My 5 yr. old boy was recently diagnosed with a Pontine Glioma..

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My 5 yr. old boy was recently diagnosed with a Pontine Glioma..

by Dalya on Wed Sep 15, 2010 09:42 AM

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Two months ago our little Michael was diagnosed with a tumor located in the brain stem. My husband and I are devastated and are searching for any hope anyone can offer.  Michael underwent radiation and we are yet to find out if a miracle will occur.  He'll have an MRI done in two days to see the results. Chemo is being considered yet the Drs state this will not change the outcome.  We've done researh in the internet and every single article we read is discouraging.. Please, if anyone has any useful information, we will be forever grateful.

RE: My 5 yr. old boy was recently diagnosed with a Pontine Glioma..

by hopen on Wed Sep 15, 2010 12:46 PM

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I don't know anything about brain cancer....I just wanted to tell you how sorry I am that your little boy has cancer.  I can't even imagine what you are going through.  My prayers will be with you and your family....

Heritage_Softail Heritage_Softai...
(Inactive)

RE: My 5 yr. old boy was recently diagnosed with a Pontine Glioma..

by Heritage_Softail on Wed Sep 15, 2010 02:56 PM

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Dalya,

I have posted a link in regards to Michael's cancer. These are the current clinical trials going on.

http://clinicaltrials.gov/ct2/results?term=Pontine+Glioma

Your reaction to search the internet is understood as we all have done this at one point. I know this can be discouraging but please also not the data is usually based on a overall case. Meaning old mixed with the new. We are all in this together.

Damon

Dx Nov 07

RE: My 5 yr. old boy was recently diagnosed with a Pontine Glioma..

by Oncrx on Wed Sep 15, 2010 03:20 PM

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sorry about your son.  The BSG 98 trial did show a significant increase in survival.  This involves chemotherapy prior to radiation. 

RE: My 5 yr. old boy was recently diagnosed with a Pontine Glioma..

by DIPGMom on Wed Sep 15, 2010 10:13 PM

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Dalya,

I'm sorry to hear about Michael's diagnosis.  I know from experience that your lives have changed drastically.  You will never be the same.  Something like this--no matter the outcome--changes  you forever.

My son was diagnosed with diffuse intrinsic pontine glioma in October 2007 and lived 25 months from diagnosis.  (He died in December 2009.)  I know this is difficult for you to read. 

If you would like to connect with other families who understand your situation from personal experience, there is a Yahoo Health Group called DIPG.  The purpose of the group is to provide accurate information and support for families whose children have been diagnosed with diffuse intrinsic pontine glioma.

What you have been told by Michael's doctors sounds familiar.  Chemotherapy has not been proven to change the outcome for children with DIPG.  Some families use chemotherapy, along with radiation anyway.  Some families choose to use chemotherapy in an attempt for stability when the tumor begins to grow again.  Some families choose not to use chemotherapy at all.  We used chemotherapy (three different regimens) when our son's tumor began to grow again.  We believe it gave us an extra year; however, this is not typical.

There are some newer clinical trials that you may want to consider.  I'm not sure where you are located, so I don't know what--if anything--would  be convenient to you.

Please, feel free to ask specific questions.  

I'm sorry that you are dealing with this difficult diagnosis.  I do want you to know that there are survivors.  So even though the prognosis is bleak, there are some children who have beaten the odds.  Unfortunately there is nothing common to those children.  But I always chose to believe that there was no reason my son should not be one of them. 

So in spite of the difficulties we faced, we chose to live with hope.  I hope you can find a way to do this. 

 

 

 

 

RE: My 5 yr. old boy was recently diagnosed with a Pontine Glioma..

by Dalya on Fri Sep 17, 2010 09:13 AM

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On Sep 15, 2010 12:46 PM hopen wrote:

I don't know anything about brain cancer....I just wanted to tell you how sorry I am that your little boy has cancer.  I can't even imagine what you are going through.  My prayers will be with you and your family....

Thank you Hopen, God Bless.

RE: My 5 yr. old boy was recently diagnosed with a Pontine Glioma..

by Dalya on Fri Sep 17, 2010 09:16 AM

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On Sep 15, 2010 2:56 PM Heritage_Softail wrote:

Dalya,

I have posted a link in regards to Michael's cancer. These are the current clinical trials going on.

http://clinicaltrials.gov/ct2/results?term=Pontine+Glioma

Your reaction to search the internet is understood as we all have done this at one point. I know this can be discouraging but please also not the data is usually based on a overall case. Meaning old mixed with the new. We are all in this together.

Damon

Dx Nov 07

Thank you Damon.. I've been searching for information about clinical trials and could not find anything reliable yet the page you posted is very interesting.. I'll print a copy and consult it with Michael's doctor..  Thanks again for your kind words and concern.. God Bless!

RE: My 5 yr. old boy was recently diagnosed with a Pontine Glioma..

by Dalya on Fri Sep 17, 2010 09:19 AM

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On Sep 15, 2010 3:20 PM Oncrx wrote:

sorry about your son.  The BSG 98 trial did show a significant increase in survival.  This involves chemotherapy prior to radiation. 

Thank you Oncrx, I'm afraid Michael will not be a candidate for this trial since he already had radiation done... He'll actually start chemo in one month.. I still appreciate your help and concern.. A million thanks and blessings for you..

RE: My 5 yr. old boy was recently diagnosed with a Pontine Glioma..

by Dalya on Fri Sep 17, 2010 09:47 AM

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On Sep 15, 2010 10:13 PM DIPGMom wrote:

Dalya,

I'm sorry to hear about Michael's diagnosis.  I know from experience that your lives have changed drastically.  You will never be the same.  Something like this--no matter the outcome--changes  you forever.

My son was diagnosed with diffuse intrinsic pontine glioma in October 2007 and lived 25 months from diagnosis.  (He died in December 2009.)  I know this is difficult for you to read. 

If you would like to connect with other families who understand your situation from personal experience, there is a Yahoo Health Group called DIPG.  The purpose of the group is to provide accurate information and support for families whose children have been diagnosed with diffuse intrinsic pontine glioma.

What you have been told by Michael's doctors sounds familiar.  Chemotherapy has not been proven to change the outcome for children with DIPG.  Some families use chemotherapy, along with radiation anyway.  Some families choose to use chemotherapy in an attempt for stability when the tumor begins to grow again.  Some families choose not to use chemotherapy at all.  We used chemotherapy (three different regimens) when our son's tumor began to grow again.  We believe it gave us an extra year; however, this is not typical.

There are some newer clinical trials that you may want to consider.  I'm not sure where you are located, so I don't know what--if anything--would  be convenient to you.

Please, feel free to ask specific questions.  

I'm sorry that you are dealing with this difficult diagnosis.  I do want you to know that there are survivors.  So even though the prognosis is bleak, there are some children who have beaten the odds.  Unfortunately there is nothing common to those children.  But I always chose to believe that there was no reason my son should not be one of them. 

So in spite of the difficulties we faced, we chose to live with hope.  I hope you can find a way to do this. 

 

 

 

 

Dear DIPGmon,

It feels that I have so much to tell you yet don't know how to express my words.. I am so sorry about your loss.  It breaks my heart to imagine what you're going through.. If it's of some relieve to you, please know I was very comforted by your post, to know that there actually are survivors since we've been told otherwise.. 

Your son in heaven will very proud of you, you are very brave and I admire you because even with the pain of your loss, you find it in your heart to offer comfort to families that are going through what you went through..

Even though I pray day and night for a miracle, I'm also well aware of what the possibilities are. It feels selfish to tell you that I know in my heart my Michael will overcome this and everything will be ok.. It's devastating to know that so many kids have lost their battle to this terrible desease..

I don't understand why, all I know is that while he's here I still have hope.  Michael is our only son and we've devoted our lives to him.  There's probably a lesson to be taught, but for now, I put him in God's hands and hope that a miracle is granted..  

Thanks again for your support.. Please receive a hug from Michael, my husband and me.  God Bless!!

RE: My 5 yr. old boy was recently diagnosed with a Pontine Glioma..

by hipphome on Sun Nov 28, 2010 03:16 AM

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Dear Dayla and DIPGmom,

My 5 year old son was diagnosed with this monster on July 26, 2010.  I am so sorry to hear that we all have this in common.  But at the same time, it is comforting to feel like I can talk to people who know exactly what I am going through.  My son participated in a study at Johns Hopkins where he received arsenic and radiation daily for 6 weeks.  He completed this in mid October.  Prior to being in that study, the head of pediatric neurosurgery there opted to surgically remove a cyst portion of the tumor (Hershey Medical Center opted not to do this sugery prior to us ending up at Hopkins).  The surgery did help with some of his symptoms as did the arsenic and radiation.  He still has some minimal balance issues but can still run and play and use his wii.  Like Dayla and most other parents in our shoes, I feel certain that Nicholas will beat this because I can not imagine any other outcome.  I know the possibilities and the probabilities but I can't live with those odds so I don't.  I mean, they pop into my head and bring me to my knees every few days but I quickly dismiss them and get back into my positive mindset.  I have even turned to trying things that I probably wouldn't have tried with a more curable diagnosis.  I am not sure if you ever heard of the Budwig Diet, but you could look into it, her research is quite compelling.  When I first heard of it, I thought it was too weird but as I read more about her studies and her credentials, I figured that it couldn't do any harm to try it so we now eat organic and healthy and I even make the flax oil/cottage cheese concoction every night for my son (I figured out a way to make it into a lemon ice cream).  Like you both, my world came crashing down instantly.  I smile for people because I know i can't cry all of the time and I also have myself convinced that this will end well so often times the smiles are actually real.  I just continue to depend on God to give all of us this miracle, I tell myself daily that this is a piece of cake for Him and I pray that He gives it to us.  If there is any advice that you could offer or information that you could share, I would greatly appreciate it.  God bless you!!!

Steph

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