LL Lovelies, Lurkers and Fans - I need your help.

  1. You have chosen to ignore posts from TheRealJBar. Show TheRealJBar's posts

    LL Lovelies, Lurkers and Fans - I need your help.

    Hey everyone, Mr. JBar and I need some help.  We just found out that his niece has a brain tumor, in an area that will be difficult to reach, and it's covering the part of her brain that controls motor functions.  So here's what I need:

    Those of you who have a relationship with a higher power, or the universe, or anything that smacks of karma, please put in a good word for Molly, ok?

    Those of you who can recommend surgeons in Boston, or in Kansas City (where she lives), let me know?  Or if you know of someone wonderful who's ANYWHERE in the country, tell me.  I know there are probably privacy restrictions on naming names on here so if you could message my BDC page we'd be grateful.

    Those of you who can offer any advice, encouragement, and wisdom to Molly's family, in terms of places to stay while in Boston, shout it out.  They can obviously stay with us but they'd prefer to be nearer the hospital.

    Any other advice will be welcomed.  Alternative medicine, nutrition comments - nothing is off the table.  She's just a lovely mid-20s sweetheart and we need to rally as much support as we can.  We'll be setting up a CarePages unless someone can suggest a better alternative.

    You guys have always been a great community for me and I'm sure you will come up with stuff that we haven't thought about yet, with the newness of this all.  Lurkers, this is your chance to join in.  Please don't be shy.

    Thanks to all in advance.
     
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  3. You have chosen to ignore posts from LWhitt58. Show LWhitt58's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    JBar, I'm so sorry to hear about your niece.  Johns Hopkins is one of the best (if not THE BEST) centers for brain surgery in the U.S.  And Dr. Alfredo Quinones was featured in several articles and on several news shows:

    http://today.msnbc.msn.com/id/25802159/ns/today-today_people/t/once-migrant-worker-today-hes-brain-surgeon/

    Locally, I believe Mass General has a very highly regarded Brain Surgery group.  This link might help with hospitals around the country:

    http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery

    Yup - Mass General is #3, with the Mayo Clinic as #2 behind Johns Hopkins.


    My best thoughts and wishes go to Molly and her family.
     
  4. You have chosen to ignore posts from softpatina. Show softpatina's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    I have a friend who is much older then your neice who is currently in remission from a form of brain cancer...successful surgery and follow-up treatments at Mass General. There ARE success stories out there!
    Sending healthy vibes your neice's way in the days to come.

    soft p.
     
  5. You have chosen to ignore posts from EnjoyEverySandwich. Show EnjoyEverySandwich's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.


    JBar:

    I have a relative who has a brain tumor in an area they did not want to operate -- he had multiple radiation treatments to stop the growth of the tumor instead (which seems to have worked in his case).  I know he went to a hospital in Boston -- either Mass Ganeral or Dana Farber.

    I'll try to find out more details for you.


     
  6. You have chosen to ignore posts from TheRealJBar. Show TheRealJBar's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    Thank you CHC, LWhitt, Sandwich and Patti (my nickname for you!).  Hearing success stories is really helpful, and CHC and LWhitt, I've sent your links along to the family.  If we can demystify as much of this as possible for them, they can focus on getting their daughter back to health. 

    I have to say, I like this forum for the fun and friendship.  I LOVE it when we all  rally for a cause.  You guys already have the back of a young woman you don't know, and that is a wonderful, awesome, thing. 
     
  7. You have chosen to ignore posts from PoohBear44. Show PoohBear44's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    Oh, JBar, I'm so sorry to hear about Mr. JBar's niece.  CHC and LWhitt have given wonderful links and suggestions.  I  have not known anyone with this type of tumor.  I honestly believe my mom has an "in" with the (wo)man upstairs.  I will be praying and will ask my mom to as well.

    I have know people who use the carepages and I think they are a wonderful way to share information with loved ones.
     
  8. You have chosen to ignore posts from LWhitt58. Show LWhitt58's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    In Response to Re: LL Lovelies, Lurkers and Fans - I need your help.:
    [QUOTE]OI have know people who use the carepages and I think they are a wonderful way to share information with loved ones.
    Posted by PoohBear44[/QUOTE]



    YES!  There are various ones out there; a woman on one of my cooking boards is using http://CaringBridge.org to write out her thoughts and post information about her various test results, etc. for everyone to see (breast cancer and melanoma).  The user/patient can set it for privacy and the fact that they have to be "accepted" by the user/patient so view the blog/info, so that keeps information within the group of family/friends that the family wishes to see it.
     
  9. You have chosen to ignore posts from jkjband. Show jkjband's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    Going through a similar situation with my wife (and getting great news today around noon time) I feel for you and what your family must be going through.  I don't know any brain tumor Dr's (I whish I did), but I do hope for the best for her... good luck

     
  10. You have chosen to ignore posts from hollygolitely. Show hollygolitely's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    JBar, I am so very sorry to hear your news...... especially about someone so young.  I think MGH or Dana Farber are the way to go.  Are they coming this way for a second opinion?  I'm sorry I don't know any doctors names for that type of thing but I'm sure the internet can provide that or references from people here.  If it were me or someone I knew I would want them to go to one of the best places and we have all that here.  Most important, keep the faith, one never knows what they can do and what miracles can happen.  
     
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  12. You have chosen to ignore posts from McBostonrob. Show McBostonrob's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    A close friend of mine had a brain tumor removed at MGH and I felt like those people were miracle workers.  That particular surgeon is no longer there, but MGH is where I'd start my research.  Keep in mind that this is totally anectdotal evidence; for all I know there could be 5 facilities in Boston that are better.  But whether there are or there aren't, they do miracles at MGH. 
    Good luck, jbar. 
     
  13. You have chosen to ignore posts from Kind-of-Irritating-Lady. Show Kind-of-Irritating-Lady's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    My goodness, JBar, I am so sorry to hear this about your niece.  

    My (at the time, future) mother-in-law had a brain tumor removed at Mount Auburn Hospital a few years ago, and had some wonderful doctors and staff there.

    Also, I agree with the sentiment about MGH, they have also treated several family members with care and sensitivity.

    Finally, I know of an excellent neurologist at Lahey Clinic who I deal with on a regular basis -- you know where to find me!

    All the best to your niece and family.
     
  14. You have chosen to ignore posts from yogafriend. Show yogafriend's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    Dear Jbar,

    I'll definitely include Molly in my prayers, that's a given, okay?

    Did you know that the most amazing organization that can help you is right here in Watertown?  The National Brain Tumor Society, just a fantastic organization, with information and resources to suit your needs:

    http://www.braintumor.org/

    I found out about the BTS when I learned that a neighbor of mine had a brain tumor a few years ago, as well as another very special person that I loved very much who had one.  I've donated to the BTS and think it's a great organization.  If I dig up anyadditional information that might be of interest, I'll let you know.  Keep the faith.  
     
  15. You have chosen to ignore posts from TheRealJBar. Show TheRealJBar's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    Thank you Rob, PCE and Yoga - yours are very encouraging words.  I'm pushing hard for MGH Rob.  They saved me three years ago.  PCE I'll ask Molly's Mom about the neurologist and Yoga, I'm sending her the link to the BTS right now.
     
  16. You have chosen to ignore posts from captainfriday. Show captainfriday's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    Much love for Molly, JBar.

    I am DEFINITELY an advocate for MGH. They successfully removed a brain tumor from my aunt. My experience there with my finger reattachment was stellar. GREAT hospital.
     
  17. You have chosen to ignore posts from AlyssaJones. Show AlyssaJones's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    In Response to LL Lovelies, Lurkers and Fans - I need your help.:



    Oh yuck.  Well, as a note of encouragement, (I know we talked a little about this before JBar) my mom's brain tumors responded very well to radiation treatment... her most recent MRI showed no lesions.  (She has stage IV breast cancer that recently spread to her brain.)  Of course, there is some residual imflammation in her brain sho she does have some difficulty with walking, writing and remembering some things, but at least theres no cancer in her brain.  Its AMAZING what medicine can do these days.

    That said, my mom has also experienced a great deal of symptomatic relief with acupuncture that I give her.  It helps with her energy levels and all the side effects from the various medications she's on.  It helps a lot with chemo side-effects as well... but they might not be using chemo because it is in her brain. 
    If you PM me where she lives, I can probably find an acupuncturist for her to go to if she is interested. 

    Lastly, I will definitely send out all the healing vibes I can.  Cancer is the suckage.  

     
  18. You have chosen to ignore posts from AlyssaJones. Show AlyssaJones's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    In Response to LL Lovelies, Lurkers and Fans - I need your help.:


    oh, duh... Kansas City.  Ok... I'll see if I can get a referral for her out there.  If she wants acupuncture when in Boston I can definitely see her.

    BUT if they can swing it, Dana-Farber here in Boston is the BEST.  They can actually help families with hotels and whatnot when they are here.  Not to mention a lot of counseling and support groups, which her local hospitals should hopefully have as well.  Social workers that work for the hospital can help with all kinds of things.
     
  19. You have chosen to ignore posts from Inter-Planet. Show Inter-Planet's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    JBar - If you know the type of tumor (i.e. glioblastoma, etc) that would be important as each type of tumor has its own prognosis, treatment and specialists.  If you can find out, I can find out who the "thought leaders" are for that tumor type.
     
  20. You have chosen to ignore posts from wizen. Show wizen's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    JBar, my thoughts are with your niece and the family!

    I sent you an email with some specific info, but there are some excellent resources in the Boston area, questions to ask are what type of brain tumor and specifically the location.  Different programs around town specialize in different areas - and there are lots of new and promising treatments including non-surgical options as well. 

    Questions to ask of any surgeon is are how many surgeries like this have you done, and what was the outcome?  You definitely want someone who's done multiple similar cases, the more the better! 
     
  21. You have chosen to ignore posts from 2ada63d622e89774a9fdcbc90527ab8e. Show 2ada63d622e89774a9fdcbc90527ab8e's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    A relative had an acoustic neuroma successfully removed at MGH (I think) about ten years ago. The doc has retired, though. I have some friends whose child was also successfully treated for a brain tumor; I'll check with them on where the surgery was done and post back here.

    I second the referal to the brain tumor non-profit.

    Some of the hospitals have low-cost housing, short or long-term that they don't offer until the need arises. For instance, there are some long term apartments that are offered to people who need an extended set of chemo or radiation treatments.

    Another thing to think about is whether there'll be any post-surgery rehabilitation involved. It is important to think about the quality and location (Boston, near Johns Hopkins, or KC) of the facility and whether it has experience with that type of surgery and is equipped to do the kind of rehab needed.

    I think the local hotels also have some weekly or longer term rates below their rack rates that they never publish but might offer to families who are in the Boston area for medical treatment.

    Hope this helps, even a tiny bit. I don't pray per se but I'll send healing thoughts. We know several people who have had brain tumors removed very successfully.

    And, AJ, if you're reading this. I'll think healing thoughts also for your Mom; we just put my sister with metasticized bc on hospice.


     
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  23. You have chosen to ignore posts from backbaybabe. Show backbaybabe's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    Jbar, my thoughts and prayers are going out to Molly, her family and You and MrJbar!!

    I might have a contact at BI for a brain surgeon, as a friend of mine's niece also went through a similiar situation. her results were a miracle.
    i'll get back to you...

    also, in regards to the family being potentially closer to the niece once treatment has started(if in Boston, or anywhere else for that matter)
    there's Ronald McDonald houses, where families of patients can stay nearby in many time free or very in-expensive accomodations...
    not sure if they're still around. But i know Boston had one as well..just checked... webiste under construction, but info there

    http://www.google.com/search?sourceid=navclient&ie=UTF-8&rlz=1T4ADRA_enUS400US402&q=ronald+mcdonald+house+in+boston

    Hospitals would also be quite aware of surrounding services for people coming from out of town to house them while in town.

    again, my thoughts and prayers to you and your family...

    i'll get back to you with a name...

    {{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}}}}}]
     
  24. You have chosen to ignore posts from RedFishBlueFish. Show RedFishBlueFish's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    My uncle was diagnosed with very advanced cancer, including two large brain tumors, a couple of years ago. One was removed surgically, the other treated with chemo. He's gone through all of his treatment at MGH and it's a miracle that he's alive today. It seems like I'm adding to the chorus, but there it is.

    Of course, there are plenty of factors to consider when seeking treatment in Boston vs KC, but I don't think you'll find many people who advocate for KC in that battle. The density of awesome facilities here is unparalleled.
     
  25. You have chosen to ignore posts from 2ada63d622e89774a9fdcbc90527ab8e. Show 2ada63d622e89774a9fdcbc90527ab8e's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    1) Our friend's son was treated at Childrens' Hospital here in Boston. I'm not sure whether Childrens' will treat someone in her twenties, but it's worth asking.

    2) Mr. GMV reminded me to tell you that all the hospitals have a social worker assigned to each patient who provides information and resources of all kinds to the patient and family and who prepares appropriate discharge plans. We have found these folks to have a wealth of wisdom.
     
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