Neuroblastoma is one of the most common and lethal types of childhood cancers. In a paper published online today in OncoTarget, a researcher at the University of Texas Health Science Center at San Antonio unveils the important role of microRNAs in regulating neuroblastoma development, pointing to new therapeutic possibilities.
Ben’s scans came back clean today. The MIBG showed two small spots that the docs will watch but he’s still NED.
Feb. 21 is gone and, honestly, I’ve been putting off writing this post for the last few days. Remembering that day, and the few days leading up to it, is not easy. If I had one wish to be granted, it would be that those days never happened, especially Feb. 21. Sadly, wishes are just a fantasy and it did happen…
That was the day that we were told Ben had cancer. That was the day I felt like I was punched in the gut. I remember it vividly, as most parents do the first time they get a diagnosis. We were waiting in the hospital room… waiting for the doctors to come back and tell us why our son was so sick. We had initially been told it was a bone infection, constipation and a myriad of other ‘normal’ childhood illnesses. Sadly, cancer mimics many of those same diseases, throwing off many experienced pediatricians onto the path of misdiagnosis.
It wasn’t until Ben’s fevers didn’t go away that we finally got him into the ER. I remember the 6 hour wait. Ben lay in my arms most of the time, listless and sweating profusely. Little did we know that his little body was riddled with cancer. I prayed to God that whatever it was could be handled with a few antibiotics and we’d be on our way in a few hours. Even in my darkest moments sitting there in the ER I had no thoughts of this being cancer. It was foreign to me. Ben was just sick with some unknown bug.
How wrong I was.
Back to that fateful day… I often wondered why the Lutheran pastor came up to visit us. I don’t know if it was God or the medical staff preparing us for what was to come. Nonetheless, he did come, and he was helpful on a spiritual level. He did manage to bring some peace to the unknown.
Then the staff came. I can’t recall which person told us, I think it was Dr. Nick, a young oncologist, a resident, I believe.
The words struck me like an atom bomb. My mind went blank for a few seconds as I digested what he was saying. Again, cancer was foreign, I’d never actually known anyone who had it. I actually said at one point, I hope it’s not leukemia because that’s really the only cancer I heard of.
[Note: Little did I know that there are many, many variants of Leukemia and most have very high cure rates. Neuroblastoma, at the time of Ben's DX was about a 30% cure rate compared to Leukemia in the high 80s.]
The doctors showed us a cat scan of Ben’s pelvis area. It was riddled with cancer and looked like Swiss cheese. They said treatment would begin immediately with high-does chemo. Names like Vincristine, Cysplatin and Cyclophosphamide floated about the room.
It was a lot to take in.
It still is.
Ben has been through a lot in the last ten years. Two relapses, multiple experiment treatments, surgeries… It hasn’t really let up.
Despite all this he’s grown into a strong and courageous young man. To paraphrase one of my favorite movie quotes:
He’s short and skinny, but he’s strong.
(Planes, Trains and Automobiles.
God has blessed me with a wonderful son and I’m doing everything I can to make sure that I spend as much time with him as possible. You should do the same with your kids… every day.
I knew those extra computer cycles would pay off someday!
If you’re not participating in some way, you should. They have a bunch of worthy research.
Our research team at the Chiba Cancer Center in Japan has been working to develop a new treatment for neuroblastoma. With the help of volunteers participating in the IBM World Community Grid initiative, we have just discovered seven new drug candidates that could potentially be used in new medicines that fight childhood neuroblastoma. These drug candidates work by activating a self-destruct mechanism present in neuroblastoma cancer cells, killing them without affecting healthy cells.
File this one under the ‘I wish we had known…’ category.
Ben has severe hearing loss in both ears and has to wear hearing aids for the rest of his life. Frankly, though, I’ll take that over not receiving the cisplatin and other platinum based chemos.
Something like this would be very good to have for Neuroblastoma. One of the concerns I had with Ben’s first relapse was making sure that the surgeon got out all of the cancer. We even had Dr. Laqualia, at Sloan Kettering, open Ben again to make sure it was all gone. This would make a skilled surgeon a master, for sure, and would increase the survival rate of NB kids.
Very interesting… I don’t think Ben has PTSD, mainly because most of his treatment has been while he’s young. That being said, it’s something I’ll certainly be on the lookout for.
A St. Jude Children’s Research Hospital study found that despite being diagnosed with life-threatening illnesses, childhood cancer patients are no more likely than their healthy peers to develop post-traumatic stress disorder (PTSD). The research appears in the current online edition of the Journal of Clinical Oncology.