Just Diagnosed-Need Info


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11-07-08 12:04 PM
Just Diagnosed-Need Info

My wife and I are expecting twins, and one of them was just diagnosed (inutro) with Cystic Neuroblastoma.  First, I just need information.  Second, what can I do?


Thanks In Advance


11-10-08 01:19 PM
Re: Just Diagnosed-Need Info


I can only imagine the fear that you and your wifeare going through.  While it is awful to hear that your newborn child has a cancer such as neuroblastoma I want you to know that the prognosis is generally very good for children that are diagnosed at this age.  This is direct contrast to those children that are diagnosed over the age of 18 months.  One of the best resources for treatment is the Parent's Handbook which is found on this website.  THere is great information on many aspects of diagnosis and should give you a good idea of what questions to ask.  There is little on neuroblastoma in utero in the handbook but it does list many of the necessary resources and contacts.  When are your twins due?  Have you been able to contact a neuroblastoma specialist?  Depending on your location I would be glad to suggest a few.  The proper course of action is very dependent on exactly what has been found.  If you would like to discuss this further please feel free to email or call.  You can reach me at 817-846-6085.  I can't guarantee all of the answers but I can certainly point you in the right direction.

With hope,


11-10-08 02:52 PM
Re: Just Diagnosed-Need Info

Hi Bill,

I can completely relate to your situation.  My son, Benjamin, was also diagnosed in utero.  I want to second the information that Mark posted; the prognosis for babies is much better than toddlers.  I know there is a lot to think about right now and if I can be of any help to you, please feel free to call me at (517)339-3360 or e-mail me. 

Candace (mom to Benjamin 4 years old)