Thursday, September 01, 2005


We met with the hematologist/oncologist Dr. Dunn who seemed less than encouraging. She underscored the great rarity of this type of tumor--Choroid plexus carcinoma--overall and the much greater rarity in infants. She spoke of a 70 week course of chemotheraopy and discussed the terrible side-effects including of course the ones we are all familiar with --nausea, vomiting, hair loss--but also talked about hearing loss and said that "many kids who have this chemo end up with hearing aids". She painted a pretty bleak picture. She also gave a much lower survival percentage than other information I looked up. I know each case is individual but I am planning on calling St. Jude tomorrow to discuss options with them and to look up all the information I can find. IF we do go on with treatment here, he will have surgery next week sometime to insert the port in an artery near his heart to deliver the chemo.

Other than that, he is doing fairly well, he still has the feeding tube, the speech person couldn't get up to look at him today so hopefully tomorrow. Both of us have been holding him, taking turns, nearly all day and it has been wonderful. He is so much more peaceful and content in our arms. I can tell for sure that he knows who is holding him and he recognizes my touch and my voice.

They have removed everything but the feed tube and will be moving him to the regular pediatric unit this evening or tomorrow mornign. So if you visit, we'll have a different phone number and room. I don't have any idea what room yet. The opthamologists visited today to check out his vision--I reported that I don't think he can see. And their tests showed that he is perceivign light and visual stimulus the way he should--the retina, cornea and pupil are all workign properly--but he is not tracking or responding to startle tests. They are ordering a EEG-like test that has leads hooked to the occipital area of the brain to test what brain activity occurs when there is stimulus in front of the eyes. It may be a temporary problem due to the trauma of the surgery. I think though, I have seen him focused on me a few times today.

I have a lot of mixed emotions today--I feel great that he is doing so much better right now, in the present moment. and not so great at all as a result of our conversation with the Heemonk. We'll see what further information I can come up with.

I will keep you all posted. Keep on praying and sending love---

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