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

  1. Don't know what exactly I need help with - except everything. Very emotional and sad day. I'm a single nurse in Texas - my son, 23 yo, is in Air Force stationed in Grand Forks. He visited earlier this month to attend a tech school and also see his family - He had been complaining off and on for a while of having occasional double vision. While he was in Texas - it got worse. Returned to Grand Forks and immediately the AF MD sent him for MRI - yesterday. It was not good - it is not a definite dx yet - and I don't have the paperwork - but it appears it could be a brain stem glioma - or a number of other tumors. but it's on the brain stem - It's big - 2 inches - and no clear margins - and that's where life stands at this second. He went for EEG this morning and of course they could tell him nothing. Dr. yesterday said they would be sending him to Mayo soon. We don't know when. We think this week.

    He is in shock - I am in shock - but I need to be controlled and not fall apart.
    He is a new husband and a brand new daddy to a beautiful baby girl born 9/26. His wife is wonderful. Both her parents and bros/sis are in Grand Forks - and they are both NP's - and retired AF flight nurses. So my beautiful son/man has good support on all sides.

    But I'm also his MOM - and I'm aching I'm not there - And don't know whether to close up home - figure out bills, logistics and how and when to get there. So many unknowns right now.

    Questions - if any one can - When someone comes into Mayo - do they usually stay for a while - being tested, retested, dx'd and then tx'd? If his young wife comes with him - where does she stay. If I come up in the next week - where can I stay? Need advice on accommodations - Is getting to Mayo difficult if I drive - 3 day drive from here - should I try to fly and rent a car? Is this an impossible time of year in re to weather? I am feeling totally paralysed right now sitting in San Antonio TX - and not knowing more - but at the same time - I need to be ready to do something - maybe with little notice. My finances are tight as well - and with just taking off - I'm also taking off from shifts - I am single so it's just my income. But I don't really care about money - it's just the being there for my son - whose beautiful life has just come to a skidding stop and turned a sharp corner. The what ifs are making us insane.

    Sorry for such a long letter - and not sure if this was the right place on all nurses to post it.

    Any advice, support or prayers would be very much appreciated -
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  2. 3 Comments

  3. by   glb1960
    My heart aches for you and your family Ashera. I live about 40 min. north of Rochester and I will tell you what I can. Most cancer tx's are done on an out pt. basis. In pt. only when really sick. If there is an extended stay neccessary, there are numerous types of housing available, from hotels to Ronald McDonald to private homes. Getting to Mayo is not hard. Rochester is only 90,000 people and dominated downtown by the Mayo Clinic. There are signs everywhere. The weather can be nasty this time of year, but right now we are having a terribly sissy winter. No snow on the ground today. You could fly in. Rochester has a middle sized airport and i would think there are rental cars available. Or you could fly into Minneapolis and drive south. That would be about a 70 -80 min. drive.
    I have a suggestion. There are some small studies that show by lowering the serum levels of copper that tumor growth can be slowed significantly. Serum copper is vital to angiogenisis which tumors use to get their blood supply to grow so rapidly. By lowering copper levels, tumors can't make new blood vessels so they can't grow so fasr. The small studies used a prescription drug that was cheap to lower serum copper levels. I don't own stock in any drug companies, just a useless fact from some nursing mag I read somewhere.
    Good luck and God bless your family, Gary
  4. by   Ashera
    Gary - thanks so much for your lengthy reply - I posted also under the oncology forum and have had other replys as well -
    I read them to my son - and have filed much away to refer to in the coming weeks. I will look into the copper link - and as I explained to my son -
    sometimes - when you throw a line out to those here with us - or in the form of a prayer upwards... you get bits and pieces of knowledge back that just might be a small piece of a very big puzzle -

    To you and everyone else from the oncology forum who have responded so far - you just have no idea what a comfort and balm you have been for my heart in just the last 24 hours ! The way everyone has reached out and just...been there. We can't ever forget - as nurses, moms, dads, friends, lovers ....how sometimes just a word or a touch speaks volumes. Thank you so much!

    Update: My son had his EEG yesterday morning. Was simply told late yesterday by a Colonel in the AF - that it 'looked good' - period. Helped calm him a bit - and I grabbed on to it as well and used it to sleep maybe a little better....yeah, right.
    Anyway - he is scheduled to drive to Mayo January 1st with his wife - appt early Tues with neurosurgeon - anticipates right now this will be out pt - and says the AF has written this as a 4 day 'order' so he thinks he will be returning back to the base on Thursday. So really - we won't know anything more til Mayo sees him - and we get a more definitive dx - and then all the what - ifs drop off and we have A NAME - a PLAN - and then know where to channel all this fear and focus on WHAT IS.

    After talking with my son and his inlaws who are in Grand Forks - who are also both nurses - and whom I love as well - I will wait to come up. He and his wife need to do this together - as much as I want to be there. If I am there - I might dilute the strength they need find in each other - by being someone else to lean on. And I agree - but you know how my heart must be feeling. Then...when they return - and we see what happens from here - I
    will have more information to further stir into my pot of not having a clue what I should be doing. Maybe it will become clearer.

    I sleep - and I'm fine - and then I wake up and my son's face is in front of me and I'm thinking ...this isn't real. Been going through this same stuff on a much less level everytime he's been deployed. But THIS is not the way it was supposed to happen.

    Think it might be time to find a good therapist - TODAY - but until then - all of my beautiful nurse angel friends are worth ten times over that in your instant support, love and prayers!
  5. by   Ashera
    [QUOTE=glb1960;1988944]My heart aches for you and your family Ashera. I live about 40 min. north of Rochester and I will tell you what I can. Most cancer tx's are done on an out pt. basis. In pt. only when really sick. If there is an extended stay neccessary, there are numerous types of housing available, from hotels to Ronald McDonald to private homes. Getting to Mayo is not hard. Rochester is only 90,000 people and dominated downtown by the Mayo Clinic. There are signs everywhere. The weather can be nasty this time of year, but right now we are having a terribly sissy winter. No snow on the ground today. You could fly in. Rochester has a middle sized airport and i would think there are rental cars available. Or you could fly into Minneapolis and drive south. That would be about a 70 -80 min. drive.

    Gary - just posted an update under Oncology - He's going radiation alone - no biopsy - starting on Monday for 6 weeks. I'm coming in on Friday evening and will stay til the 30th and then see about come back if necessary.
    He's got a wonderful place to stay - AF paying - and we are both looking forward to exploring Rochester - hopefully he'll be feeling pretty good this early in the game. I'm not sure anymore about your 'sissy winter' statement though!
    Wanted to say thank you again for your early response a couple of weeks ago - it's been a long time getting to today - but there seems to be an intense relief in finally having A PLAN...

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