One full day of almost normal

Prior to discharge, bone marrow transplant kids and parents have to go through a couple of hours of training.  The training largely focuses on the dos and don'ts of leaving the hospital.  For example going to see a movie with lots of people is a "don't" - so is eating berries.  Always wear your mask.  The blue one that makes breathing like sucking an ostrich egg through a garden hose. Don't go barefoot.  Avoid any crowds. If your friend that goes to public school visits, they need to shower and change clothes before they come to see you.  Lots of rules.

And then there are the medicines. Part of the training before you get to go "home"  is administering the medication to Jacob.  There are over 15 different meds of all sorts. He basically gets a 'meal' of meds for breakfast and dinner with and an IV snack in the middle.  The job seems pretty easy while doing it under the watchful eyes of the nurse.  But I learned  this past Monday it's just not.  Throw into the mix that Jacob's entire digestive track is still recovering from the hammering it got in the last chemo round - and it will be for months.

The Drugs

We started the regimen in the morning. Jacob has to battle to keep those meds down.  Sometimes he wins that battle and sometimes he looses and then he has to take them again.  How he endures this with only a glib comment like "my stomach is angry with me" is beyond me.  I watched this young man do this, just me and him for the first time and then it hit me again how hard this is on him.  Watching this in a quasi-normal setting without the noise of the hospital brought the intensity of this battle home to me.  This is not easy, there is no button to keep your stomach from getting "angry" it's just going to.  Every day for breakfast, lunch and dinner he perseveres.

Despite all of this Jacob liked being discharged to a "normal" place this past Monday. Dad cooked his favorite meal 'adobo' for dinner - three helpings!  He promptly set up shop and began yet another lego kit.  He enjoyed standing in the sun Tuesday morning on the balcony of this apartment at Brent's Place.  Smiling as he worked on legos, grimacing as he struggled to keep the meds down.  Laughing when Dad told him something funny. We had a hard, but good day on Tuesday. Then we get a call:  "Marshall when you bring Jacob in for labs tomorrow morning, bring his stuff."  What? "A virus that we all have woke up in him - he'll need to be on antiviral medication round the clock  until his numbers come back up."

One full day of almost normal.  Jacob is back in the hospital hanging out with his brother as I write this.  He will probably be there for another two weeks.  It's normal for these BMT kids to go in and out but I don't think its ever easy for them.

I want to always write the truth here.  Right now we are still learning how to  "Consider it pure joy, my brothers, whenever you face trials of many kinds" as James encourages.  What I have learned is that takes reflection - looking at small increments of where we have been so far and seeing changes in our outlook on things and realizing that we are different.  Different in a good way - maybe deeper, maybe "more" somehow through all of this but we still don't see it all.  I do know we will get it someday.

Weirdly Thankful

Marshall