Day 321 - A little break!

After over 3 months inpatient, Ryan got a little bit of a reprieve today!  The doctors said his numbers were good enough for a 'pass'.  Since he has a history of VRE (Vanco resistant enterococcus), he is not allowed to leave his room.  As opposed to other kids, he cannot walk the halls, go to the playroom, or even leave his room without an escort and a gown, etc.  Which makes it really hard to stay cooped up in his room since early December.

But, today, since his counts were up, Patrick was allowed to take him outside the hospital for a date to the movies!  They picked a matinee showing of Black Panther (which he loved, except the kiss at the end... not cool Black Panther.. no kissing).  And even had a quick lunch outside.  They had 4 hours, which was just barely enough.  They arrived back in their room with exactly 4 minutes to spare.

They also arrived back in time to have a great conversation with our oncologist (who came by to see him on her way home from a conference... isn't that sweet?)  She is worried that we've been pushing his liver (and kidneys) too hard.  As a result, she thinks that maybe we should just stop this phase where we are, and move into the maintenance phase.  She commented that the standard 'plan' was tossed out the window months ago, so we are really just making it up as we go along, depending on what Ryan tells us.  At this point in the treatment, his well-being and his health and that of his liver and kidneys and other organs is more important than more intensive chemo.   This was so nice to hear!  As a mom, it's always difficult to weigh the risks of treatment, the side effects of that treatment and the benefit of the treatment.  At this point, we've pushed up against that wall that makes me think, "Ok, we're done... please no more.."  I'm so grateful that his doctor is with me on this.

Now, that doesn't mean we get to go home anytime soon.  We have the fungal infection issue to deal with first.  And, she (the oncologist) isn't totally convinced on the treatment suggested by the infectious disease team.  So, we are going to spend the next few days doing additional tests to make sure we know exactly what we are dealing with, and what the best course of action will be.  Assuming that we get that resolved in the next few days, we should be able to get discharged early next week (always based on if he does anything bad over that time).  Then, we will spend the next month or so, allowing his liver to recover from this latest trauma.

Once we are looking good, and the liver is happy, and we've resolved this fungal infection thing, we can begin our Maintenance phase (probably early to mid April).  We'll stay in Seattle for at least the first 6 weeks, just to make sure that everything looks good.  Then, come June or July, we should be able to get to head back to Montana and transfer his care back to our team at Benefis (yes, I'm looking at you Kally and Sara).  I believe there is an oncologist who works with Seattle, so we will get to meet him or her, and figure out how to plan the next couple of years of our treatment.  It was exciting to have our oncologist actually talking about going home to Montana as something that might actually occur at some point in the near future... 😊

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