6 More Weeks of In-Patient

Auntie Liz is in town and it's delightful to have another adult to love on the kids.  Truthfully I think she's having a pretty good time with it too.  Being in patient at rehab doesn't mean you can't have visitors who read you stories and have fun.

 The other day Jonah came back from Lurie to find that someone had put a mask on his dog, Chase.  Being in patient at rehab doesn't mean you're above joking around.

Dan came to visit the other day and Jonah and he swapped iPads.  Being in patient at rehab doesn't mean you don't get to play on electronics doing "guy" stuff.

Cousin Anne came to visit and smell Jonah's stinky feet.  Being in patient at rehab doesn't mean you stop being a little boy who's into gross things.

Today we met with our oncology team to review Jonah's post stem cell MRI & LP and make a plan forward.  The team was very happy with the MRI & LP results and feel that there is significant improvement from the very beginning.  However, because of the extent of initial disease this summer, we have decided to move forward with radiation for Jonah next month.  We will be giving Jonah a lower dose of radiation than originally planned however, as a result of how well he has responded to his 6 rounds of chemo.  In the perfect dream world, the MRI would be 100% beyond a shadow of a doubt so perfectly clean and clear that we didn't have to do radiation, but a reduced dose because of good treatment results is a real world second.

Punxsutawney Phil is not always the most welcome of predictors, as he often predicts more winter.  Even when he has the good sense to not see his shadow, indicating spring, we look at him sideways, because how can a groundhog predict the weather?  I digress, but the reason I mention Phil, is because although we received favorable test results and reduced dosing, the team recommended that we continue Jonah's in patient stay at rehab during radiation.

The whole radiation experience is meant to be 5 days a week for 6 weeks.  During those 6 weeks, each day at the proton radiation center (to be referred to either as the proton center or Procure moving forward), which is about an hour from our house, Jonah will spend at least 3-4 hours being put to sleep, positioned & prepped, radiated and then recover from anesthesia.  A common radiation side effect is fatigue.  Because they have Jonah's best interest at heart, the team speculates that the travel and radiation on top of 3 hours of back-to-back out patient rehab therapy 3 days a week will be too much for him.  Being in patient during radiation would mean changing rehab hospitals to Marion Joy, which is just a few miles from the proton center, but would allow for greater flexibility with therapy scheduling.

This extra in patient stint was a bit more unexpected than anything they had to say about the radiation itself, but unfortunately there is much logic to it - and so we prepare for 6 more weeks of in patient rehab, just like we prepare for 6 more weeks of winter when Phil sees his shadow.  Just like we know though, that winter will end, we know that our time in patient will end too, so we're going to figuratively bundle up our coats, make a little hot chocolate and build a snowman.