We beat it! But we have some other problems!


(artemis) #1

hello!My little girl Rafaela was born with a mass in her thorax (thoracic neuroblastoma,favorable prognosis) .She took 2 rounds of chemo when she was 17 days old,surgery when she was 3 months old .Since then she is cancer free.Rafaela is now 4 years old .The tumor caused a gross motor function problem ,despite the fact that all the MRIs seem to be normal .This year she has managed to make her first steps and physicotherapy helps a lot.She wears AFOs because her ankles turn inwards .Another problem i s her growth delay.Shes is under the growth curves and she grows with her own rythms.She was always tiny.The IGF-1 levels are normal.Now the endocrinologist told us to do the growth hormone test.Has anyone else similar problems after neuroblastoma treatement?


(barbara) #2

Hello!
My son was diagnosed with stage 4 high risk neuroblastoma when he was 9 month old and he is now 2 and a half. We finished treatment in February this year and everything is good with that so far. But he also has a developmental delay and isn’t able to walk or talk yet. He has other problems like absence epilepsy and a congenital heart defect (VSD) as well (and as a side note: he is very tall for his age), so we induced genetic testing (they did Whole Exome Sequencing) and it turned out, that he has Snyder Robinson Syndrome. He is the first one with this syndrome who suffered from cancer, but there are other genetic disorders which also have an increased risk of developing neuroblastoma, for example Sotos Syndrome (which I would exclude in your case, because overgrowth is one of the symptoms). I just want to point out that maybe genetic testing is an option you haven’t considered yet. Good luck for finding some answers!


(artemis) #3

We have already had a genetic test(array-CGH) and it is normal.I wish the best for your baby!!