Thank you, X, for prompting me to check in and give you all an update. It has been a while.
We encountered so many problems with our baby's followup care "at home" that we decided to return to Boston, thousands of miles away. At Childrens Hospital Boston (CHB), the Advanced Fetal Care Center manages several fetal sacrococcygeal teratomas (SCTs) per year, and I suppose CHB sees additional teratoma patients. Oncology is literally next door, at the Dana Farber Cancer Institute.
Needing appointments on short notice but not being an emergency, we were put on waiting lists for last-minute openings: first the MRI, some blood work and other tests, then consultations with our surgeon and our oncologist. To get all that accomplished, we allowed 3 weeks and we needed all 3 weeks, although we spent just 5 days visiting the hospital complex. DH was able to "telecommute" to work on some days, so he did not need to use 3 weeks of sick leave.
Our baby's MRI (pelvis and abdomen) showed "postoperative changes" where her SCT used to be, and her AFP tumor marker was again a little worse. So there is no obvious tumor but the AFP raises the "index of suspicion" that we are dealing not just with teratoma, but also with endodermal sinus tumor. Watch and wait is really hard, but I am thankful that our situation is not worse.
Given the expense, time, and effort involved in our traveling to Boston for each MRI, our plan now is to repeat the MRI only every 6 months, unless there is a pressing need to return sooner, while checking the AFP every month. I am waiting anxiously for the June AFP result.
mom to 9 month old girl, born @ 40w, neonatal surgery x 7cm Altman III SCT w coccyx, grade 1 immature teratoma, AFP suspicious, WAW
See Wikipedia for ready made translations of some terms. WAW = watch and wait.
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