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April 15, 2006

By Laurel | April 15, 2006

Happy Easter Eve!
Sorry to leave everyone waiting. The good news is that both the CT and the MIBG were clear. The spot we were worried about has shrunk (I haven’t read the report yet so don’t have exact details) but Dr. Bolotin told Neil that the radiologist even went so far as to say in the report that there is “no evidence of recurrent neuroblastoma” which is fantastic. The bad news is that there is a new spot on the MRI that showed up right above the left knee. Dr. Bolotin told us this during the bone marrow biopsy right before the MIBG scan. We asked her how worried we should be and she said “very worried” and that if the MIBG lit up we should start radiation immediately and then start thinking about oral chemo. If the MIBG were to be clear, she thought we could still be ok and we’d do another MRI in three to four weeks to see what we see.
All four of us were up there and Andrew had been waiting at the hospital all day and was completely melting down at the point of the MIBG starting. The initial plan was for me to take him back to Cathy’s in Irvine for the night and Neil and Sam would meet us there in the morning and then we’d stay the night and do Easter egg hunts with all the kids on Saturday but I wanted to see if I could stay and see the MIBG. It was not be though, Andrew had had it so I left Neil with Sammy and the MIBG just starting and he promised to call me the minute he saw the results. He said it was one of the hardest things he’d ever done to sit there and watch the screen. He called me about 20 minutes after the scan started to tell me it looked clear and then he waited for the radiologist to read it twenty minutes later and it was completely clear. Talk about a roller coaster week. We are both exhausted. The second, sectional MIBG Friday morning was also clear. So, the summary is that all the scans were clean except for the very small spot on the MRI. Since none of the other scans showed anything, we’re hoping for the best. Dr. Bolotin also said that the lesions that have been showing up on the MRI on his legs since diagnosis are much better. On one leg the lesion is totally gone and the other is nearly gone. Dr. Bolotin said it would be odd for the other two lesions to be going away while a new one was growing in a different spot. I’m, as usual, reaching for all the positive signs but we think we are in good shape with all the other scans clean. Dr. Rodnay, our radiologist who we loved during radiation, said an MRI spot could be many things and not to worry yet. It seems like there is always going to be something to worry about. Our wonderful listserv parents have told us that it doesn’t get much better but obviously we’d rather have scares than the real thing. So, hopefully, that’s all this is.
The kids had a blast at Cathy’s with Ally, Andrew and Ava. They played hide and seek and took all the comforters off the beds and made a big pile to jump into. Cathy’s’ so gracious and mellow about it all. It was great to stay there for a couple of days. The kids went to the big neighborhood Easter Egg hunt today near Cathy’s house and had a great time. I think Sam hunted Easter Eggs with every age group. Andrew took his stuffed dog, Redongelo, on all of the jumpy slides and carried him around all day. While he and Cathy’s Andrew were having leaf boat races in the creek, I turned quickly to look for Sam at the egg hunt with Ally and Cathy’s mom. When I turned around Redongelo was floating in the middle of the creek and Andy said that “he went swimming.” Guess who got to carry around a wet dirty stuffed dog the rest of the day? 😉 The kids went on the jumpy slide, got their faces painted and were tired out enough to sleep all the way to San Diego. They colored eggs with Mimi when they woke up and did some “practice egg hunts” in preparation for tomorrow.
Thanks to all for the prayers and good thoughts. Hope the Easter Bunny is good to everyone.
Margot

Topics: Progress Reports | Comments Off on April 15, 2006

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