Reply from St. Jude Children's Hospital

Our oncologist, Dr. Massey, who sent all Theo's information to St. Jude's, came in to see me yesterday afternoon and to report on what she heard from them. They told her that the would do the exact same thing MCV has planned in the treatment protocol for chemotherapy. The reason that the protocol lists 70 weeks is because the doses are so small--and Theo--is so small. He may not actually have to go 70 weeks, it just depends on the CT scans and MRIs over the next several months. I spoke to Drs. Dunn and MAssey about the case of a little boy whose story my mom found online who had the same kind of tumor as Theo's. His surgery did not go well and his family went to St. Jude's. They gave him chemo for 10 weeks to "harden" the tumor and their surgeons removed it. Then he got 10 more weeks of chemo and then conformal radiation, which does a better job of targeting the tumor tissue and not the surrounding brain. He is doing fine now. He was a year and a half old. The St. Jude doctors said they knew the case, because even they have had very few cases of choroid plexus carcinoma, and that the difference was due mainly because of age and because of the problems with that child's first surgery. His doses of chemo were much higher and they said they would never irradiate a child under 1 year of age, which is what MCV said also. They will remain as consulting doctors on the case, but we are staying here. It is possible that after Theo's first birthday (which will be one HUGE party!), he may get radiation if it is indicated. But he may very well not need it. Again, it all just depends on the pictures and evaluations as we go along. I am glad that we got the extra input and feel much better about the treatment plan now. Dr. Massey is really wonderful and has done a lot to help me feel more at ease. We will probably start his chemo on Friday or Saturday depending on how he is doing following his surgery which is going on right now. The first round will take three days.

They haven't done the occipital lobe test yet--the one where they hook leads up to the back of his head where the vision center of the brain is located adn then flash several lights to see if there is brain activity. Remember the opthamologists said every thing in the actual eyes are working normally. But I think he is seeing more every day, he focuses on me for a minute and then looks away like it's just too hard for him to sustain the eye contact. When I called the nurse this morning to see how his night went, she had to stick him once to draw blood for labs (thank goodness it was only once) and she said, "he looked at me and made a face, cried for a second and went right back to sleep". But she too can tell that he looked at her. So, I think he is just taking his time healing. I think he sees a little better every day.

I will let you know how he is doing this evening. I don't expect any problems. They tell me these procedures are routine. It should take 3 to 4 hours to get everything done.

Talk to you soon---
Love,
Karla