No Idea What Will Happen

My apologies to all of you who so faithfully read the website and that I have not been keeping you up to date.  I hadn't seen Noah in almost two months and I had never been around him when he was feeling well.  I was determined to spend some quality time with him before he had to begin his mini stem cell rescue and I did.  It is so hard for me to be so far away.  The only times I was here prior to now was when he was going through chemo and was really sick from its after effects.  We really had a fun time together and he has been my main focus.  I hated to have to leave him today in Tucson but I brought Sarah back to Scottsdale so that Lara and Andy could concentrate on just Noah for the next week.

I am grateful to Brigit for updating the last journal entry because I know how much time it takes to do a journal.  We always try to get all of our medical facts straight as to not misinform all of you.  Neither of us has any kind of medical background so that we rely on Lara for our information.  I can assure you that this week has been such a mixed bag of information that we weren't sure what to write.

Most of what Brigit put in her journal is true but the doctors never used the word "relapse" but that was what was alluded to so that was our greatest fear.   All of this began Monday evening when Noah was having a sleep over with his two good buds Curtis and Colin.   Dr. Graham called Lara to tell her that he was very concerned about the MIBG scans because there had been no evidence of Neuroblastoma on the second scan and there was on the third.  The problem was that the radiologist in Phoenix who had read the third MIBG scan was only comparing it to the first scan and thought that all that was so showing up were residual cells.  That would not have been such a big deal.  The fact that the second scan was clean and the third wasn't meant to the doctors that Noah was becoming resistant to chemo.  If that were the case then going through stem cell rescue wouldn't be effective in of itself.  Dr. Graham then said that maybe they would have to try to do a combination of radiation, chemo and accutane simutaneously.  Lara knew enough about all of these different treatments that Noah's body would never be able to sustain these all at once.

Monday night was crazy.  I still wasn't sure what Lara was trying to tell me but all I knew was that there were four little kids here having a great time with the big sleep over and Lara was at her computer or on the phone.  I also forgot to mention that Andy was in Orlando for his company's annual meeting.  He is having to attend meetings, trying to close deals because he knows Tucson is coming up and Lara calling him to tell him that everything scheduled for Noah is falling apart.  I can't even imagine what he was going through.  He must have thought that he was in the middle of a nightmare and only if it had been.  This was his reality. 

By Tuesday evening, Lara spoke to Dr. Graham and told him that she wanted as many opinions as could be obtained before any drastic decisions were made.  They both agreed that more testing had to be done before they could proceed with anything.  The other thing that came to light on Tuesday that was a mystery was why when three "hot spots" had shown up on the PET scan but not the one that showed up on the third MIGB scan.  The simple answer to that was that Noah's legs hadn't been scanned in the PET scan.  Yes, it is all very crazy and very confusing so that is why Lara is now saying no one knows for sure what will happen.

What everyone agreed to is that more tests were done today.  Both an MRI and a CT scan were done and no evidence of a tumor showed up on the MRI.  The preliminary results of the CT scan were negative as well.  This has pleased the doctors but no one really knows what all this means.  Why something showed up on the MIBG scan and on nothing else is still the great mystery.

Noah was admitted to UofA Hospital today and will begin his mini stem cell rescue tomorrow.  If nothing else this buys time for at least four weeks to form back up plans if they are needed.  Noah will be receiving the same chemicals used in past chemo therapies for four days but at five times the intensity that he received in the past.  Next Thursday, he will receive the stem cells that were harvested from him and then frozen.  He will then be allowed to leave the hospital and will be living in the house that the family rented in Tucson.  He will be monitored everyday for three weeks after that as an out patient.  This is so that he will get the usual transfusions, platelets and various medications that are needed on a day to day basis.

I would have to say that the most hopeful thing that we've heard all week is that the MRI came up clean.  But we still don't know exactly what any or all of this means.  Another round of scans and tests will be ordered after Noah recovers from his mini stem cell rescue.  Hopefully, we will have a better and completely positive outcome at that time.  Needless to say we have all been on an emotional roller coaster all this week.  We thought we knew what we were in for but we hadn't a clue.

As always, I am asking for prayers.  Pray that Noah's little body isn't resistent to the chemo and that the next scans will all be clean.  And say a prayer of thanks that the MRI was clean today.  Remember to pray that Lara and Andy keep up their incredible strength and wisdom to keep Noah going forward.

Much love, Grandma