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.
02 April 2009
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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