Medical Monday: CT and Results

We did Clayton's follow-up CT to check on the lesions on his liver last Thursday.  It was an odd experience in and of itself.  Clayton woke up with what appeared to be a migraine, but we went to the hospital anyway, knowing that if it were anything more we would be heading to the right place.  Since he was NPO for his sedation, I couldn't give him tylenol, so my sweet baby was forced to endure.  He spent the entire morning from home to hospital to waiting on CT without even looking at a single piece of technology.  It was completely unlike him.  When we arrived at the hospital, there was a wheelchair outside and since I was having to carry him due to his not feeling well, I had my mom sit in the wheelchair and hold him while I pushed.  He never once got up.  Again, COMPLETELY unlike him.  Usually he never sits still.

The only good thing from this is that we were able to do the CT without sedation.  Which was a huge win, but again not normal for us.  Once it was done, we left the hospital only to get a call to head to the oncology clinic because his blood test showed his blood sugar was urgently low (33).  Luckily, right after the CT, I was able to give him Tylenol which helped perk him up enough that he had already started to eat by the time I got the call.  So by the time we got him to the clinic and checked his blood sugar again, his values were back in the normal range.  So for now, we are just keeping an eye on his blood sugar to see if it is going to become a problem.  Per doctors instructions.

Monday we went back to the oncology clinic to see the doctor and get results.  Clayton was absolutely giddy for this visit.  He actually started clapping when he saw the nurse coming to get us.

Good news is they aren't using the word cancer...Bad news is they aren't ruling it out.  The lesion from his liver we were watching has not grown, but there is now a new lesion.  The doctor said that sometimes they can see something like this as a result of chemo therapy, but that they are of course always worried about a relapse of his neuroblastoma.  They are suspicious enough that they want to further investigate by doing a MIBG in the coming weeks.  So we are waiting on that to be scheduled.

The plan is that after the MIBG the doctors will decide if they want us to resume scanning every three months or every six months depending on what they find.  At this point they aren't saying anything beyond that.  The only speculation I have to offer is that they keep watching these spots and depending on what the tests show and any changes in the lesions they may decide to biopsy at some point.  But I don't think we are there yet unless the MIBG shows something new.

For now, I'm exhausted coming off an anxiety attack.  Sometimes I have to deal with my own feelings and concerns before I can deal with or respond to the concerns of others.  And sometimes I'm harboring too much inside to even deal with questions which is why for my part, I have the blog.  I get that our family particularly wants to know and I'm not in the business of hiding anything from them; but for me, all of this is so much more than just getting answers.  It is my life... it is where I'm going to be tomorrow or what I'm going to be doing, or what hospital I'm going to be staying at, etc.  And sometimes I have to process my own thoughts and anxieties over the unwanted possibilities before I can handle the anxieties of all those who love Clayton.  Otherwise, I find myself in a situation like yesterday, where I'm trying to deal with my concerns and then the concerns of those around me and it just overflows resulting in an anxiety attack.  I think that's why the blog works so well for me.  I can put the information out there without taking in the concerns of anyone else.  It is what works best for me and I need people (cough...parents...cough) to please just go with it for my health.

I'll be back later this week with a secret I've been harboring about Clayton...so stay tuned.