Last week was a rather busy one for myself and Darrel's Playground. The 3rd Annual International Neuroblastoma Awareness Week (INAW) ran from June 10-16th, and Darrel's
Playground was proud to serve once again as the Canadian Administrator for the second time. The INAW brings together several organizations from around the world, to combine their time and resources to promote more awareness and understanding about neuroblastoma, and the toll it takes on the families it touches. Over the course of the week, along with facts and medical statistics, many stories were shared on our Facebook Page and on Twitter. Behind all the numbers and often too politically correct rhetoric, real people retelling what they have experienced is what created the greatest impact, and what the week is really about. There were tales of countless long, brave and heroic battles against this disease. While some ended in personal triumphs, far too often they concluded with the tragic loss of a loved one.
Our hope is that when someone tries to tell you in the future that neuroblastoma and childhood cancer are rare, and that the medical community has matters under control, you reflect back
on some of the faces and the names of the children, and the stories and statistics you had seen and heard over the INAW. Progress IS being made, but we are far from declaring victory...and equally far from declaring defeat! Our fight against neuroblastoma did not end at the conclusion of the Awareness Week, and we hope that yours does not either. Putting the spotlight on neuroblastoma for one week a year will not alone bring about massive changes in
government policy towards funding and/or public perception, but it is an important step on the journey of finding a sustainable cure. We all appreciated everyone who joined with us, and will help continue the fight against neuroblastoma. Our Children Deserve Better...Our Children Deserve A Cure!
*************************
On June 14-15th, Team Darrel participated in the local Canadian Cancer Society's Relay for Life for the sixth time. This year marked the 10th Anniversary for the event being held in Fergus, so there was a constant stream of ceremonies and activities taking place over the entire night (and into the very early morning as well). The lighting of the Luminaries is always one the most emotional and significant parts for me. Seeing the track almost come alive in the beautiful glow that the luminaries provide is a moment that never ceases to get me. While some teams like to collect all the luminaries of their loved ones, and move them closer to their individual campsites, I prefer to leave ones purchased for Darrel scattered around the track course. The organizers try to space them out relatively evenly, and moving them around will often leave gapping holes as the night progresses. Besides, I'd rather see Darrel's name flickering here, there, and everywhere, rather than in just one central location. It's a personal decision, and one that I am happy with.
Through the generous donations of family, friends, and supporters from far and wide, Team Darrel raised $1,735.00 for the Canadian Cancer Society this year. This brings our six year total to an impressive $14,939.00!!! Additional money was also brought in for The James Fund for Neuroblastoma Research, and for Streaks for Cancer. The official total for the Fergus Relay as a whole isn't available yet, but it is estimated to be around the $65,000 mark!! Big thanks goes out to all our sponsors, Jen and everyone on the Fergus Relay for Life Committee, and all the family and friends who stopped by with words of encouragement and/or treats to keep us on the move.
Team Darrel 2013: Stephen Robb, Kira Robb, Lauren Robb, John Robb, Helen Robb,
Bryan Robb, Janet Willfang, Sharon Snider, and Tala Jenkins
*************************
Earlier this month, "Sharing Hope", a book from our friends at Ontario Parents Advocating for Children with Cancer (OPACC) and the Smiling Eyes Project was published. It features
photographs and brief stories of some of the many families, including ours, touched by childhood cancer in Ontario. We were fortunate enough to be one of the first families to take part in the Smiling Eyes Project back in 2007, and several of the pictures found on this website came from that Photo Shoot. Both the weather and all three of our children co-operated perfectly on that day, allowing to have the last family pictures of the five of us together. They will always be treasured.
For those that are interested, copies of "Sharing Hope" can be purchased for $20.00 from the OPACC website at:
http://www.opacc.org/index.php?p=Sharing_hope
*************************
I was on Holidays last week, so there were many things that needed to be done around the house. One of these tasks was cleaning out our outside shed. It was long overdue, and I
had to make several trips (back hatch of the Jeep does not hold that much) to the Dump to get rid of the unwanted items that had collected in there. When time came to re-organize the remaining things going back into the shed, it was decided to get rid of Darrel's green bike. After I put it to the curb, it wasn't there for more than 5 minutes before the family that lives behind us came walking by, and took the bike for their young son. The bike had been a gift from us for Darrel's 7th, and as fate would have it, last birthday in May 2007. He only got to use it once or twice, and for a very short distance before his body could not take that kind of physical activity any longer.
I did not really have much of a problem getting rid of this particular thing of Darrel's, as there were so few memories of him attached with the bike. I am glad that it will be finally used again, but may feel different in the future, seeing someone else flying by our house on (what was) Darrel's bike. On the other hand, his orange and black bike still sits in the back of the shed, with his helmet hanging on the handle bars...waiting to go out for another spin, but this will never happen. Darrel loved riding this bike around, and was quite the Speed "Dermon" (my father accidentally said 'dermon' instead of 'demon' once, and it the phrase stuck...even until today). Whether it be just around the house, following the trail out to Belwood Lake, or
zipping around the Pinery Provincial Park at Grand Bend, he would zoom by you as fast as his legs would pump...and sometimes he would be traveling even faster than that!
We still do hold on to many Darrel's things, some out in the open, while much has been put away for safe keeping. It would be impossible for any of us to not see reflections of Darrel throughout the only home he ever had, but we also don't want to over-power any company we have over, or ourselves for that matter, with too many reminders of those days, and the conflicting emotions that go along with them.
*************************
Stait Park Update: On June 15th, excavation and construction began on the renovation of Stait Park here in Fergus. The transformation of the park into the first fully accessible and barrier free playground in Centre Wellington is now well underway. Thank You once again to all who donated, supported our fundraising efforts to have Darrel's name included on the Park's new signage as a Bronze Level Sponsor. I'll do my best to post further updates as the journey to
completion of the project continues.
*************************
And finally, I am pleased to report that the Darrel's Playground website reached and surpassed the 10,000 Hit Mark on June 16th, 2013. The fact that this milestone happened on both
Father's Day and International Neuroblastoma Awareness Day adds a bit something extra for me too. While Darrel wasn't able to be physically here with me on what should be happy time, this was a pleasant surprise for me to wake up to all the same. Being the last day of INAW, I also had the opportunity to share this date with the over 4,000 people that Liked our page. People from around the world Liking my Posts may seem selfish and self-serving, but it gave me a little boost to get through what can be an emotional day for me, and other fathers who have lost their children, regardless of the cause.
Thanks Again for Your Support
Together Towards A Cure
Playground was proud to serve once again as the Canadian Administrator for the second time. The INAW brings together several organizations from around the world, to combine their time and resources to promote more awareness and understanding about neuroblastoma, and the toll it takes on the families it touches. Over the course of the week, along with facts and medical statistics, many stories were shared on our Facebook Page and on Twitter. Behind all the numbers and often too politically correct rhetoric, real people retelling what they have experienced is what created the greatest impact, and what the week is really about. There were tales of countless long, brave and heroic battles against this disease. While some ended in personal triumphs, far too often they concluded with the tragic loss of a loved one.
Our hope is that when someone tries to tell you in the future that neuroblastoma and childhood cancer are rare, and that the medical community has matters under control, you reflect back
on some of the faces and the names of the children, and the stories and statistics you had seen and heard over the INAW. Progress IS being made, but we are far from declaring victory...and equally far from declaring defeat! Our fight against neuroblastoma did not end at the conclusion of the Awareness Week, and we hope that yours does not either. Putting the spotlight on neuroblastoma for one week a year will not alone bring about massive changes in
government policy towards funding and/or public perception, but it is an important step on the journey of finding a sustainable cure. We all appreciated everyone who joined with us, and will help continue the fight against neuroblastoma. Our Children Deserve Better...Our Children Deserve A Cure!
*************************
On June 14-15th, Team Darrel participated in the local Canadian Cancer Society's Relay for Life for the sixth time. This year marked the 10th Anniversary for the event being held in Fergus, so there was a constant stream of ceremonies and activities taking place over the entire night (and into the very early morning as well). The lighting of the Luminaries is always one the most emotional and significant parts for me. Seeing the track almost come alive in the beautiful glow that the luminaries provide is a moment that never ceases to get me. While some teams like to collect all the luminaries of their loved ones, and move them closer to their individual campsites, I prefer to leave ones purchased for Darrel scattered around the track course. The organizers try to space them out relatively evenly, and moving them around will often leave gapping holes as the night progresses. Besides, I'd rather see Darrel's name flickering here, there, and everywhere, rather than in just one central location. It's a personal decision, and one that I am happy with.
Through the generous donations of family, friends, and supporters from far and wide, Team Darrel raised $1,735.00 for the Canadian Cancer Society this year. This brings our six year total to an impressive $14,939.00!!! Additional money was also brought in for The James Fund for Neuroblastoma Research, and for Streaks for Cancer. The official total for the Fergus Relay as a whole isn't available yet, but it is estimated to be around the $65,000 mark!! Big thanks goes out to all our sponsors, Jen and everyone on the Fergus Relay for Life Committee, and all the family and friends who stopped by with words of encouragement and/or treats to keep us on the move.
Team Darrel 2013: Stephen Robb, Kira Robb, Lauren Robb, John Robb, Helen Robb,
Bryan Robb, Janet Willfang, Sharon Snider, and Tala Jenkins
*************************
Earlier this month, "Sharing Hope", a book from our friends at Ontario Parents Advocating for Children with Cancer (OPACC) and the Smiling Eyes Project was published. It features
photographs and brief stories of some of the many families, including ours, touched by childhood cancer in Ontario. We were fortunate enough to be one of the first families to take part in the Smiling Eyes Project back in 2007, and several of the pictures found on this website came from that Photo Shoot. Both the weather and all three of our children co-operated perfectly on that day, allowing to have the last family pictures of the five of us together. They will always be treasured.
For those that are interested, copies of "Sharing Hope" can be purchased for $20.00 from the OPACC website at:
http://www.opacc.org/index.php?p=Sharing_hope
*************************
I was on Holidays last week, so there were many things that needed to be done around the house. One of these tasks was cleaning out our outside shed. It was long overdue, and I
had to make several trips (back hatch of the Jeep does not hold that much) to the Dump to get rid of the unwanted items that had collected in there. When time came to re-organize the remaining things going back into the shed, it was decided to get rid of Darrel's green bike. After I put it to the curb, it wasn't there for more than 5 minutes before the family that lives behind us came walking by, and took the bike for their young son. The bike had been a gift from us for Darrel's 7th, and as fate would have it, last birthday in May 2007. He only got to use it once or twice, and for a very short distance before his body could not take that kind of physical activity any longer.
I did not really have much of a problem getting rid of this particular thing of Darrel's, as there were so few memories of him attached with the bike. I am glad that it will be finally used again, but may feel different in the future, seeing someone else flying by our house on (what was) Darrel's bike. On the other hand, his orange and black bike still sits in the back of the shed, with his helmet hanging on the handle bars...waiting to go out for another spin, but this will never happen. Darrel loved riding this bike around, and was quite the Speed "Dermon" (my father accidentally said 'dermon' instead of 'demon' once, and it the phrase stuck...even until today). Whether it be just around the house, following the trail out to Belwood Lake, or
zipping around the Pinery Provincial Park at Grand Bend, he would zoom by you as fast as his legs would pump...and sometimes he would be traveling even faster than that!
We still do hold on to many Darrel's things, some out in the open, while much has been put away for safe keeping. It would be impossible for any of us to not see reflections of Darrel throughout the only home he ever had, but we also don't want to over-power any company we have over, or ourselves for that matter, with too many reminders of those days, and the conflicting emotions that go along with them.
*************************
Stait Park Update: On June 15th, excavation and construction began on the renovation of Stait Park here in Fergus. The transformation of the park into the first fully accessible and barrier free playground in Centre Wellington is now well underway. Thank You once again to all who donated, supported our fundraising efforts to have Darrel's name included on the Park's new signage as a Bronze Level Sponsor. I'll do my best to post further updates as the journey to
completion of the project continues.
*************************
And finally, I am pleased to report that the Darrel's Playground website reached and surpassed the 10,000 Hit Mark on June 16th, 2013. The fact that this milestone happened on both
Father's Day and International Neuroblastoma Awareness Day adds a bit something extra for me too. While Darrel wasn't able to be physically here with me on what should be happy time, this was a pleasant surprise for me to wake up to all the same. Being the last day of INAW, I also had the opportunity to share this date with the over 4,000 people that Liked our page. People from around the world Liking my Posts may seem selfish and self-serving, but it gave me a little boost to get through what can be an emotional day for me, and other fathers who have lost their children, regardless of the cause.
Thanks Again for Your Support
Together Towards A Cure
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