hardeep, a brother and sister team, and Matthew a precocious little 3 year old. Sangeeta and Hardeep are both non-verbal, but hardly non-communicative. Their eyes, faces, and squeals express so much it is absolutely amazing. Sangeeta is absolutely smitten by Matthew. He will come and hold her hard .She just beams. If he walks away and she can't see him she turns her head, willing her chair to turn with her so she can see where he went.

We watched a little bit of The Wiggles: toot, toot, chugga, chugga, big red car....went outside to the garden to play and then came back inside for bed.

There is another boy in the house, Micheal, who is new to the house since April. Micheal has Kawasaki Disease, and if I understand the disease correctly, Kawasaki Disease can lead to heart problems. Micheal suffered a cardiac arrest which has caused some serious brain damage. Kyle was in his room and was looking at all of his pictures of him playing hockey from this year.

There are all types of kids that come to the house. Some are born with life limiting diseases or complications, some have genetic diseases that develop as a person grows, and some end up there out of the blue; a bad event that changes the path so quickly it can make your head spin. Regardless of the journey to the house, for everyone that comes in, whether family or child, there is always hope. Micheal's first admission was an 'end of life stay'. That was last month and they are talking about taking him home, Hanna told me she wanted to be a teacher when she grows up. I have been at the house and met four graduates of the program. There is always a future for these kids and many times that future includes leaving the house alive.

I never did get to hang with the girls again. They seemed happy watching the movie with Karen so Kyle and I left. The girls will be back in June. I can tell they are warming up to us and our time will come.

Justin did it AGAIN

If you were to go to my sponsor page at the link above you will see that Justin Fishman is at it again. He walked into my classroom with a cheque for $145 for Canuck Place. It appears that he has inspired some people in our school to give to Canuck Place. The donors would like to remain anonymous and would like Justin's name appear as the donor. Thank you Justin!!

My mum and dad have always donated to Canuck Place by way of the Adventure Challenge and I get to thank them again this year: Thanks Mum, thanks Dad!

New Canuck Place Website

Please visit the newly designed Canuck Place Hospice website!

Normalcy and some fitness...

Many perceive the things that happen at the house are difficult to deal with. It is important to remind the four of you who read the blog that at the house normalcy reigns supreme. The house provides families a place to experience traumatic events such as a critical illness, or an end of life stay without any other issues taxing their emotions. Illness and death is a normal life event and we all deserve to be in a safe environment whenever possible.

I can't forget about this Adventure I have signed myself up for. A large part of completing the race is to have a modicum of fitness. It is events like these that keep me trying to attain a decent level of fitness. How do you set your goals for fitness? Is weight loss the sole indicator of fitness? No. I like to eat. I also like to drink the occasional beer or three. The best indicator for fitness is your ability to do something as simple as moving your body!

My first goal set this season as I began to run again four weeks ago was to be able to move my body over 5k at a pace of 5 min / kilometer. I managed to do that on Sunday. Now my goal is to maintain that pace for the next five runs.....sigh.
My next goal is to be able to lift my body doing dips and chin ups. We'll have to see how that one goes.

Conner

When a child passes away at the house the volunteers are often informed by an email letting us know that something has happened. Sometimes it is a little difficult to put a face to a name when you may have only seen that child once before and never had the opportunity to hang out, and sometimes you may have never met the person.
Last week Conner, a boy I met in April, passed away in his Dad's arms. He was three. I had just posted the story about Tamryn and Justin when I read the email about Conner. Tamryn was also three when she passed away. How devastating it must be to lose a child.

Justin and Tamryn

I received one of the best donations ever this week. One of my students, Justin Fishman, had emailed me and asked if he could donate to Canuck Place, even if he didn't have a cheque or a credit card. I told him he could. He came to me on Monday with an envelope and said here you go! He then went on to tell me that he had stayed at the house a few years back. His sister, Tamryn, had Tay-Sachs and Justin's family became part of the Canuck Place family. I found an article from West Coast Family ( westcoastfamily.com ) and have included it in this post. The link to the article is here: West Coast Family --Tamryn Fishman

On July 9th, 1996,Marty and Paulette Fishman thought their lives were perfect. Their second child, a beautiful baby girl named Tamryn, was born. But the family’s happiness was cruelly short-lived. In the months following her birth, the Fishman’s slowly became concerned by their daughter’s slow development.

“We ended up seeing a paediatric neurologist, and were preparing for the possibility that Tamryn might have a neuromuscular problem and might even need a wheelchair,” shares dad, Marty Fishman, “but we were not prepared for the verdict we were delivered: our daughter would be blind and prone to seizures—and would be dead in two or three years!” Tamryn was diagnosed with Tay-Sachs Disease, a genetic disorder caused by the lack of an enzyme necessary for breaking down fatty acids in the brain and central nervous system. When two carriers become parents, there is a one in four chance their child will develop Tay-Sachs. To this day, there is no cure. For the Fishman’s, the thought of such a diagnosis was unbelievable. “Because originally, one of us had been screened and found to be a Tay-Sachs carrier as a youth, the other went for premarital Tay-Sachs screening and was found not to be a carrier,” explains Marty. “We knew that both parents had to be carriers for a child to have this disease, so [we thought] it would be impossible for us to have an affected child.”

Using samples from the Fishman’s and other Tay-Sachs carriers, scientists have since discovered an extraneous factor outside the carrier gene that lead screening to produce a “false normal” result. But for Tamryn, the discovery came too late. For the three years that followed her birth,Marty and Paulette’s lives were consumed with care for their daughter. “We decided right from the start that we would keep her at home and not place her in an institution,” says Marty. “We watched as she became progressively blind and immobile, and as she developed seizures and became unable to eat or drink. She never walked or spoke.” In a heart-wrenching twist, Tamryn also lost all expression in her young face, leaving her mom and dad to pray their daughter was not suffering. After a courageous and difficult battle, Tamryn’s young life came to an end at just three years of age. For her parents, the pain of losing their beloved daughter will never heal. However, they both take small comfort in the progress being made in genetic research. The extraneous genetic abnormality that caused Tamryn’s “false normal” diagnosis has now been accounted for, and the screening test has been replaced. “Without the knowledge that there are people and researchers who care enough to keep working with affected individuals and their families, and to keep working for cures for these genetic diseases, it would be easy to give up hope,” says Marty. One such Organization is the Canadian Gene Cure Foundation (CGCF) whose Annual fundraiser, Jeans For Genes Day® takes place in schools and workplaces across Canada each October. This year’s goal is to reach $500,000. Jeans For Genes Day is a unique example of how one small day can make a difference in lives of many. And for the Fishman’s, it brings a small amount of hope that it works to save even just one family from the pain of losing a child. “Organizations that fund this type of care and research,” continues Marty, “are providing a lifeline to those families who are unfortunate enough to carry genetic abnormalities that take the lives of their children.”

Article contributed by Dr. Rob Abbott in collaboration with Marty and Paulette Fishman. Rob Abbott, CEO of the Canadian Genetic Diseases Network and the Canadian Gene Cure Foundation devotes his time and expertise to the annual fundraiser, Jeans For Genes Day®.

There is a Tamryn Fishman Fund that is operated by the Jewish Community Centre's Early Childhood Centre. Information can be found and donations received at the JCC.

I would like to thank Justin for a wonderful donation.

Malcolm