Good morning. This morning I find myself truly at a new place in Sydney's diagnosis of neuroblastoma. My mind is racing because of something that I thought I would never find (simply because I have talked to nearly every expert in the world to no avail) has shown up very unexpectedly on my doorstep.
It should not surprise you that not a single day goes by that I don't think about Sydney's neuroblastoma. I can't recall a day that I haven't thought about either the lesion on Sydney's arm or the original lesion that appeared on her leg that led us into the world of our supposed relapse over 4 years ago. I have been yet to conclusively prove that those lesions were (are) neuroblastoma or whether they were(are) something more benign. To this day it has been a complete unknown and while I have heard of other similar cases on occasion I have never been able to identify another child - at least one beyond rumor. I think the biggest reason for my consistent and ever present worry is the lack of knowing what the lesion is. I know it could be neuroblastoma. I also know that it could be something else. However, I have never had a definitive "what else." I have never has anything else to potentially call these lesions. I never had a differential diagnosis. I never had another child that I knew was similar. This only added to my worry.
Yesterday, very much by accident, I ran across a posting by another family who had a child with stage IV neuroblastoma who has also had multiple lesions very similar to Sydney's. This family has been through the multitudinous scans and the threats of relapse even more than Sydney and our family. Each time they received similar results. Bone scan and MRI showed an abnormal lesion or lesions. Everything else (marrows, MIBG) came back negative. Even after going through open biopsies, they were never able to confirm a neuroblastoma relapse. Sound familiar? Eventually they were diagnosed with CRMO or Chronic Recurrent Multi focal Osteomyelitis. It appears that this is somewhat of a catchall condition for something that is not completely understood. But, it is something. It is a name. It is a differential diagnosis. I have written the family to find out more about their diagnosis and history. It is still early but I would be lying if I did not say that I was excited by this. I don't know that this is what Sydney has but this is the first time I could ever identify a specific condition or a specific child which could help to explain Sydney's lesions.
CRMO could be some peace. It could be an answer. It could be an answer for my purpose.
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2 comments:
Mark - I could almost hear relief in your post today. I hope that you'll hear back from the family and get the info you want and need.
hey dungans-
that sounds so promising, hope it's what you find. it's not cool to have any lesions of any type on a child who has been through cancer. we are watching you guys and am thankful for your hard work you do for all us NB families. thanks for keeping us all updated.
see you soon.
Crys
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