Brooke and I spent Thursday-Sunday in Chicago for the CNCF Neuroblastoma Parent Conference. NB specialists from all over the world came to present info about NB and mostly about past, present and future clinical trials. It was such a great opportunity to be able to meet with all these doctors/researchers and learn more about what is available, especially for kids who have relapsed. Equally wonderful was getting to meet so many more NB families. Brooke had a great time as usual and made a ton of new friends. We also got to visit with good friends that live in Chicago and also our friends from South Dakota drove all the way to Chicago just to spend a few hours with us!!!
This week we will be spending most of our time in and out of CHOP for scans, bone marrow biopsy, surgery to have a port placed and dr. appts. We are in the office now for pre-op stuff. Already met with the surgeon, had iv placed and labs drawn in oncology clinic, drank all the contrast (in record time), had CT scan of head, neck, thoracic and abdominal areas and had MIBG injection with nuclear medicine. Whew!
We will be back in tomorrow morning for MIBG, spect scans and clinic. Will try to post again tomorrow with any updates.
Please pray for stable or better scans this week!
Blessings,
Amy
May God smile upon this special girl.
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ReplyDeleteContinuing to lift Brooke and Amy up in prayer. Brooke is on First Baptist Church of Delmar's prayer list. God is with you though this struggle.
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