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Thread: Our son's story

  1. #1
    Top User
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    Our son's story

    PO Guy suggested I tell our son's story when I felt up to it so here it is. He is our only child,age 40. He's wonderful. Our son tells his own story in the link below. I thought it might be of some help to others. He just recently had his battery replaced in the transmitter. Our son's tumor was a benign ependymoma tumor they think he was born with. It was wrapped in a membrane that disguised it as a cyst making it grow slowly all those years. It wasn't until it reached a certain size we noticed something was wrong.

    http://www.neuropace.com/davids-story/
    Last edited by Marian333; 06-16-2017 at 08:19 PM.
    Husband has PTCL-NOS......5 rounds of CHOPE chemo. April 27....6 month check up shows NED at this point. No,scans suggested at this time. We are very happy and pray for continued blessings.

    We also have a son, our only child,who was found to have an ependymoma tumor when he was 17. He is now 40 years old and married. He's had 6 brain surgeries, to remove the benign tumor and to try to get the seizure activity which was impossible. He was enrolled in a clinical study to have an experimental neurotransmitter placed. He recently had to have the battery replaced after 6 years. He has not had a seizure in 11 years so far and we are so grateful to God.
    When I am afraid I put my trust in you. Psalms 53:6

    "Hope” is the thing with feathers –
    That perches in the soul
    And sings the tune without the words –
    And never stops – at all –
    Emily Dickinson

  2. #2
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    Great! Thanks, Marian. Could you add something to your comment above ^ just to identify the type of tumor your son has? People newly arrived to this forum are often a bit stressed (!) so it will be helpful to them in sorting out information.

    (I know it's in your sig line but people don't always read those.)

  3. #3
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    Ok, I added it to post. But will again say it was a benign ependymoma tumor.
    Husband has PTCL-NOS......5 rounds of CHOPE chemo. April 27....6 month check up shows NED at this point. No,scans suggested at this time. We are very happy and pray for continued blessings.

    We also have a son, our only child,who was found to have an ependymoma tumor when he was 17. He is now 40 years old and married. He's had 6 brain surgeries, to remove the benign tumor and to try to get the seizure activity which was impossible. He was enrolled in a clinical study to have an experimental neurotransmitter placed. He recently had to have the battery replaced after 6 years. He has not had a seizure in 11 years so far and we are so grateful to God.
    When I am afraid I put my trust in you. Psalms 53:6

    "Hope” is the thing with feathers –
    That perches in the soul
    And sings the tune without the words –
    And never stops – at all –
    Emily Dickinson

  4. #4
    Moderator Top User jorola's Avatar
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    Thank you for sharing Marian. You must be proud! And such a handsome fellow! I know you often worry about him but he sounds like he is doing wonderful. Take respite in that and go easy on your poor self.
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same

  5. #5
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    Yes, it is a worry but he is very strong. He has had 6 brain surgeries but three were just to change the batteries in the transmitter. It's out patient, a long day but he goes home the same day which is amazing to me. Between him and then my husband getting Lymphoma plus my three surgeries and life support, we felt like an anvil hit us. But we did rise and find solace in each other and God. Like PO Guy once told me :When you think you have no more strength, reach way,down and find some more. It's there. He was right.
    Husband has PTCL-NOS......5 rounds of CHOPE chemo. April 27....6 month check up shows NED at this point. No,scans suggested at this time. We are very happy and pray for continued blessings.

    We also have a son, our only child,who was found to have an ependymoma tumor when he was 17. He is now 40 years old and married. He's had 6 brain surgeries, to remove the benign tumor and to try to get the seizure activity which was impossible. He was enrolled in a clinical study to have an experimental neurotransmitter placed. He recently had to have the battery replaced after 6 years. He has not had a seizure in 11 years so far and we are so grateful to God.
    When I am afraid I put my trust in you. Psalms 53:6

    "Hope” is the thing with feathers –
    That perches in the soul
    And sings the tune without the words –
    And never stops – at all –
    Emily Dickinson

 

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