Coping with a child diagnosed with dipd

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Never in my life did i ever think i would be faced with the possibility that my son would never grow up to become a man. We just found out a few weeks ago my 9 year old son has a intrinsic prontine tumor, unable to do a biopsy on it they have considered it to be a malignat stage 4 tumor...at first not knowing anything i thought ok some chemo and radiation and he will be ok. But the more and more i read others stories and information on it the more terrified i become. Very few have lived even 2 years after being diagnosed. I cry and cry everyday and beg god to save him...the more you learn about the possible outcome the harder it is not to lose your faith. I cant imagine my life without him...the possibility of never knowing what he may become as a man...i am so terrified and angry and scared that putting on a brave face in front of him gets harder and harder...he is a very brave little man and is taking it better than we are...i dont know what i would do without him...im fighting inside everyday.

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forhim1122

Woody, I am so so sorry to hear of your baby boy's diagnosis. I just lost my 22 year old son to GBM in September, a 33 month fight from that awful night in urgent care when we thought we were just getting meds for a headache. I know how you feel, the panic to make it all go away. They are our CHILDREN, for God's sake! They should be playing and going to school and planning for parties. The future is suddenly interrupted and it's impossible to imagine different scenarios without him. People would ask, how can you be so strong? I am not strong, I would ACT strong so my son didn't see me lose faith in his future. And I'd fall apart on a daily basis when I'd sneak a few minutes away from his side. All is not lost, the odds are not good but there are odds. Think of the parents that lose their children in a car accident, they are just GONE In an instant. So, your son is still here. Fight the fight and take him places he loves to go! Call make-a-wish and plan a wonderful time somewhere. And plan lots of dinners with friends and family, celebrations and other fun things to keep the calendar full. He's a little boy. Make it fun. I'm so sorry.

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tmfaubus
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http://www.dipg.net/

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siblingof
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Have you looked into St. Jude's? I know that they have had at least one long-term survival case of DIPG, and the child is still doing well. They also house the parents and treat the uninsured for free, is my understanding.

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Woody679

I just want to know its been almost a year and all his MRI s have come out with no tumor at all god loves his children so far we have been so blessed

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Woody679

I've been blesses that over the past year the radiation seems to have worked still no sign of his tumor just have to keep praying it stays that way I've been blessed with a aecond chance with my son

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siblingof
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