A wonderful event has taken place at St. Jude that may prove a big step in saving the lives of children, like Vivi, who have rare brain cancers but are too young for traditional radiation.
St. Jude Children’s Research Hospital and the University of Florida Proton Therapy Institute have formed a collaboration to provide proton therapy for St. Jude patients. The announcement follows the approval of the first clinical study to evaluate the use of proton therapy for rare brain cancers in children younger than 3 years old.
Under the clinical protocol, St. Jude will refer patients to receive proton therapy at the UF Proton Therapy Institute in Jacksonville, Fla. The purpose of the clinical study is to improve response rates and decrease treatment-related side effects.
Proton therapy is being studied as a way to reduce potential damage to healthy tissue that may result from conventional radiation therapy. This is especially important in treating children with brain and spinal tumors to potentially avoid interference with development, growth and cognitive functioning.
I have known, of course, that at some point (and probably soon) there would be a research development or new avenue of treatment that had the potential to help Vivi or even cure her. Although this particular trial might not have been right for Vivi, I remember praying so hard for something in science to change so that she could receive radiation. For children with brain tumors, the ability to receive radiation dramatically improves prognosis. But those prayers (like so many) went unheeded.
Of course I am hopeful and thrilled for the families who will benefit from this treatment, and I am carefully considering that donations we made in Vivi's name to St. Jude were at least a small part of making this possible. But, that does not take away much of the sting associated with thinking that if this could have happened just one year sooner, perhaps Vivi could have participated or benefited from it.
No, I am not bitter - just sad.
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4 comments:
I'm sad, too. It does seem like radiation is a key factor in stopping ATRT, but it certainly isn't true for all children. It's impossible to know whether it would have made a difference for Vivi. I trust that she did what she came here to do, and left when she was done. (Though I don't understand why her purpose had to involve such heartbreak!) Hugs from another ATRT mama, Mette Earlywine
Mette, what a wise and kind thought. Thank you for saying that!
Ah, how bittersweet. I would like to think that the time you all spent at St Judes has helped the doctors and nurses to learn much much more about AT/RT in babies, and that it is (at least partly) because of the lovely Vivi and what you went through that perhaps other parents have fresh hope and might suffer a little less heartbreak than you did. It doesn't lessen your pain any, but maybe this is part of Vivi's legacy. Hugs to you!
Thinking of them all.Aiden's mom
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