Thank you

Today Team Malcolm ran in the Terry Fox Run.  Friends Jen and Lauryn joined us and Grama and Grampa Rainey were there to cheer us on.  Donovan and I ran one loop (3.3 km) with Lauryn, Jen ran two loops and Jan and Malcolm walked a couple of kilometers.  Donovan ran almost the whole loop - what energy!  Lauryn and I were almost outdone by a six year old.  It is a fun event with fresh waffles and other goodies to eat after - what a welcome treat.

We raised over $1,400!  Many thanks to those who donated online, by cheque or cash.  We were very pleased that so many of our family and friends decided to give a little extra to cancer research this year.  We hope to keep doing the event and to raise at least $1,000 each year for ten years - so that we can help contribute at least $10,000 to the cause.  Thank you all for being a part of that and stay tuned for next year!

Mary Ellen

Terry Fox Run 2012

On September 16, Team Malcolm is again participating in the Halifax Terry Fox Run.  After our success last year, we have decided to make it an annual event.  That smiling face you see above has benefited from cancer research and we want others to benefit the same way.  As recently as the 1990s, more kids were being killed than cured from the treatment they received for Malcolm's specific type of cancer.  Research revealed that kids with Down syndrome have a particular sensitivity to the chemo drugs used to kill the disease.  By drastically reducing the doses these kids receive, the survival rate has now increased to upwards of 90% - greater than for any other type of childhood leukemia.  Researchers are now studying the unique characteristics of kids with Ds to try to replicate the same result in all kids.  Research does make a difference.

We support the Terry Fox Foundation as it is a volunteer driven organization that supports research into a broad range of cancers.  This year as we run in honour of Malcolm, we also carry in our hearts family friend Darren and our Uncle Brent, and their families, as they have been journeying through their own experiences with cancer this year.  In addition, we never forget the faces of the other kids who shared Malcolm's journey at the IWK.

We welcome small donations, large donations and expressions of support.  Terry Fox is about hope.  Together we can make a difference.

Mary Ellen

We're Back

Rocket Man

This is a rather late Father's Day post.  Donovan heard about bottle rockets at school and he asked his dad if they could make one.  Jan obliged - he looked up directions on the Internet and then he and Donovan took a field trip that included stops at his lab (for a rubber stopper) and Canadian Tire (for a manual pump).  They built the base and the rocket at home and then took it for a test run.  The bottle is filled partway with water and then air is pumped in until the pressure makes it launch into the air!  Very exciting.  Donovan and Daddy took Malcolm and Mommy out to see it.  Malcolm sat on my lap while the rocket launched and then it was his job to go retrieve the empty bottle, which he did very nicely and then settled in my lap to wait for the next episode.  Too fun!

The last photo shows Malcolm at the playground last weekend with his little basketball - he is getting to be a big boy!

Today was a very damp, cold day but we weathered through family fun day for Malcolm's daycare at a local park for two hours.  Tomorrow it is pirate day down at the waterfront and I am seriously considering breaking our winter coats out of storage...

Mary Ellen

Busy boys

We have been enjoying a great spring here in Halifax - lots of sunshine and dry weather (and don't worry, the occasional rain storm to keep things real...).  You can see the boys having fun together.  They love playing together and especially goofing around.  On Saturday we went to Spring Fling at the school and Donovan refused to go on the bouncy castle, which he had been talking about all week, unless Malcolm went with him.  Luckily Malcolm decided he wanted to try it and had a great time!

A couple of weeks ago I had the boys at the park and we were playing tag on the playground equipment.  Both boys were having a lot of fun (for those of you wondering, Malcolm and I are on the same team and Donovan has a great time climbing and running and generally avoiding getting tagged...Malcolm is getting better and better at climbing on all the equipment as trying to catch up to his brother is a great motivator).  At any rate, there was a Dad there with a little girl who was maybe just three and a baby who was a few months old.  He was sitting on a bench for a little while with the baby watching us play and really enjoying it.  He asked me how far apart my boys were and I said about 2.5 years.  He said the same with his girls.  He went on to say that he couldn't wait till his girls were old enough to play together like my boys and that he hopes they will have as much fun together as my kids.  What a great compliment!  I don't think he realized there was anything unusual about Malcolm (men seem less likely to notice the Ds traits than women) or maybe he did and it didn't matter. 

What a great thing to know that both my boys can be role models for others!

Mary Ellen

Happy Easter!

Summary

I see I've had some new people checking out this blog - likely in response to a comment I posted on the blog written by the awesome father of a sweet little girl. She has just received a very troubling diagnosis - referred to by her dad as the C-word (I can relate - it was months after Malcolm was diagnosed before I could actually say that word in connection with him...). I posted a comment inviting him to check out Malcolm's blog in case she has the same type Malcolm did. For those who are not in the know, a quick summary...

I started this blog when Malcolm began treatment for AML, sometimes called MDS or AMKL, which is a type of leukemia that is much more common among young kids with Down syndrome than "typical" kids. If you go back to my early posts in 2010 you can read all about it. The posts are pretty factual in nature and were intended to keep family and friends in the loop on Malcolm's progress through treatment. His type of leukemia required intensive treatment for about six months. It meant he had to spend most of that time in hospital.

The other major type of leukemia, ALL, is also more common in kids with Ds than without. Treatment for it lasts about 2.5 0 3 years but it is usually primarily outpatient (barring complications). Kids with Ds and AML have a better than average survival rate - a whopping 90%. Kids with Ds and ALL have the same survival rate as all kids - around 70% (but improving all the time with advances in treatment and supportive care).

You can find some blogs of other kids with Ds and AML here - they were a great lifeline to me when I was in with Malcolm. Having your baby diagnosed with a life threatening disease is like nothing I can describe or ever wish to experience again. My thoughts and prayers are with Sarah and her family...

Mary Ellen