tag:blogger.com,1999:blog-1506064328898764765.post5574663301686777526..comments2023-08-29T02:45:40.934-05:00Comments on Dad's Diary - a journey through childhood cancer: Relapse's lack of directionMark Dunganhttp://www.blogger.com/profile/18139784704905490034noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-1506064328898764765.post-30169954161213174312010-01-07T12:11:29.474-06:002010-01-07T12:11:29.474-06:00Oh Anon..true. Children are unique, as are their c...Oh Anon..true. Children are unique, as are their cases especially during relapse. What I meant by relapse protocol was really a starting point, like there is during frontline treatment. So that it is less often that parents just get thrown a bunch of options and have to pick one...because that is horrible and so much stress!!!<br /><br />And praying that your kiddo stays out of the R world!~Dawn~https://www.blogger.com/profile/14682446219403000777noreply@blogger.comtag:blogger.com,1999:blog-1506064328898764765.post-17898092097286271752010-01-06T23:01:35.312-06:002010-01-06T23:01:35.312-06:00Best wishes to the relapse families. Your passion...Best wishes to the relapse families. Your passion for NB education and communication is commendable.<br /><br />Happy new year!Team Russihttps://www.blogger.com/profile/12288652617210919674noreply@blogger.comtag:blogger.com,1999:blog-1506064328898764765.post-88303625903702046492010-01-06T18:42:09.861-06:002010-01-06T18:42:09.861-06:00The problem with relapse seems to be that each chi...The problem with relapse seems to be that each child's treatment should be completely unique, therefore a "relapse protocol" seems too narrow a road to travel. I'm speaking a bit out of turn, since we have not had a relapse happen (still mid-treatment), but I think that the key to NB is individualized, specific treatment based on the that child's tumor's makeup. Even the staging is off.. Is the child Stage IV MYCN amplified or non-amp? Diploidy or near-triploidy? Which chromosomes are deleted? Mark, you know far more about that part than I do but that just seems to be key. Parents need the histology report so they can have that information if they face a relapse, and doctors need to start using that information to treat.<br />Btw, I love reading about your kiddos and their adventures but it was nice to read a NB entry today. You give me encouragement!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1506064328898764765.post-42584841010386852952010-01-06T11:44:56.932-06:002010-01-06T11:44:56.932-06:00Mark, I so understand the frustration. We heard th...Mark, I so understand the frustration. We heard the dreaded R word twice. It's more awful than there are words to describe. I know far too many who wander through relapse feeling the same way. We were blessed by our oncologist (who was disliked by many parents but with whom we had an excellent relationship for whatever reason), but I've seen that's not always the norm. There is a need for a cohesive relapse protocol that is effective every bit as much as there is for up-front treatment, because until there is some breakthrough, relapse is going to continue to take our children.~Dawn~https://www.blogger.com/profile/14682446219403000777noreply@blogger.com