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February 2014 Moms
ShePersisted
member
Update: Need advice on medical research. I am so heartbroken! (warning sick child involved)
ShePersisted
member
I just got news that my first cousins son who is 2 months older to K so about 9 months was just diagnosed with a malignant tumor in his liver.
We've celebrated our pregnancies and birth of our kids together. I even took pics of both the boys when I was in India. I just don't even know what to say. I am so so heart broken for them. I want to offer support but how do you even start with this. I don't know anything about the disease, he lives in India and probably will be money crunched.
How do I approach this? What should I say? My mom told me the treatment will probably we very aggressive as the tumor is growing very fast and the prognosis is not great. Every time I think about it I cry. What should I do? As you can see from my post I'm just very emotionally distraught.
Update: Ok so I just had a long chat with my cousin. He said the Dr's in India are suggested Chemo as well as surgery. He is very upset as it seems just too much for an 8 month old. He wants to know what his options are before he goes in for treatment. He says he is fine financially for now as would rather take a loan and get the right treatment for his son than just go blindly with what is being told. He asked me to help with identifying treatment options in the US. We know the childrens cancer treatment centers are great here. I will post this on other boards too but wanted to ask those who have a background in medical field, how do I research the best treatment options? Hospitals? Dr's. I mean I can start with google and go from there but any suggestions on who can help? Any resources I can tap into directly? Please any suggestions to help him identify a good treatment plan for his son?
Update: Ok so I just had a long chat with my cousin. He said the Dr's in India are suggested Chemo as well as surgery. He is very upset as it seems just too much for an 8 month old. He wants to know what his options are before he goes in for treatment. He says he is fine financially for now as would rather take a loan and get the right treatment for his son than just go blindly with what is being told. He asked me to help with identifying treatment options in the US. We know the childrens cancer treatment centers are great here. I will post this on other boards too but wanted to ask those who have a background in medical field, how do I research the best treatment options? Hospitals? Dr's. I mean I can start with google and go from there but any suggestions on who can help? Any resources I can tap into directly? Please any suggestions to help him identify a good treatment plan for his son?
This discussion has been closed.
Re: Update: Need advice on medical research. I am so heartbroken! (warning sick child involved)
Offering the fundraiser is a good idea.
Chemo is pretty standard cancer treatment and likely to be recommended by doctors here as well. The type of chemo is what is important.
If you want to reach out to doctors here, you'll need all his medical records as well as permission to share them and permission for the doctors to see them. Then you need to find a children's cancer specialist or better yet, a specialist in the type of cancer the baby has. You'll need to pay for the consult and the doctor may request more tests.
I will ask my cousin what type of chemo they are asking him to go under because he seems to be freaked out with just the idea of it.
Then you take those reports and your job is to find an expert to analyze and make recommendations. You're not going to be able to look at studies and decide the best cure. Studies don't equal a medical education and you need that background. Your job should be to find experts to look at this baby's records, not to look at treatments. Look for hospitals that take international patients, like Johns Hopkins. You understanding the medical terms won't help. You need experts in that field. Cancer is incredibly specialized.
Also... If they're recommending chemo that's likely needed to save the baby's life. If they want to roll the dice and just do surgery, or opt out and enjoy the time they have left, support them.
________________________________________________________________________
Baby Amelia Ruth:
3 years "trying" on our own
4 Rounds of Clomid; 1 miscarriage; 1 D&C; 2 more rounds of Clomid & many tears...
Baby Girl due 3/7/14, born 2/23/14 - 7 pounds, 9 ounces, and amazing
Well, they're a research hospital (so cases need to fit) that relies on public donations. One way they get great donations is to have a high cure rate... By selecting cases that will most likely be cured.
They're not evil. They can't take all cases and they do a lot of good, but it's not as simple as "get cancer, go there".
From what I know, both surgery and chemo are part of the treatment plans for this kind of cancer,
If I were you, I would chose an academic center for treatment, as they will have access to more options in the way of clinical trials if initial treatment isn't successful.
If it were me, I'd call Dana Farber first...that would be my first choice for treatment.
Good luck....I'll be sending prayers