We aren't closing this blog down but we have added a family blog that we hope to update more frequently. With the blessing of Ben's current health, it is nice to be able to focus on our family as a whole. Family and friends feel free to check us out at http://www.eightsgr8.blogspot.com/.
As I said Ben is doing well. We have moved our family and changed insurance....an interesting process with a child like Ben. We "think" the new insurance has accepted him but won't feel really secure until we see them actually cover a claim. We are also trying to figure out doctors. There is an MRI machine in town so we may be able to get his MRI's here. If not we will travel to either St George or Salt Lake, 1 or 4 hours away. We are unsure of whether we need to find an oncologist or if we can just see our family practice doctor. Hopefully we can get some good advice from our team in Seattle.
Anyway, all is well for now and we are enjoying one another!
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Hi Cari - just saw your comment on Zoe's site. I hope Cory & Co. had some ideas for you re: long-term follow-up for Ben. My recommendation would be to hook up with the nearest children's hospital. A regular pediatrician can keep up with a lot of it, but it seems good to maintain a connection with a childhood cancer specialist. Zoe's regular pediatrician is now keeping track of regular colds, infections, catching up on vaccines, monitoring growth and development. But we're still involved with Seattle Children's for audiology, neurology, neuropsychology, endocrinology, g-tube feeding and home care supplies, and so on. Not sure what Ben has going on, but many ATRT survivors benefit from continued monitoring of hearing, radiation-related impacts on neurological and neurocognitive functioning, endocrine (hormone) issues, emotional/behavioral impacts of treatment, physical or occupational therapy needs, and so on. Not to mention continued monitoring for tumor recurrence. All of that is usually available in one location at a good children's hospital. Hopefully you have one that is reasonably close to you... Glad to hear that things are going okay with your family's transition to a new state. And glad that Ben is trooping along with Zoe in ATRT Survivor Land!
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