Retinoblastoma and Lens Sparing Radiotherapy - Support Needed
July 6th, 2008 by janetA mother with a young boy with bilateral retinoblastoma in Australia wrote to me asking for help.
Her son lost one eye to retinoblastoma, and now the tumour in his other eye is growing again. The doctors have recommended lens sparing radiotherapy treatment in London.
As you can imagine, the mere fact of the tumour becoming active is frightening enough. Add to that having to go to another country to have a treatment you know nothing about, and you get a pretty traumatised family.
If anyone can help out here by relaying your experience of this treatment, this mother would greatly appreciate it.
I’ve done some research for her on the treatment, and referred her to some organisations that might be able to help. But ultimately, if she can get first hand experience from another parent, it’d make the events ahead so much easier for her.
So please, pass on your experience here.
Posted in Eye Cancer, Retinoblastoma. Permalink for this post: permalink.
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July 20th, 2008 at 2:36 pm
Hello there,
You may contact Miss Nancy Perez for more information about your case. Wills Eyes & Children Hospital of Philiadelphia have the most advanced study of this kind of disease.
Nancy Perez, Dept. Head Secretary Access Services, The Children’s Hospital of Philadelphia,34th Street & Civic Center Blvd.Philadelphia, PA 19104,Wanamaker Building, Suite 600Phone: 267-426-6298Fax: 267-426-6313Email: perezn@email.chop.edu
July 20th, 2008 at 2:53 pm
Much apreciated, Jeremy. I think this family have already gone to the UK for the treatment. I saw a story online about the family raising funds to go for emergency treatment. Hopefully they’ll have had all their questions answered by the specialists in the UK.