Inconclusive

People often ask me what’s next for Caden.  For once, I felt like it was pretty straight forward: if he has evidence of disease, we’ll go do the T-cell trial in Houston; if he has no evidence of disease, we’ll start the DFMO trial in Salt Lake City.  This is purely based on the trial eligibility criteria.  Right now, he needs to show disease for the T-cell trial and he cannot have evidence of disease for this particular DFMO trial.  Jason and I have obviously talked through the “if this happens, then we’ll do this” for several different scenarios.  Half jokingly, I often feel like it can’t be as straight forward as it sounds.  We’ve been in this pediatric oncology world for too long to think anything is black and white.  The gray always seems to sneak in there.

 

So, the good, really great news is that Caden’s CT and MIBG scans show no evidence of disease.  There is always huge relief when that is the case.  His marrow looks good, except there are these two little cells that show up with the pathology staining, and the pathologist isn’t entirely convinced they are neuroblastoma cells.  Neuroblastoma cells are small, round, blue cells, and while the stain indicates they are “positive”, they don’t otherwise look like your typical neuroblastoma cell.  Dr. Park and our nurse practitioners are out of town, so the unfortunate doctor on call spent quite a bit of time on the phone with the pathologist to then explain it to me. Yes, we are thrilled with the news that things do not appear to have gotten worse!  But the joy is somewhat tempered by the ambiguity.  Even if he came back totally clear, we would think it was likely a false negative as he has not done any treatment since his last marrow test showed a few neuroblastoma cells.

 

Anyhoo, we are in that gray area of not knowing if he has evidence of disease or not.  The pathologist had a good sample to work with, but there was still some specimen remaining, so he’s going to stain and evaluate that to see if any neuroblastoma cells are clearly present.  This is not the norm, so I feel quite thankful to have such a thorough and determined pathologist.  He’s also going to take a careful look at the slides from May to see how these compare.  These results won’t be back until late Monday, however.  Our Texas appointments, if that’s where we end up going, will probably have to be pushed back a week.  But, here’s the kicker… We aren’t sure what all of this inconclusiveness means for his eligibility on the trials.  Is it possible that he doesn’t show enough evidence of disease for the T-cell trial and is not considered in remission for the DFMO trial?  Maybe, but we are hopeful at least one will work out.

 

So, limbo it is.  You’d think we’d be used to it.  Embrace the uncertainty!  Get used to me saying, “I don’t know.”  Don’t ask me what we’re doing next week.  It is what it is.  Expect the unexpected.  Pretty sure I’ve done a complete 180 from my know-it-all days.  Live in the now – that’s seriously all we’ve got!  We’ll let you know what the pathologist determines and what we do (or don’t do)…  We expect Monday, but goodness, we know better than to depend on it.

 

FC

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Comments

3 Replies

Erika Tetreault
By Erika Tetreault
Glad the CT and MIBG are clear but sorry you have to deal with that uncertainty. I hope the pathologist had a more definitive answer on Monday and you can move forward. Sending prayers and positive thoughts.
Kate Schwartz
By Kate Schwartz
It's good news but very frustrating! I'm sorry the "gray" seems to find its way into the puzzle to cloud things up. Hope you are able to get some definitive news with the restaining and can move onto your clear treatment path. Love to your family!
Patricia Traviglia
By Pat Traviglia, Upton
Dear Shraugers,
While it may seem a bit trivial, what you can depend on is the prayers and support of others who have been following you on this journey. We are here to let you know that whatever gray or other area you have to deal with, we are thinking of you ~ It is a good lesson for all to live in the now. Take care,