Update: Help?? 23yo son dx'd with brain tumor referred to Mayo

  1. Another update for so many that have asked -

    I just returned from nearly 2 weeks in Rochester MN at Mayo. What an incredible place! I cannot say enough good about every single person I met -
    My son is finished his 3rd week of radiation yesterday - three more to go -

    I learned a lot - met a lot of really nice Radiation Techs, a Radiation Oncologist and they shared so much information. I was able to take awesome pictures of the room where the 'zapper' was - the form for his head that clamps down to the table - learned how many beams he's given each day (6) where they go into his head - crown, back, temples, behind each ear.
    He started on Compazine, and two days ago began dexamethasone, which thankfully boosted his appetite for not only food...but for his beautiful wife who arrived for her 10 day stay with him before returning home to their baby.

    I liked everyone of his professionals except the Social Worker we met with the final day of my stay. She came up to me later in the waiting room, while my son had gone in for his tx - and she began discussing something the three of us had talked about from the meeting earlier - All this was common stuff - and there was no 'violation of my son's personal stuff...' as I'm quick to pick up on as I am most careful myself - as we all are....but she said something right out of the blue - which seriously bothered me and still does. I shared with her that in a future meeting with my son - she might bring up whether or not he might like her to arrange a visit with a chaplain - as he and I had some rather deep conversations about beliefs, religions, or lack there of of both - just ...stuff...that most any 23 yo might wrestle with.
    I had listened to him, even asking if he would like to find someone to talk with while I was there to help him - he declined, but I know it's rattling around in his head.- Anyway, since this topic had not come up during his appt with her that day - I thought to mention it to her. She said she was thinking of a particular chaplain there that might be a good resource for him - very open, down to earth 'real' without a religious slant of one particular viewpoint. But then she tells me "If I accomplish one thing with your son during his stay here...it would be to get him to accept his prognosis."
    BLAM - I took a breath - and looked at her and said..."and just what do you feel my son understands his prognosis to be?" She mumbled something alone the lines of "oh, I'm not really sure - I don't have my notes in front of me but I review before each appt." I did not comment further - and then my son walked up and we left.

    My son is doing better than I am. He is scared, he is pacing himself with what he has to deal with in his head - he is being hopeful, he is being realistic, he is talking about 'stuff' and then he's not talking about all the what-if's. He is taking each day at a time right now - and for the next three weeks that is all he has to do. And I think he is doing a wonderful job. But for a 'professional' to breeze up to a family member and say something like this - it was way out of line. I know she's not my target - but for a few short minutes I was very, very angry at that comment.

    We DON'T KNOW what the prognosis is. It is not good - but the bad part may not be for a very long time. It's not next week - or maybe even this year -

    I'm exhausted. I'm back in Texas - I'm way too far away - I need to make some changes in where I live and where I work and how to make it all happen yesterday. Got my MN nursing license in the mail while I was gone - so I have that ready in a hurry - And yes - the prognosis probably sucks - and yes, the most this radiation might do is... maybe slow down or incapacitate the tumor - but, as the oncologist said - the tumor will always be there - it won't disintegrate - and a dead tumor can cause as much trouble as an active one - it can still press on nerves - and it might be a year before we see if there is a change in his vision - and that is one of the things that scares him the most - not being able to control his eye movements -
    But he has moments of being very upbeat, positive, and so do I - and with all the wonderful support I've received here - it just might all work out -
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  2. 4 Comments

  3. by   Spidey's mom
    Thank you for the update.

    My heart goes out to you - and prayers too.

    steph
  4. by   KellieNurse06
    wow...that was really tacky........I feel for ya! You could of gave her a zinger (and please don't take this personally towards you or your son!) "We are all going to die someday.....nobody gets out of this life alive"
    I think that would make her think before she speaks again. I have been taught alot by nurses who I know & have as friends.....and they give me lots of good things to really have under my hat to say under circumstances like this.....one who actually has aSW for a sister...and she's more messed up than those she tries to help. It's like they are trying to fix their problems vicariously through others............it's sad really....
    This woman need to know it's not about her & what she thinks.....it's about YOUR SON and what HE thinks.....after all he is living it.
    And don't let her get on the denial shpiel.....I've been there with my own 17 year old daughter, one illness 3 years ago she almost died and I actually had some yahoo say I was "in denial" ...ummm...17 years is hardly "denial"......5 minutes before I was being told my kid may not make it & then some yahoo is in my face smiling like there 's not a care in the world wanting to put her in some study...........NH (not happening)............lol..so I guess that's why I was "in denial" ....whatever ..one of my daughters home nurses was with me & nearly fell over...was pissed & had to get me away from the woman because I was livid...................
    So what I guess I am trying to say is don't let anyone try to say idiotic things to you that you know are inappropriate............I truly hope you & your son will be ok.............I can't even fathom going through what you & he are going through..........please know I am praying for his recovery ........just take it day by day & be there for him.........good luck.....
  5. by   jaystrupp
    I feel for you and your family. Three years ago my 29 year old husband was diagnosed with a glioblastoma multiforme brain tumor and this is not curable. He had two crani to debulk the tumor and the last time they put chemo waffers on the tumor in his brain to slow down the growth. Initally I was told he had 6 months to live, but being that he was strong and so young, he did live 18 month. We have two children who are now 9 and 8 and since he has died, I have never been myself. All that I can say is don't get caught up with all the procedures and next MRI and next treatment because we miss the days that they are here. I don't know if this makes any sence, but I was so focused on yes we will beat this, that I wasted time that I could have been making memories for my children and myself with him. Yes have hope, but also make it be realistic hope too. Jason was on chemo to help slow down the spread of the tumor in the end, but the side effects made him so ill and he could not enjoy the time that he had left, so he stopped taking the chemo. He did still take the Dexamethazone and Dilanitn but he had the best 3 months of his last life as he could. We took the kids camping, fishing, to Disney world, we went on a cruise. I am thankful for the good times that we had once we realized that he was going to die with or without the treatment.
    I am not saying give up or that type of thing, I am just saying look at the whole picture not just the here and now because that picture is what is matters.
    My blessing are with you and your son.
  6. by   SuesquatchRN
    Your and your son are in my prayers. ashera.

    :kiss

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