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Need advice on Medical research for a sick child

ShePersistedShePersisted member
in Parenting
Ladies- I am mostly a lurker on this board and been regular at F14. I don't post here much but read this board regularly. I thought it would be good get your advice as there may be a broader range of experiences with this group. I am happy to do an official intro at some point, I promise.

My cousin's 9 month old was diagnosed with a malignant tumor in his liver. He needs my help to help him identify a treatment plan. He lives in India and the Dr's there have suggested Chemo as well as surgery. He wants to explore if he can bring him to the US if there are better treatment options. For those who have a medical beackground or are familiar with cancer treatments can you suggest the best way to get this research started? How can I tap into stuff that is not apparent on google? Ideas on what and whom I should be asking (besides pedi)? Specific cancer treatment centers for children that are world class? How to I get access to medical journals that have been published or alternative/experimental treatment options or just children's cancer treatment for something like this in general?

Thank you so much!

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Re: Need advice on Medical research for a sick child

  • ShePersistedShePersisted member
    edited September 2014
    K3am said:
    I'm confused.. If it's not your child, why are you identifying the treatment plan? I understand wanting to help, but I'm not sure why you're in this position?


    (Not trying to sound rude or insensitive, just curious)
    My cousin has requested my help. I am only helping him with research, not pick the treatment plan. That will be his decision along with his wife. He just requested as he does not have the time or resources to look at what he can do. I basically have been asked to look up options (specifically in the US), send it to him, he discusses with his Dr. and then makes the call. So to clarify, I am helping him identify the treatment plan by providing him research and information on options for treatment. He will decide on what the treatment plan will be based on what he gathers.
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  • ShePersistedShePersisted member
    CTGirl30 said:

    Disclaimer: I am NOT a medical professional, nor am I dispensing any medical advice.

    Generall speaking, St. Jude's and Dana Farber Cancer Institutes are 2 of the best known institutions here in the US.  Where are you located?

    In terms of getting access to articles published in scholarly journals, you (or he) can start with your local library's reference librarian. Or you can visit your academic libraries (university, etc) to view their collections of journals, if they have the resources you're interested in in their collections.

    Thank you! I knew about St Jude's but not about Dana Farber. I will look into which of these places seem to be better equipped for his specific type of cancer. I am located in NY but I think we cna be open to location of treatment is indeed known to be great elsewhere.
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  • RondackHikerRondackHiker member
    Like I said on F14, your best bet is to find doctors that specialized in his cancer or in infant cancer and have them evaluate the medical records and make recommendations.


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  • shannond354shannond354 member
    I'm a librarian and I definitely recommend consulting your local library or local post-secondary library. They will have access to medical journals that the general public cannot access. You may be given 24 hour access, but you'll need to inquire at your specific library. Public libraries won't have access to the same medical materials as an academic library, but they'll have more restrictions on use. Ask for help! Those medical journals are intimidating. Good luck!
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  • outnumberedoutnumbered member
    Hg45 said:
    CTGirl30 said:

    Disclaimer: I am NOT a medical professional, nor am I dispensing any medical advice.

    Generall speaking, St. Jude's and Dana Farber Cancer Institutes are 2 of the best known institutions here in the US.  Where are you located?

    In terms of getting access to articles published in scholarly journals, you (or he) can start with your local library's reference librarian. Or you can visit your academic libraries (university, etc) to view their collections of journals, if they have the resources you're interested in in their collections.

    Thank you! I knew about St Jude's but not about Dana Farber. I will look into which of these places seem to be better equipped for his specific type of cancer. I am located in NY but I think we cna be open to location of treatment is indeed known to be great elsewhere.
    Does he have heptoblastoma?  
    I second St Jude or Dana Farber (DFCI).  Both are excellent hospitals.  If you get in contact with a patient advocate you might be able to coordinate care with a physician stateside so your family can stay in the country.  I also live in Boston and am more familiar with DFCI, but St Jude is amazing.  They specialize in pediatric cancers and will often treat children for free or on a much reduced basis.
    Smiley: April '05 Rocky: May '06 Tex: July '09
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  • ShePersistedShePersisted member
    outnumbered said:
    Hg45 said:
    Does he have heptoblastoma?  
    I second St Jude or Dana Farber (DFCI).  Both are excellent hospitals.  If you get in contact with a patient advocate you might be able to coordinate care with a physician stateside so your family can stay in the country.  I also live in Boston and am more familiar with DFCI, but St Jude is amazing.  They specialize in pediatric cancers and will often treat children for free or on a much reduced basis.
    Yes, I have a copy of his report and it does say heptoblastoma.
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  • outnumberedoutnumbered member
    Hg45 said:
    outnumbered said:
    Hg45 said:
    Does he have heptoblastoma?  
    I second St Jude or Dana Farber (DFCI).  Both are excellent hospitals.  If you get in contact with a patient advocate you might be able to coordinate care with a physician stateside so your family can stay in the country.  I also live in Boston and am more familiar with DFCI, but St Jude is amazing.  They specialize in pediatric cancers and will often treat children for free or on a much reduced basis.
    Yes, I have a copy of his report and it does say heptoblastoma.
    Heptoblastoma is a solid tumor.  It usually arises entwined with the vascular system in the liver.  Resection and chemo seems to be the standard of care.  They might do chemo first to shrink the tumor and then operate.  Chemo will continue after resection.  If the tumor is not involved with any veins or arteries they might be able to remove it immediately.  Chemo protocols can differ according to the pathology of the tumor.  If the tumor is removed completely survival rates are awesome.  I would suggest contacting a doctor at St Jude or DFCI.  Your physician can send detailed info about the tumor and its grading to another doctor.  They can consult about which chemo combo is best for the tumor and grading.
    Smiley: April '05 Rocky: May '06 Tex: July '09
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  • ShePersistedShePersisted member
    outnumbered said:
    Hg45 said:
    outnumbered said:
    Hg45 said:
    Does he have heptoblastoma?  
    I second St Jude or Dana Farber (DFCI).  Both are excellent hospitals.  If you get in contact with a patient advocate you might be able to coordinate care with a physician stateside so your family can stay in the country.  I also live in Boston and am more familiar with DFCI, but St Jude is amazing.  They specialize in pediatric cancers and will often treat children for free or on a much reduced basis.
    Yes, I have a copy of his report and it does say heptoblastoma.
    Heptoblastoma is a solid tumor.  It usually arises entwined with the vascular system in the liver.  Resection and chemo seems to be the standard of care.  They might do chemo first to shrink the tumor and then operate.  Chemo will continue after resection.  If the tumor is not involved with any veins or arteries they might be able to remove it immediately.  Chemo protocols can differ according to the pathology of the tumor.  If the tumor is removed completely survival rates are awesome.  I would suggest contacting a doctor at St Jude or DFCI.  Your physician can send detailed info about the tumor and its grading to another doctor.  They can consult about which chemo combo is best for the tumor and grading.
    Thank you. His MRI reads that one of the major veins is unable to be seen hence likely to be involved in the tumor. I assume that is why his treatment seems complex. I will certainly connect the Dr's to discuss the details once I get a few referrals for my cousin. Thank you for your help again!
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