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Thread: Our son's story

  1. #1
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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.
    67 year old husband diagnosed with Periphial T Cell Lymphoma Feb. 2015
    5 rounds of CHOPE chemo put him into remission for 2 years....
    June 2017 Relapse....radiation planned
    Develops ITP, Low platelets....Hospitalized 3 days to be given Gamma Gloublin....discharged....gave prednisone but forgot to give scripts for that and Klonopin....results in steroid psychosis from Prednisone.....second time this has happened. Had one instance of it during previous chemo.
    ITP recurs....4,000 platelets
    Al had spleen removed Sept. 25. It went well. Platelets up to 100,000but since he was given platelets the day before and during surgery the dr. wants to give it a few more days to see if platelets keep rising. Still in hospital. Good attitude. Grateful to God!
    Also caregiver to our 40 year old son who had a benign ependymoma tumor removed when he was 14 years old. 6 brain surgeries.
    Thank you God for all your blessings! 🙏❤️🙏

  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.
    67 year old husband diagnosed with Periphial T Cell Lymphoma Feb. 2015
    5 rounds of CHOPE chemo put him into remission for 2 years....
    June 2017 Relapse....radiation planned
    Develops ITP, Low platelets....Hospitalized 3 days to be given Gamma Gloublin....discharged....gave prednisone but forgot to give scripts for that and Klonopin....results in steroid psychosis from Prednisone.....second time this has happened. Had one instance of it during previous chemo.
    ITP recurs....4,000 platelets
    Al had spleen removed Sept. 25. It went well. Platelets up to 100,000but since he was given platelets the day before and during surgery the dr. wants to give it a few more days to see if platelets keep rising. Still in hospital. Good attitude. Grateful to God!
    Also caregiver to our 40 year old son who had a benign ependymoma tumor removed when he was 14 years old. 6 brain surgeries.
    Thank you God for all your blessings! 🙏❤️🙏

  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
    Aug 2017 - and ditto

  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.
    67 year old husband diagnosed with Periphial T Cell Lymphoma Feb. 2015
    5 rounds of CHOPE chemo put him into remission for 2 years....
    June 2017 Relapse....radiation planned
    Develops ITP, Low platelets....Hospitalized 3 days to be given Gamma Gloublin....discharged....gave prednisone but forgot to give scripts for that and Klonopin....results in steroid psychosis from Prednisone.....second time this has happened. Had one instance of it during previous chemo.
    ITP recurs....4,000 platelets
    Al had spleen removed Sept. 25. It went well. Platelets up to 100,000but since he was given platelets the day before and during surgery the dr. wants to give it a few more days to see if platelets keep rising. Still in hospital. Good attitude. Grateful to God!
    Also caregiver to our 40 year old son who had a benign ependymoma tumor removed when he was 14 years old. 6 brain surgeries.
    Thank you God for all your blessings! 🙏❤️🙏

 

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