This is Gonna Be a Long One: Radiation Simulation

Since we were first told that Fionn's treatment protocol included radiation, I have dreaded this day.  Initially, I tried to put it out of my mind.  After all, we were so very, very far from it at that point.  There was no reason to even worry just yet.  Carpe diem.  Let's just survive each day.  Yet, as we slowly made our way through each phase, I found myself thinking about the radiation more and more.  Bringing it up every so often with Fionn's doctors. Really?  Definitely?  Are you sure?

The answer was always "yes."  Yes.

But it never sat right with me.  It never felt cut and dried.  And it still doesn't.  Hmm...I should probably back up for a minute.  You see, radiation is only part of the protocol for T-cell leukemia if the patient is either intermediate or high risk.  Fionn is classified as intermediate risk.  So he needs to have it.  Simple, right?

Yeah, but it's not.  See here's the rub.  There is nothing about Fionn's case that makes him intermediate risk.  They have never found leukemia cells in his spinal cord.  He has responded beautifully to treatment.  And his white blood count upon diagnosis was within the normal range.

The issue is this.  The night before Fionn got diagnosed with leukemia, he was given one dose of an oral steroid.  One dose.  Because of that one dose, however, we don't know what Fionn's true baseline was upon diagnosis.  Maybe the steroid made quick work of his blast cells.  Maybe his presentation would have been much more severe upon diagnosis without that dose of steroid.

Maybe. We just don't know.

As a result of not truly knowing, Fionn's doctors want to proceed in the most conservative fashion.  Assume the worst in case the worst was indeed true.  Therefore, he was given an intermediate risk diagnosis.  And in theory I totally jive with this.  I do.

But when you think about something as big as radiation and exposing your child to it...well, it's just hard to round up in terms of treatment intensity.  You know?

Fast forward to this week.  The week of the simulation.  I found myself obsessively googling "radiation in kids with leukemia," and I started rereading all about the long term effects.  Just as it had before, it scared the shit out of me.  The list is long.  It includes everything from heart and lung issues to cognitive issues such as learning disorders and behavioral issues (as if we need more of THAT in our lives -- ha!).  But one stands out from the rest.  Because of Fionn's exposure to radiation (and chemotherapy too), he is more susceptible to getting another cancer diagnosis in the future. 

It tears me apart.  It makes me sick to my stomach.  To think that the very thing that is saving Fionn is also hurting him.  It's just...how does a person reconcile that?

We arrived at the appointment this morning with all of these questions swimming around in our heads.  As we waited for Dr. Kwok to come to the conference room, Conor and I talked about pulling the plug.  Getting a second opinion.  I just couldn't feel good about it.  I wanted to grab Fionn by the arm and run away as fast as we could.

Then Dr. Kwok came into the office.  He has a great bedside manner.  He is small in stature and jovial.  Patient and kind.  He acknowledged that Fionn's case was "controversial" and laid out all of our questions on the table before we even had a chance to do it ourselves.  Yes, Fionn would be low risk if not for the one dose of steroid.  Yes, radiation should be avoided in children unless necessary.  Yes, there were very small long term risks to the radiation Fionn would be receiving.  But Dr. Kwok, who did his thesis on steroids, believes that Fionn's one dose of steroids could have easily had a huge impact on his initial presentation.  He also noted that the prescribed amount of radiation Fionn was scheduled to receive was the smallest amount possible.  The long term effects should be extremely minimal if present at all.  On the other hand, the prognosis if Fionn was to experience any sort of leukemia relapse in his brain would be very poor.  Radiation would make this scenario very, very unlikely.  Leukemia cells in the brain hide from chemotherapy, but radiation is extremely effective in killing them.

Then he said The Thing.  The thing about how he also had a 4-year-old son, and he would do the radiation if his son was in the same situation.

The fog cleared.  It wasn't a happy landscape, but it was a clear one.  Radiation was our path.  It had to be our path.  Forward march.  Forward march.

The appointment itself went really well.  True to form, Fionn walked around like he owned the place during much of the appointment.  It must be said that Dr. Kwok has an amazing team of lady technicians and nurses who fawned over Fionn and basically let him have his way with million-dollar equipment.  That helped.  Fionny loved pushing the buttons and using the lever to make the radiation equipment (I'm sure there is a more technical name) rotate all the way around the room.  They also let him listen to Katy Perry at his request (well, he calls her Carrie Perry).

Fionn and his posse of adoring ladies

The office also has a program where kids can get a wish granted at the end of treatment.  Fionn wasted no time writing down his wishes.  Rescue Bot this, Rescue Bot that.  We are all about the darn Rescue Bots right now if you can't tell.  One of the technicians even said that she would paint Fionn's face mask to look like Heatwave (the fireman Rescue Bot for those not in the know). Here is a pic of Fionn getting his face mask molded to his face.  The face mask (known as a thermoplastic mask) keeps Fionn's head in place during the treatment.

In terms of the wiggles, Fionn did great today.  He stayed relatively still and did not freak out that we were not in the room with him during the scan.  I fully anticipate a freakout at least once or twice during our 8 scheduled treatments, but today was not it.  The office has the ability to strap him down to the bed if needed, but we are really hoping we don't have to go that route.

Fionny thought it was awesome that there was a laser on his face.

I will say that it was abundantly clear that my better half is a very crucial part of our Operation Keep Fionny Calm.  Conor has this ability to make anything into an amazing adventure.  I know I've mentioned this before, so please forgive any redundancy.  I am so grateful that Conor is able to be that fun, creative, adventurous parent for Fionn during anxiety-ridden times like today because God knows I can't seem to muster it.  As a result, Conor is on the hook for attending each of our upcoming 8 radiation treatments.  Sorry, babe.  You shouldn't so damn useful! 

In terms of scheduling, we do not yet know when the treatments will start, but it will be sometime in the next 2 weeks.  We are so grateful that my wonderful Mom has agreed to come and stay with us for a good portion of the treatments to help with Dex in the mornings.  What a help!  Thanks, Mom!!

Speaking of Dex, I will close this novella with a cute picture of our youngest little troublemaker.  I must admit that Deaglan has been marginally more enjoyable lately.  That said, he has decided this week that he doesn't want to wear pants.  Ever.  Also, ice cream is God.  That is all.  Goodnight!