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Status of John Tentler

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  • Kim Rollins
    Hi All. It s been a while since I have checked in. I hope things are going well for all of you. It s been a tough month for the family. My father who has a
    Message 1 of 10 , Jul 3, 2006
      Hi All.

      It's been a while since I have checked in. I hope things are going well for all of you.

      It's been a tough month for the family. My father who has a GBM has battled pneumonia, meningitis and several brain infections. Somehow he has pulled through it all. Although it is still a roller coaster day to day, overall he seems to be progressing. He has had no tumor activity since it was removed back in April.

      The problem is that the family feels that the major teaching hospital in Chicago that has been treating him wants to limit the treatments and rehab they offer to him because he has terminal cancer. From my perspective, he has the same rights to recovery as anybody else.

      I plan to file a complaint with patient services this afternoon and I am going to hire a lawyer. Any other suggestions?

      Thanks for your help and support.

      Kim


      ---------------------------------
      Want to be your own boss? Learn how on Yahoo! Small Business.

      [Non-text portions of this message have been removed]
    • Trisha Williams
      Kim - I have tried to find something specific for you as far as advocacy for patient rights, but have been unsuccessful. I do suggest you contact the American
      Message 2 of 10 , Jul 5, 2006
        Kim -

        I have tried to find something specific for you as far as advocacy
        for patient rights, but have been unsuccessful. I do suggest you
        contact the American Cancer Society 1-800-ACS-2345, American Brain
        Tumor Association 800-886-2282 , and the medical society in the
        county where you live. Your father is a fighter and people have won
        the battle with GBMs, just ask Matthew and David. If he's not done
        fighting, he deserves to have his medical team work with him.

        I will keep trying to find something for you. In the meantime, I
        hope the above agencies can be of help in either assisting you
        themselves or directing you to someone who can.

        How about the ACLU? It seems to me it is a civil liberty to have
        the access to medical care. Am I off here? Their website is
        http://www.aclu.org/ and you can find a local office to call by
        checking there.

        Thank you for keeping us informed about your father. Please let him
        know that we are keeping him in our thoughts and prayers and if
        there is anything we can do, let us know. I'll see if I can find
        out anything on my end for you.

        Good luck and keep up the good work in advocating for your dad. Go
        Team Tentler!

        Trisha

        --- In BrainSurgery@yahoogroups.com, Kim Rollins <chicago546@...>
        wrote:
        >
        > Hi All.
        >
        > It's been a while since I have checked in. I hope things are
        going well for all of you.
        >
        > It's been a tough month for the family. My father who has a GBM
        has battled pneumonia, meningitis and several brain infections.
        Somehow he has pulled through it all. Although it is still a roller
        coaster day to day, overall he seems to be progressing. He has had
        no tumor activity since it was removed back in April.
        >
        > The problem is that the family feels that the major teaching
        hospital in Chicago that has been treating him wants to limit the
        treatments and rehab they offer to him because he has terminal
        cancer. From my perspective, he has the same rights to recovery as
        anybody else.
        >
        > I plan to file a complaint with patient services this afternoon
        and I am going to hire a lawyer. Any other suggestions?
        >
        > Thanks for your help and support.
        >
        > Kim
        >
        >
        > ---------------------------------
        > Want to be your own boss? Learn how on Yahoo! Small Business.
        >
        > [Non-text portions of this message have been removed]
        >
      • Kim Rollins
        Trisha - Thank you so much for the information that you passed along to me. It sometimes feels like we have no one on our side. So I will definitely take
        Message 3 of 10 , Jul 5, 2006
          Trisha -

          Thank you so much for the information that you passed along to me. It sometimes feels like we have no one on our side. So I will definitely take advantage of the resources that you sent. Thank you!

          I have to admit that our family was skeptical when my father insisted in participating in this support group as he followed everybody so closely. It really has proven itself to be such a great source of information made up of wonderful people. Knowing how difficult my father's journey has been, it is comforting to to be involved in a community where everyone supports one another. And I may not respond to many postings, you are all in my thoughts and prayers.

          Again, thank you.

          Take care.

          Kim


          Trisha Williams <trisha4080@...> wrote:
          Kim -

          I have tried to find something specific for you as far as advocacy
          for patient rights, but have been unsuccessful. I do suggest you
          contact the American Cancer Society 1-800-ACS-2345, American Brain
          Tumor Association 800-886-2282 , and the medical society in the
          county where you live. Your father is a fighter and people have won
          the battle with GBMs, just ask Matthew and David. If he's not done
          fighting, he deserves to have his medical team work with him.

          I will keep trying to find something for you. In the meantime, I
          hope the above agencies can be of help in either assisting you
          themselves or directing you to someone who can.

          How about the ACLU? It seems to me it is a civil liberty to have
          the access to medical care. Am I off here? Their website is
          http://www.aclu.org/ and you can find a local office to call by
          checking there.

          Thank you for keeping us informed about your father. Please let him
          know that we are keeping him in our thoughts and prayers and if
          there is anything we can do, let us know. I'll see if I can find
          out anything on my end for you.

          Good luck and keep up the good work in advocating for your dad. Go
          Team Tentler!

          Trisha

          --- In BrainSurgery@yahoogroups.com, Kim Rollins <chicago546@...>
          wrote:
          >
          > Hi All.
          >
          > It's been a while since I have checked in. I hope things are
          going well for all of you.
          >
          > It's been a tough month for the family. My father who has a GBM
          has battled pneumonia, meningitis and several brain infections.
          Somehow he has pulled through it all. Although it is still a roller
          coaster day to day, overall he seems to be progressing. He has had
          no tumor activity since it was removed back in April.
          >
          > The problem is that the family feels that the major teaching
          hospital in Chicago that has been treating him wants to limit the
          treatments and rehab they offer to him because he has terminal
          cancer. From my perspective, he has the same rights to recovery as
          anybody else.
          >
          > I plan to file a complaint with patient services this afternoon
          and I am going to hire a lawyer. Any other suggestions?
          >
          > Thanks for your help and support.
          >
          > Kim
          >
          >
          > ---------------------------------
          > Want to be your own boss? Learn how on Yahoo! Small Business.
          >
          > [Non-text portions of this message have been removed]
          >






          ---------------------------------
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          Get on board. You're invited to try the new Yahoo! Mail Beta.

          [Non-text portions of this message have been removed]
        • Patricia Williams
          Thank you for telling us about that site! (Patient Advocate Foundation) I have added it to our LINKS section for future reference. Wonderful. _____ From:
          Message 4 of 10 , Jul 6, 2006
            Thank you for telling us about that site! (Patient Advocate Foundation) I
            have added it to our LINKS section for future reference. Wonderful.







            _____

            From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
            Behalf Of uswoods5
            Sent: Thursday, July 06, 2006 2:39 AM
            To: BrainSurgery@yahoogroups.com
            Subject: [Norton AntiSpam] [BrainSurgery@Yahoo] Re: Status of John Tentler



            These US people have been helpful in the past:

            http://www.patienta <http://www.patientadvocate.org/> dvocate.org/





            [Non-text portions of this message have been removed]
          • angela
            i am so sorry for your loss. as a brain tumor survior i take his passing as a personal loss. we are all interconnected in this struggle. In His service i
            Message 5 of 10 , Jul 30, 2006
              i am so sorry for your loss. as a brain tumor survior i take his passing as a personal loss. we are all interconnected in this struggle.

              In His service i remain,
              angela


              "do not fear it if you can help it" (a mustard seed, a mustard seed)

              ----- Original Message -----
              From: icequeen_ah
              To: BrainSurgery@yahoogroups.com
              Sent: Sunday, July 30, 2006 11:46 AM
              Subject: [BrainSurgery@Yahoo] Re: Status of John Tentler


              I'm new here, but I'd like to extend my deepest sympathies on your
              loss. My thoughts and prayers are with you and your family at this
              difficult time.

              May God bless you and your family, and bring your father's spirit to
              His side.

              Aidines

              --- In BrainSurgery@yahoogroups.com, "chicago546" <chicago546@...>
              wrote:
              >
              > Hello Everyone.
              >
              > Team Tentler fought courageously for my father; but unfortunately
              we
              > didn't win the battle against my father's brain tumor. My father,
              > John Tentler passed away peacefully on July 24th from regrowth of
              > his GBM brain tumor.
              >
              > I want to thank everyone for the support and insight that you
              > provided our family over the last several months. Even during his
              > final days when he was unable to speak, my father smiled at the
              > mention of "brains.com" (which we humorously nicknamed this group
              > early in his journey).
              >
              > Patricia - I personally want to thank you for welcoming my father
              > into the group with such open arms. He respected you and
              > appreciated your efforts with the brain tumor cause.
              >
              > What a loss for Team Tentler! But I find peace within myself that
              I
              > was able to be with my father throughout his entire journey.
              >
              > Good luck and good health to all of you!
              >
              > Kim
              >
              > <trisha4080@> wrote:
              > >
              > > John,
              > >
              > > You have been through a lot in the last couple of weeks. I have
              > just
              > > returned from the American Brain Tumor Association and Florida
              > Brain Tumor
              > > Association conference in Tampa so I was unable to write sooner.
              > >
              > > A few things I want to say to you (in addition to the wonderful
              > advice you
              > > already received):
              > >
              > > Keeping it together will come more naturally than you think.
              > Somehow it
              > > just happens. (right guys?) You are experiencing very natural
              > feelings of
              > > "overwhelm." What you will hopefully end up doing, as many of
              the
              > rest of
              > > us have done, is to learn to take this one day at a time, one
              step
              > at a
              > > time. Trying to look ahead and absorb the whole journey at once
              > is far too
              > > overwhelming for anyone.
              > >
              > > As far as losing control or not being in charge, you have
              already
              > proven
              > > that you ARE in charge. You found us and you reached out. You
              > will empower
              > > yourself with education and information. You don't have to give
              > up control.
              > > Be ready when you see the doctors and ask questions until you
              are
              > satisfied
              > > that you really do understand what they have said and you
              > understand what
              > > all your options are. Don't be afraid (in fact, I recommend you
              > do this) to
              > > ask for a second opinion. Visit sites like:
              > > http://www.abta.org/buildingknowledge5.htm
              > > http://www.tbts.org/categoryList.asp?categoryID=353
              > > http://www.braintumor.org/
              > > for information.
              > >
              > > Ursula's recommendation regarding BRAINTMR (or was it Mary's
              > suggestion?) is
              > > an excellent one. You can find out more about joining this list
              > at:
              > > http://braintrust.org/support.htm
              > >
              > > Help your family be more prepared to help you by finding
              caregiver
              > support
              > > groups for them (you will find information about these types of
              > groups at
              > > the resources above). Discuss with them your wants and feelings
              > so, if for
              > > a period of time you are unable to express yourself
              sufficiently,
              > they will
              > > have an idea what you would want done and advocate for you.
              > >
              > > Learn how to ask for help. You would be surprised how helpless
              > family and
              > > friends often feel and how therapeutic it is to them when you
              > reach out and
              > > ask them to do something for you. So, not only does it help
              YOU,
              > it helps
              > > them. Many people are truly at a loss for knowing what to do
              and
              > want so
              > > desperately to do something. It is often hard for us to ask,
              but
              > maybe
              > > knowing how happy it makes people to be able to help will make
              > this "asking"
              > > a little easier.
              > >
              > > The benefits of all this preparation are two-fold. One, it
              helps
              > you
              > > prepare and adequately inform yourself to advocate for
              yourself.
              > Second, it
              > > keeps you so busy, it helps to distract you from the
              > uncomfortableness of
              > > this difficult time.
              > >
              > > Keep talking with us! Ask as many questions as you would like.
              > Tell us
              > > where you are and maybe some of our members, or members on other
              > lists you
              > > may join (like BRAINTMR) will have recommendations for
              > neurosurgeons and/or
              > > other types of physicians who could be useful to you.
              > >
              > > Hang in there. Although this is very difficult, it is also a
              time
              > during
              > > which you will become stronger and also closer to your family
              and
              > loved
              > > ones.
              > >
              > > I am glad you found us. You are not going to do this alone. We
              > will be
              > > "there" with you.
              > >
              > > Hang in there, we are all pulling for you,
              > >
              > > Trisha
              > > Trisha Williams, R.N.
              > > T.H.E. (The Healing Exchange) Braintrust, Director/Board Co-Chair
              > > BrainSurgery@Yahoo Group Founder/Moderator
              > > Brain Tumor Survivor
              > > 4.8 cm meningioma left frontal/parietal/temporal lobes resected
              > 5/3/99
              > > CHECK OUT OUR polls:
              > http://health.groups.yahoo.com/group/BrainSurgery/polls
              > >
              > >
              > >
              > >
              > >
              > >
              > > -----Original Message-----
              > > From: BrainSurgery@yahoogroups.com
              > [mailto:BrainSurgery@yahoogroups.com] On
              > > Behalf Of johndtlith
              > > Sent: Friday, January 27, 2006 9:07 AM
              > > To: BrainSurgery@yahoogroups.com
              > > Subject: [BrainSurgery@Yahoo] NEW TO THE CLUB
              > >
              > > FRIDAY THE 13TH WAS THE WORST DAY EVER. AFTER SLURRED SPEACH ON
              > THE
              > > 11TH AND A DAY OF TESTING ON THE 12TH AND 13TH, MY GENERAL
              > > PRACTICIONER RECOMMENDED THAT I VISIT NORTHWESTERN MEMORIAL
              > HOSPITAL
              > > IN CHICAGO FOR FURTER EVALUATION. THE INITIAL SCANS SHOWED TWO
              > > LEASIONS DEEP IN THE BRAIN. ALL THE OTHERS TESTS (TOP TO BOTTOM)
              > > SHOWED OK.
              > >
              > > ALL THAT I KNOW RIGHT NOW IS THAT THE BIOP IS NEEDED TO
              DETERMINE
              > IF
              > > THE SOURCE CAN BE IDENTIFIED, OR THE LEASIONS CLASSIFIED FOR
              > TREATMENT.
              > >
              > > OF COURSE WE HAVE THE FAMILY EMOTIONS TO DEAL WITH, PROBABLE
              > REHAB,
              > > RADIATION, AND ALL THE REST THAT WILL BE DEFINED AS WE MOVE
              > FORWARD.
              > >
              > > HOW DO YOU ALL KEEP IT TOGETHER. AT ALL MOST 65 AND WORKING
              SINCE
              > 11
              > > ITS DIFFICULT NOT TO BE IN CHARGE....
              > >
              > > JOHN
              > >
              > >
              > >
              > >
              > >
              > > The BrainSurgery@Yahoo website is not a substitute for medical
              > advice: THIS
              > > WEBSITE IS NOT DESIGNED TO, AND DOES NOT, PROVIDE MEDICAL
              ADVICE.
              > All
              > > content, including text, graphics, images, and information,
              > available on or
              > > through this Web site ("content") are for general informational
              > and support
              > > purposes only. The content is not intended to be a substitute for
              > > professional medical advice, diagnosis or treatment. NEVER
              > DISREGARD
              > > PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT, BECAUSE OF
              > SOMETHING
              > > YOU HAVE READ ON THIS WEB SITE. NEVER RELY ON INFORMATION ON
              THIS
              > WEB SITE
              > > IN PLACE OF SEEKING PROFESSIONAL MEDICAL ADVICE.
              > >
              > > Community email addresses:
              > > Post message: BrainSurgery@
              > > Subscribe: http://groups.yahoo.com/group/BrainSurgery
              > > List moderator: Trisha4080@
              > >
              > > Yahoo! Groups Links
              > >
              >





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