More than 50 families (that we know of) have been shattered this year. More than 50 kids have been lifted up from dipg alone.
I won't go into a rant about what's not being done to stop this disease from killing our children; mostly because it takes too much energy and energy isn't something that is in great abundance.
Instead, I will offer my heartfelt sympathy to those families who face a new year without their child.
27 December 2009
15 November 2009
Indian Summer
It is hard for me to believe that here in North Alabama the windows are open - it is the middle of November, after all. But open, they are. Nikki and Matthew are outside leaf jumping; football is on and I sit updating the website (long overdue and still not complete).
If you are the parent of a child who is added to www.ICouldBeYourChild.org, I am very sorry. Whether your child is currently fighting a diagnosis of some sort or has been added to the Lifted Up page - the battle against any form of childhood cancer is difficult.
There has recently been national media coverage regarding dipg; coverage that is welcome and long overdue. Will it last? I don't know, likely only if there are good ratings. Diffuse intrinsic pontine glioma tends to not have a happy ending, which should make it perfect for most news agencies as they tend to prefer the darker side of the human existance - but mostly the children are overlooked as it is too difficult to imagine.
We are fast approaching the Holydays and there are families who will be "celebrating" this time of year without a certain small body asking for leftover pie for breakfast, peeking in closets or crawling under the tree to get that last present. Please keep these families in your prayers.
If you are the parent of a child who is added to www.ICouldBeYourChild.org, I am very sorry. Whether your child is currently fighting a diagnosis of some sort or has been added to the Lifted Up page - the battle against any form of childhood cancer is difficult.
There has recently been national media coverage regarding dipg; coverage that is welcome and long overdue. Will it last? I don't know, likely only if there are good ratings. Diffuse intrinsic pontine glioma tends to not have a happy ending, which should make it perfect for most news agencies as they tend to prefer the darker side of the human existance - but mostly the children are overlooked as it is too difficult to imagine.
We are fast approaching the Holydays and there are families who will be "celebrating" this time of year without a certain small body asking for leftover pie for breakfast, peeking in closets or crawling under the tree to get that last present. Please keep these families in your prayers.
19 August 2009
Summertime is...
...almost over.
September is fast approaching, bringing with it Childhood Cancer Awareness Month. It's time to Get Your Gold On. Team Unite has put together a line of Gold Gear to help remind the world that the fight to save our future is still on - our children, more precious than gold.
Because there is no end to this battle in sight, it is a fight which can drain physical and emotional energies. When you know how long something will last (a race for example) you can pace yourself to maintain your strength and when that finish line is just around the corner you can reach a little bit further inside and GO!
The race for a cure doesn't offer mile markers - so you try and pace yourself, but you can still only go for so long. You reach for a little bit more to make it through this day or that night finding that there's nothing left. You sit down, but that doesn't get you any further, so you stand back up, plodding along, hoping...for a medical breakthru...that no other family has to hear the words - "Your child has..."...that no other family has to say the words - "DNR"...hoping...for this nightmare to be over...but it's not.
It's not over...yet. Which is why what each of us does is so important - raising awareness - offering a shoulder - showing up with a cup of coffee - funding clinical trials.
This September the awareness net is being cast in the northeast. Scranton, PA will be hosting a walk held by Aimee's Army. Nashua, NH will have a locally organized duathalon which will benefit ICBYC. If you are in either of those areas or want to be for the day, stop on by - show up with a cup of coffee and be with people who want the nightmare to be over.
Derric, Joshua and Assiyah have all finished their races; Andrew, Ashani and "Ing" are still in theirs. There is no way of knowing when the cure will come along - we just have to keep going until it shows up.
September is fast approaching, bringing with it Childhood Cancer Awareness Month. It's time to Get Your Gold On. Team Unite has put together a line of Gold Gear to help remind the world that the fight to save our future is still on - our children, more precious than gold.
Because there is no end to this battle in sight, it is a fight which can drain physical and emotional energies. When you know how long something will last (a race for example) you can pace yourself to maintain your strength and when that finish line is just around the corner you can reach a little bit further inside and GO!
The race for a cure doesn't offer mile markers - so you try and pace yourself, but you can still only go for so long. You reach for a little bit more to make it through this day or that night finding that there's nothing left. You sit down, but that doesn't get you any further, so you stand back up, plodding along, hoping...for a medical breakthru...that no other family has to hear the words - "Your child has..."...that no other family has to say the words - "DNR"...hoping...for this nightmare to be over...but it's not.
It's not over...yet. Which is why what each of us does is so important - raising awareness - offering a shoulder - showing up with a cup of coffee - funding clinical trials.
This September the awareness net is being cast in the northeast. Scranton, PA will be hosting a walk held by Aimee's Army. Nashua, NH will have a locally organized duathalon which will benefit ICBYC. If you are in either of those areas or want to be for the day, stop on by - show up with a cup of coffee and be with people who want the nightmare to be over.
Derric, Joshua and Assiyah have all finished their races; Andrew, Ashani and "Ing" are still in theirs. There is no way of knowing when the cure will come along - we just have to keep going until it shows up.
11 July 2009
Let Freedom Ring
Mel Gibson's movie Braveheart tells a story of a man whose greatest wish is freedom - freedom from a political system which has held in its grasp the lives and spirit of an entire country. One of the most memorable lines in the movie is William Wallace's last word - "Freedom!"
The United States was founded for that same purpose - freedom from inequality and lives free to worship as we choose. As a nation, we have fought to ensure that right.
Some of our children are facing a different battle, however, and on Independece Day three were freed from the disease which tried to break their spirits. Caleb Crosby, Kelly-Anne Bouchard and Max Lacewell have been released. They joined Morgan Pritchett and Kira Cundiff, who passed only days before and helped to welcome Zac Talley on the 8th.
These families have just suffered one of the worst losses unimaginable in a parent's life and the entire dipg community grieves with them.
The United States was founded for that same purpose - freedom from inequality and lives free to worship as we choose. As a nation, we have fought to ensure that right.
Some of our children are facing a different battle, however, and on Independece Day three were freed from the disease which tried to break their spirits. Caleb Crosby, Kelly-Anne Bouchard and Max Lacewell have been released. They joined Morgan Pritchett and Kira Cundiff, who passed only days before and helped to welcome Zac Talley on the 8th.
These families have just suffered one of the worst losses unimaginable in a parent's life and the entire dipg community grieves with them.
25 June 2009
I Hate This Disease
Everytime I read of another child who has been diagnosed with dipg, or see a picture of another child who has to rely on steroids for relief from swelling or hear of one more family who will no longer be able to tuck their child in at night, touching their cheek, stroking their hair, giving one more kiss before entrusting each precious gift to angels for safekeeping during the night - I hate.
"I hate..." is a phrase we try not to use - it's ugly. I seem to reserve it for steroids and dipg.
I hate what diffuse intrinsic pontine glioma does to children, robbing them of so much that is child. Running thru sprinklers, riding a bike, coloring, saying "I love you". I hate what it does to families, robbing them of a precious child. Stealing away a lifetime and changing countless others.
Liam, Tanea, Luke, CJ and just hours ago, Sadie - they have left behind them parents, brothers, sisters, family, friends, a world now less because they are gone, but so much better for them having been here at all.
"I hate..." is a phrase we try not to use - it's ugly. I seem to reserve it for steroids and dipg.
I hate what diffuse intrinsic pontine glioma does to children, robbing them of so much that is child. Running thru sprinklers, riding a bike, coloring, saying "I love you". I hate what it does to families, robbing them of a precious child. Stealing away a lifetime and changing countless others.
Liam, Tanea, Luke, CJ and just hours ago, Sadie - they have left behind them parents, brothers, sisters, family, friends, a world now less because they are gone, but so much better for them having been here at all.
11 April 2009
Fashion
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.
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.
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.
25 March 2009
Medical Advisor
I Could Be Your Child is honored and humbled to announce that Dr. Kathy Warren has accepted our invitation as Medical Advisor for the foundation.
Dr. Warren, a pediatric neuro-oncologist, is well-known in the dipg community as she focuses much of her time and effort to treat children diagnosed with diffuse intrinsic pontine glioma as well as conducting research aimed at increasing knowledge about the disease.
Dr. Warren, a pediatric neuro-oncologist, is well-known in the dipg community as she focuses much of her time and effort to treat children diagnosed with diffuse intrinsic pontine glioma as well as conducting research aimed at increasing knowledge about the disease.
17 March 2009
Cheyenne
As is all too often the case, when there is an update on either this blog or the parent site, www.ICouldBeYourChild.org, there is either a new child in the dipg community or a new child in Heaven. Cheyenne Broswell has returned Home. As you go thru your day, if you feel the call to provide anyone a positive word, any of these families would love to hear it. Cheyenne is one of few children who has made it past two years - she almost made five from diagnosis (which is incredible for these kids).
Our family walks in this dipg world, even tho our JJ has gone Home, the little boosts of support we continue to receive - from friends and "strangers" alike lift us up. In that spirit, I direct you to Matthew McGowan's page, http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=matthewmcgowan, today is Matthew's 2nd Re-Birthday. The lives that he continues to touch span the globe.
The Giving Doll (found on the Events page) now has its own website, www.thegivingdoll.org.
Our family walks in this dipg world, even tho our JJ has gone Home, the little boosts of support we continue to receive - from friends and "strangers" alike lift us up. In that spirit, I direct you to Matthew McGowan's page, http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=matthewmcgowan, today is Matthew's 2nd Re-Birthday. The lives that he continues to touch span the globe.
The Giving Doll (found on the Events page) now has its own website, www.thegivingdoll.org.
20 February 2009
Lifted Up - Ian & Ellie
Yesterday was a bad day for the DIPG family. Two of its members, Ian Henderson & Ellie Willaert left their Earthly bodies and have gone Home.
Ian was diagnosed little more than 8 months ago; Ellie about 9 months ago. Both of these precious children as well as Cal Daniel lived in Minnesota.
I know the doctors say that there are no known environmental links, but sometimes you just have to say "Hmmmmm".
Wednesday's website update found me trying to catch up on some of the Other Kids; Fabian, Andrea, Kira, Erica, Brian, Noah, Luke, Jesse, Kelly-Anne and Ben were all added. If you stop by you'll notice that a couple of the pages aren't in English; that's because DIPG isn't an English-speaking disease. Children from all over the world are diagnosed with it and they (generally) each receive the same prognosis - 6 - 12 months. For a 4 year old that next year is 20% of his life. He might make it to Kindergarten. She may not be alive for her first dance recital.
Awareness is the only weapon most of us have against this disease. A disease that robs our children of their right to a future. A future that should include Kindergarten, recess, Christmas.
If you wander by this page please stop by www.icouldbeyourchild.org Get to know the kids whose future has been jepordized by something that noone understands.
Ian was diagnosed little more than 8 months ago; Ellie about 9 months ago. Both of these precious children as well as Cal Daniel lived in Minnesota.
I know the doctors say that there are no known environmental links, but sometimes you just have to say "Hmmmmm".
Wednesday's website update found me trying to catch up on some of the Other Kids; Fabian, Andrea, Kira, Erica, Brian, Noah, Luke, Jesse, Kelly-Anne and Ben were all added. If you stop by you'll notice that a couple of the pages aren't in English; that's because DIPG isn't an English-speaking disease. Children from all over the world are diagnosed with it and they (generally) each receive the same prognosis - 6 - 12 months. For a 4 year old that next year is 20% of his life. He might make it to Kindergarten. She may not be alive for her first dance recital.
Awareness is the only weapon most of us have against this disease. A disease that robs our children of their right to a future. A future that should include Kindergarten, recess, Christmas.
If you wander by this page please stop by www.icouldbeyourchild.org Get to know the kids whose future has been jepordized by something that noone understands.
14 February 2009
Lifted Up - Cal Daniel
Cal Daniel was buried by his family today. On this Valentine's Day they surrendered Cal's body to the Lord - He who loves Cal more than his family could ever imagine. Cal's soul flew to Heaven on the 10th. He knew that Jesus was waiting for him.
There has to be such comfort in that knowledge; that when you can no longer feel the hand that holds yours on Earth you are instead holding the hand of God. As the song says, "Take my hand, precious Lord...lead me Home."
Cal is Home.
There has to be such comfort in that knowledge; that when you can no longer feel the hand that holds yours on Earth you are instead holding the hand of God. As the song says, "Take my hand, precious Lord...lead me Home."
Cal is Home.
09 February 2009
...and so it continues
That's probably a strange title for the first post...but this blog will be an extension of a website that has been in existence (in one name or another) for about 3 years.
http://www.icouldbeyourchild.org/ was born from http://www.jjsmiracle.com/. JJ's Miracle is where our family kept current family members, friends and strangers our son's condition as he battled diffuse intrinsic pontine glioma (dipg) a tumor in the brainstem usually found in children.
As his journey progressed we found that we were not alone with a rare tumor in the world of childhood cancer and "Other Kids" were added to JJ's website. Time passed on and children passed away - they were "Lifted Up" from this disease - usually less than two years from having been diagnosed.
In an effort to keep these families connected I Could Be Your Child was formed. It has become an information portal for parents who are searching. No one site will ever have every bit of information - ICBYC just points the way.
We are trying to raise awareness about the existence of the disease as there is precious little known about the disease itself. At this point, doctors can offer no proven cure to save the lives of these (mostly) 5 - 10 year olds. At this point, doctors can offer no explantion for the cause of dipg.
We are not alone in our efforts. More than 50 organizations are listed on the Foundations page - these are just those started by family members and do not include the regional & national with which you may be more familiar (many of these are also listed there).
What will happen on this blog is a play-by-play of what changes have been made to http://www.icouldbeyourchild.org/.
Today's change involves the Lifting Up of Kyle Roger.
Please stop by ICBYC and have a look around. If you have the time, spend it getting to know some of the kids - I can pretty well guarantee that they will touch your heart.
di
JJ's mom
http://www.icouldbeyourchild.org/ was born from http://www.jjsmiracle.com/. JJ's Miracle is where our family kept current family members, friends and strangers our son's condition as he battled diffuse intrinsic pontine glioma (dipg) a tumor in the brainstem usually found in children.
As his journey progressed we found that we were not alone with a rare tumor in the world of childhood cancer and "Other Kids" were added to JJ's website. Time passed on and children passed away - they were "Lifted Up" from this disease - usually less than two years from having been diagnosed.
In an effort to keep these families connected I Could Be Your Child was formed. It has become an information portal for parents who are searching. No one site will ever have every bit of information - ICBYC just points the way.
We are trying to raise awareness about the existence of the disease as there is precious little known about the disease itself. At this point, doctors can offer no proven cure to save the lives of these (mostly) 5 - 10 year olds. At this point, doctors can offer no explantion for the cause of dipg.
We are not alone in our efforts. More than 50 organizations are listed on the Foundations page - these are just those started by family members and do not include the regional & national with which you may be more familiar (many of these are also listed there).
What will happen on this blog is a play-by-play of what changes have been made to http://www.icouldbeyourchild.org/.
Today's change involves the Lifting Up of Kyle Roger.
Please stop by ICBYC and have a look around. If you have the time, spend it getting to know some of the kids - I can pretty well guarantee that they will touch your heart.
di
JJ's mom
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