Silver Linings

Dex with his godparents, Lewis and Corrie

When a diagnosis like cancer comes into your child's life, everything stops. Life as you knew it is over.  You are suddenly thrust into a new world that is both maddeningly complex and yet very, very simple all at the same time.

You can probably imagine the things that make it complex. There are countless details to work out. Taking time off of work, finding childcare for your baby who can't enter the ICU hospital room, making sure your cat gets fed.  And on and on and on. 

Luckily, we have been blessed with the most amazing support network a family could ever, ever want.  We have been quite literally scooped up by love and carried across the last few days.  People are just...taking care of things for us.  Loving us.  Wrapping their arms around us literally and figuratively.  It has been so incredible.  There has literally been a fight over who gets to take care of Deaglan.  A clamor to bring us food and anything else we might need or want.  One of my friends, Anne Zalubowski, just mowed my lawn.  This would be amazing in itself, but she also happens to be 7 months pregnant and had Deaglan strapped to her chest in the Ergo at the time.  Katie Renshaw and Robert Van Glahn also brought us chocolate chip pancakes early Saturday morning after we told them that Fionny requested them.  (It's our Saturday morning tradition).  These are just 2 examples.  I could go on and on and on.

Note the "F" for Fionny

Balloons from Victoria Ansong and her boys, Gabe and Jason.

In the same way that cancer has made our lives more complex, it has also simplified things so much.  Or maybe clarified is a better word.   There isn't room for anything extraneous right now.  Cancer makes you cut the fat.  All the stupid things I worried about prior to last Wednesday -- agonizing over where Fionn will attend school, what after-school programs to enroll him in, whether I'll ever lose all that leftover baby weight -- gone.  There isn't room for that crap.  We have an extremely narrow focus right now.  Get our boy well.  Keep our  boy well.  The rest just falls away.

There are also so many things that have been put on permanent hold as we attempt to navigate our new reality.  Play dates.  Birthday parties.  After-school activities.  Summer camp.  The pool.  Work. 

We assumed Deaglan's baptism would be one of those things at first.  After all, it was scheduled for this morning.  Yeah.  Not exactly the best timing.

I got all ready to write the email, notifying the church, when all of a sudden we had another thought.  What if the baptism could happen here at the hospital?  After all, it was a rare weekend when Conor's mom and both of Dex's godparents would be in DC.  We took a chance and threw the idea out there.  Our wonderful rector, Justi, eagerly agreed to make it happen for us.

So last night, amid the blinking lights of Fionn's monitors and the constant beeping from his IV drips, we baptized our youngest son, Deaglan Stetson.

It was beautiful and poignant and unforgettable.  And, at times, hilarious.  After all, how many baptisms have you attended where the "holy water" was Evian with Lemon, and the Big Brother of the baptized baby had to pee in a bedpan in the middle of the service?  Classic Fionn.

He also ate spaghetti during the service.

In terms of Fionny, I know you are all wondering how he is doing.  In short, he is doing great.  His electrolyte levels have remained stable in the 48 hours since they took him off the dialysis machine.  As a result, the docs felt confident enough to remove the dialysis catheter from his leg earlier this afternoon.  Obviously, we can put it back in if we need to do so in the future, but they seem to feel that we are out of the woods in terms of kidney issues.

We had some concern over Fionn's blood pressure because it was trending high for the past 2 days since coming off of the dialysis machine.  But then, suddenly, this morning, it was fine.  Go figure! 

Today, Fionn received his Day 4 Chemotherapy meds.  This particular drug, Asparaginase, has a nasty reputation for causing allergic reactions in kids.  Everything from rashes to hives to difficulty breathing.  So it's probably good that we remained in the ICU while we could monitor Fionn's response to it.  So far, no reaction.  Fingers crossed that continues overnight.

The best news of the day is this.  We are moving to Oncology tomorrow.  Hooray!  Strange as it sounds, Oncology has become the Promised Land to us.  More freedom in terms of visitors so Fionny can have buddies come and play.  More freedom in terms of movement too (Fionny can "wagon" around the floor with his IV pole).  We are also looking forward to the programming they offer for kids and parents alike.  Playrooms, art classes, support groups.  We can't wait to go to Oncology!  (Things I never thought I'd say for 1000, Alex).

So far, we are hanging in there.  Please keep your prayers and good thoughts coming.  We are soaking them up like a sponge.

Fionny got out of bed for the first time today!