My 5yr old with Diffuse Pontine Glioma

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My 5yr old with Diffuse Pontine Glioma

by huggs4Kennedy on Thu Jan 05, 2012 04:16 PM

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Well for such a tragic word like cancer, i for one have never heard of Diffuse Pontine Glioma untill my little girl was diagnoised.  We as parents in situations has taken our children for granted, i admitt it as well as others i have had conversations with.  That day of taking my kids for granted have come to an end, unfortunatly that day started when my little girl was diagnoised with this deadly desease.  I have heard that a nature o path is the way to go.  As far as i am concerned without knowing anything about the natural remedies, i indeed have nothing to lose.  We are losing a little of the fight everyday, so if i only have a certain amount of time, i see this as a no lose situation.  If it works I get my family back, especially my little girl.  If it does not work...... well we know whats going to happen anyways.  It is a risk I and my family is willing to take.  Climb aboard the natural remedy train.  We have yet to start the process, but will start within a week of this report.  Any additional information anyone can give regarding this deadly cancer diagnosis, would be welcome with open arms and a little girls smile is all i am interested in, just a smile to see the rest of my life.  Thanks again

RE: My 5yr old with Diffuse Pontine Glioma

by ohd1974 on Thu Jan 05, 2012 06:54 PM

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I am sorry, I can't help you in the natural remedy department, but your story brought tears to my eyes and I just want to give you and your little girl big HUGS!

RE: My 5yr old with Diffuse Pontine Glioma

by tmfaubus on Fri Jan 06, 2012 12:23 AM

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I am 45 and was diagnosed 9/01/10 with a DIPG. I did radiation, and temodar, both with out much luck. I am now on carboplatin and avastin and my first MRI since starting that was good. I can tell you that this effects children differently than adults and has a rather bleak outlook I am sorry to say. There are many sites dedicated to DIPG kids and there are many success stories. My best advice is to find a good neuro oncologist and keep her active and comfortable...God bless you, her, and you family as you embark on this fight...Todd

RE: My 5yr old with Diffuse Pontine Glioma

by kari6613 on Mon Jan 09, 2012 09:59 PM

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How do I began to say what my heart wants? In tears, my heart just aches for you and your family! Cancer is a word that, even myself thought little of, we hear it, we see it in the media, we can even hear our doctors advise us how to try and avoid it, but NOTHING can prepare you to hear that you are faced with it!!! My father was diagnosed    with Glioblastoma Mulitiforme on Aug. 9, 2011, everyday since then has been a roller coaster of emotions and fears for us as a family. I, who am a mother of 3, am dealing with losing my dad and watching life leave him little by little, month by month. I see him fight for energy and fight for a smile and it rips through me. I could not begin to think what I would do if I was forced to watch my child battle through this too..... 

This by no means is to offend you, I only wish to help is some insignificant way, the only way I know how…with God’s word the bible. The only healing that can be done with such a tragedy is spiritual. Having a child is like holding your heart outside your body, nothing can compare, nothing can complete you like parenthood. It is the most fulfilling life course a person can make. The pain from seeing your child suffer hurts more than the heart, it destroys a person mentally, physically, emotionally leaves a person stripped and empty, and lost and cold. I am profoundly sorry…it has moved me. It’s hard to believe that a family that I never met has moved and changed me hurt and devastated me. Through the thousands of messages you have read, all the advice and comfort you have received, and all the empathy and sympathy you constantly get nothing can help heal this void in your aching heart like the bible. I hope that through this message you gain strength, encouragement, and peace. at psalm 83:18 we find that God has a name, many people are unaware of this “you whose name is Jehovah..."the bible tells us if you “keep on seeking" you will find (proverbs 2:1-5) the truth about god, and that he loves you and your family and cares deeply for you (1 peter 5:7) furthermore "GOD is LOVE"(1 John 4:8) the bible shows us that God is just and good, our heavenly father is perfect " far be it from the true God to act wickedly" (JOB 34:10-12) why then? Why would such an inspirational innocent child be ripped from a loving family? The bible helps us to see an explanation (1 John 5:19) “the whole world is lying in the power of the wicked one" Satan the devil. In a world full of violence, sickness, and misery it only makes sense then that Satan is to blame for our sorrows and pain. (Revelation 12:9) again shows that Satan" is misleading the entire inhabited earth" so the world under his influence is full of hatred, deceit, and cruelty. Through Adam’s sin, we all have been born imperfect which causes cruel things like sickness to befall our loved ones, but God promises us a perfect home free from sickness, pain, and imperfections. at Psalm 37:29 “ the righteous themselves will possess the earth, and they will reside forever upon it” we pray for God’s kingdom to come in the famous model prayer that Jesus stated at (Matthew 6:9-13) three petitions were raised by Jesus when he instructed his followers to pray: 1. Let your name be sanctified 2. Let your kingdom come 3. Let your will take place as in heaven, also upon earth. These important requests help us to see Jehovah’s purpose for the earth and mankind. Your little baby is not forgotten, or the fight that she fighting Jehovah remembers every tear you have cried and the pain she went through and promises a life full of peace and happiness to come. She will be free of sickness(Isaiah 33:24), she will be able to run with a wolf and cuddle with any animal (Isaiah 11-6-9), and immeasurable peace (Isaiah 2:4). Nothing can take away your pain, but hang in there a lot of people are rooting for you!

Kari B

RE: My 5yr old with Diffuse Pontine Glioma

by Woody679 on Wed Jan 11, 2012 02:23 PM

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My 9 year old son was just diagnosed with dipg and has just started radiation. I am angry, terrified, and afraid after getting his chance of survival rate. Im not ready to let him go. Im gonna fight this to the end. If anyone has a success story please let me know what you did to go up against such horrifying odds...it would be beyond appreciated. My email address is

Message edited by CancerCompass staff. For personal protection,email address removed. Consider private reply. Please review CancerCompass Member Guidelines athttp://www.cancercompass.com/common/guidelines.html 

RE: My 5yr old with Diffuse Pontine Glioma

by CarmensWife on Wed Jan 11, 2012 02:46 PM

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BOTH OF THE PARENTS:

I am praying for both of you with children facing this monster.. I lost my husband 5.5 months ago... But Im here to read and help, and look things up or lend an ear, 9 year old son... Id be damned pissed off too.  I also did not want to know survival rates, that hit a cord with me when you said that... survival rates are scary to hear, plus... someone has to be the one who makes it? why not you????   why not me????   SOMEONE DOES.. PEOPLE, CHILDREN DO! but we need to live in today, and do what we can RIGHT NOW... and sadly besides loving, doing research and praying and holding each other up... that is the question!!!   This site is getting more and more parents on here... Its killing me.

Im a long timer on this website... I think we have seen and heard it all... no way.. each family is unique and different.. one thing thats all the same... WE ALL HAVE BROKEN HEARTS.

Linda/ wife of Carmen... not... until death do we part, Im still with you honey

RE: My 5yr old with Diffuse Pontine Glioma

by Woody679 on Wed Jan 11, 2012 03:05 PM

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Everyday i wish i can take his place. He is to young and innocent to be taken away now, i cant picture my life withou him in it and growing up to be a man with children of his own...i do alot of praying asking god to cure him...i have to be brave for him and at night all i do is cry and plead for his life...no parent should ever have to feel this way...i am so scared of losing my baby i dont know what to do how to feel or how to act...

RE: My 5yr old with Diffuse Pontine Glioma

by momto3gsds on Wed Jan 11, 2012 05:44 PM

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I am so very, very sorry.  My thoughts and prayers are with you and your little girl as well as with the others going through this. 

Rosa

RE: My 5yr old with Diffuse Pontine Glioma

by Woody679 on Mon Nov 19, 2012 06:45 AM

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It's bee almost a year and all his MRI s show no sign of tumor thank you god for answering our prayers and giving my lil man another chance
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