High Strung Beads has created a bracelet and earrings for Brain Tumor Awareness. Combining gray pearls and pewter they make a very powerful and beautiful statement of support for a type of disease that all too often goes overlooked. A percentage of the purchase price has been generously offered to I Could Be Your Child - we are honored that of all the worthy brain tumor organizations, ICBYC was selected. (If gray isn't your color - don't worry - Sue has more.)
There are, unfortunately, always children in this dipg community who aren't having the easiest of times right now. Some are having to change medications or are being told there are no more medical choices for them. Please stop by and offer the children and their families some words of encouragement. I can assure you that even when you don't know the person on the other end of the computer, reading the support that is offered so freely can make a really miserable day bearable.
11 April 2009
07 April 2009
I'm Wearing Gray...
There is a lack in the world (at large) - a lack of awareness that our world (childhood cancer/pediatric brain tumors) even exists.
In response to a question about childhood cancer I would guess that many people would say something like, "Luekemia - yeah - St. Jude's cured that, right?" Um, no.
Everyone who has been touched by any of these beasts (or anything else that puts our children in peril) wants there to be an end to ________. Each family works against disease in their own way. One may find out if this has been common in their family and stay more vigilant, another may find themselves able to walk across the country - raising money and awareness, yet another may know someone who knows someone who can do whatever. Whatever method we choose to fight is just like the way we, as caregivers, choose treatments - the way that is best for our families.
Fundraisers, flyers, websites, radio/television - all of these are working toward the same goal - an end to ____________. The way we get to the end doesn't really matter - this isn't algebra class where the work you show to get to the answer is half your grade - the end answer actually IS the point. For our family, and many others, __________ is dipg, diffuse intrinsic pontine glioma. We have chosen primarily to use the web as a method of relaying information, links to others who have different/more information and linking the families with each other.
Just because dipg is the focus of I Could Be Your Child, it doesn't prevent us from including children or organizations that have a different disease to attack. By working together (directly or indirectly) we will all reach our common goal.
Heidi Randall, Jessica's mom, has worked to create a line of brain tumor awareness items - MAY GEAR. (May is brain tumor awareness month.) She has included children with an assortment of diagnoses and created an "I'm Wearing Gray For..." line available thru CafePress. Please pop over and pick up some gray as she will be donating proceeds to a handful of organizations (and no, ICBYC isn't one of them - so this isn't a roundabout commercial for us.) We just admire what she does and are doing what we can to help her do what she does.
Because of the efforts of so many - parents, siblings, survivors, medical types, anyone who does anything to support these kids - one day there won't be a post telling you that a little boy, Tyler Marx for example, was lifted up on Palm Sunday.
In response to a question about childhood cancer I would guess that many people would say something like, "Luekemia - yeah - St. Jude's cured that, right?" Um, no.
Everyone who has been touched by any of these beasts (or anything else that puts our children in peril) wants there to be an end to ________. Each family works against disease in their own way. One may find out if this has been common in their family and stay more vigilant, another may find themselves able to walk across the country - raising money and awareness, yet another may know someone who knows someone who can do whatever. Whatever method we choose to fight is just like the way we, as caregivers, choose treatments - the way that is best for our families.
Fundraisers, flyers, websites, radio/television - all of these are working toward the same goal - an end to ____________. The way we get to the end doesn't really matter - this isn't algebra class where the work you show to get to the answer is half your grade - the end answer actually IS the point. For our family, and many others, __________ is dipg, diffuse intrinsic pontine glioma. We have chosen primarily to use the web as a method of relaying information, links to others who have different/more information and linking the families with each other.
Just because dipg is the focus of I Could Be Your Child, it doesn't prevent us from including children or organizations that have a different disease to attack. By working together (directly or indirectly) we will all reach our common goal.
Heidi Randall, Jessica's mom, has worked to create a line of brain tumor awareness items - MAY GEAR. (May is brain tumor awareness month.) She has included children with an assortment of diagnoses and created an "I'm Wearing Gray For..." line available thru CafePress. Please pop over and pick up some gray as she will be donating proceeds to a handful of organizations (and no, ICBYC isn't one of them - so this isn't a roundabout commercial for us.) We just admire what she does and are doing what we can to help her do what she does.
Because of the efforts of so many - parents, siblings, survivors, medical types, anyone who does anything to support these kids - one day there won't be a post telling you that a little boy, Tyler Marx for example, was lifted up on Palm Sunday.
02 April 2009
Where To Start?
This has been another difficult week in the dipg community.
Eric Kelly went Home on the 28th of March and this morning he was joined by Brian Jones. There will always be a void in the homes of these boys.
A website has been added for Gunner Shultz (May 07) as well as the foundation set up in his memory.
Although Alicia Garcia (Nov 07) doesn't have a website, the picture provided by her mother makes it very clear just how young and precious each of these children are.
Samuel and Ella's pages have been added to the Other Kids page - and it is our hope that a cure is found before another child's life is taken.
All of these children show a strength and grace that is so often not visible in adults and we can learn so much from them: the joy of living each day as it comes, comfort in the knowledge that they are loved & a peace that comes from being so close to their God.
I remain convinced that they know the voice of God and receive His assurances constantly in their hearts. I have read of dipg kids who see His angels and I am comforted in this knowledge. The differences in each family's faith (religion) matter not as it is the Faith that each family gives their children that sustains them all.
Eric Kelly went Home on the 28th of March and this morning he was joined by Brian Jones. There will always be a void in the homes of these boys.
A website has been added for Gunner Shultz (May 07) as well as the foundation set up in his memory.
Although Alicia Garcia (Nov 07) doesn't have a website, the picture provided by her mother makes it very clear just how young and precious each of these children are.
Samuel and Ella's pages have been added to the Other Kids page - and it is our hope that a cure is found before another child's life is taken.
All of these children show a strength and grace that is so often not visible in adults and we can learn so much from them: the joy of living each day as it comes, comfort in the knowledge that they are loved & a peace that comes from being so close to their God.
I remain convinced that they know the voice of God and receive His assurances constantly in their hearts. I have read of dipg kids who see His angels and I am comforted in this knowledge. The differences in each family's faith (religion) matter not as it is the Faith that each family gives their children that sustains them all.
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