Day 259 - Update from Oncologists

But first, let me take a selfie!

We got a chance to sit down with our oncologist this afternoon.  With all that has happened in the last month (the flu, the infection, the blood clot, the belly almost rupturing, possible fungal infection... oh, and Christmas), we thought it was time to sit down and re-evaluate where we are and what we can expect in the future.

First off, Ryan is doing great.  He is still in remission, and they have every reason to think that he will stay that way.  He has tolerated the chemotherapy like a champ and we are so amazingly grateful.  No weight loss, very minimal problems with nausea, a beautiful bald head (somewhere between Lex Luthor and Vin Diesel) and he is content with way too many legos and Netflix movies.

We are currently in the middle of a phase called Delayed Intensification (DI), which is advertised as being 'pretty bad'.  This phase is officially 56 days (8 weeks), however, we have been delayed due to low counts.  Since Ryan reacts so well to the chemo, his body needs a little extra time to recover from each dose.  We are on about day 26 of this phase, which means we need at least 30ish more days.  His counts came up a little from yesterday (from 130 to 350) and we are hoping he will get back up to 750 in a few more days (hopefully, by Monday).  Once we get back up there, we get our next couple of doses, which hopefully will not have a significant affect on his counts.

We won't be out of the DI phase until the first few weeks of February.  Then, we get to move on to the 'last' phase, before maintenance (which is a whole different story).  The last phase is our replacement for radiation therapy, which will involve a higher dose of one of the chemo drugs.  He has had a really good reaction to this drug, so we are hoping that it won't be too bad.  This phase will also last at least 56 days (another 2 months), depending on how he reacts to the higher dose.

So, we expect that we won't even be discussing the 'end' until mid May, which would be just over a year since we started.  And, once we 'finish', we have 3 more years of 'maintenance', where we will still have monthly chemo treatments.  But, we can have some of those in Great Falls, so we can come home.

Patrick and I were talking about the information from the doctors and we both are totally okay with the timeline.  We would much rather have 12-15 months of treatment that is not too terrible than have a shorter time of misery.  We expected that the treatment would be so awful and dangerous (taking into account our transplant and our TPN and our history), and so far (knock on wood), things have not been terrible.  And we have such wonderful friends and family supporting us!  I really cannot complain!!

One funny from the doctor today... she was working with another doctor this week, discussing how to proceed with Ryan (apparently, he is the topic of many conversations around the hospital), and they ended up referencing an older medical journal to get some ideas.  She laughed and said how funny it is that with all our new innovations and technology, sometimes it's good to go back and see how things 'used to be done'... Leave it to Ryan to have them scratching their heads and finding information in the strangest places.

Thank you all for the continued prayers and good thoughts!!