Scan Results

Joe here.

We finally talked to the Doctor about Jackson's scans on Friday afternoon.  We had an appointment to get the results on Friday morning, but they didn't have them ready, so we left and they would call us when it came in.  This seemed very strange to me, since, normally when the Radiologist report isn't in yet, the Dr. calls down and has them look at it and takes notes over the phone, and passed the info on to us.  This did not happen.

We wait and wait and many hours later, I call, and am told the computers are going slow, the appointment nurse will look up the records and call us back in a few minutes.  About 20 minutes later, the Oncologist calls me directly and tells me that the MIBG was fine, but that one of the MRIs shows something in the same area of Jackson's original tumor that was not on the last scan.  

She wants to wait 3 months and rescan, instead of the 6 months that we would have waited, had there been no news.  I said okay over the phone, but did not really have a chance to think of any questions, as I was in a bit of a state of shock. 

We thought about it for a bit, and I called Radiology and they got me the CDs with the info including the new scans, and all older scans, and I went to pick them up Friday around 4pm.  I overnighted them to MSKCC (Memorial Sloan Kettering Cancer) Center) in NYC, and after talking to Sarah in Dr. L's office, was assured that they would review the scans on Tuesday (April 20) and let us know their opinion.  

The thought of waiting 3 months is very scary.  We are very nervous to hear what they think.  The onc here is not even sure the area is large enough to biopsy, but I am a little reassured that the MIBG didn't show any hot spots.  Unfortunately, they are not always 100% accurate, as some kids are MIBG avid and then later on are not MIBG avid.  

Also, we are waiting to hear the HMA/VMA numbers which could indicate NB activity if the numbers are raised.  We should know tomorrow or Tuesday I hope.

Needless to say, we are very concerned, and scared and are looking for answers.  We are considering what to do about building the new house we have been planning for so long.  If this is a relapse, I don't think we will be devoting so many resources (time, energy, and money) into the project right now.  Time will tell.

-Joe