Scanxiety - A trash full of take-out containers and a fridge full of cake

Let's see if I remember how to do this blogging thing.  It's been awhile since we last wrote, and it seems a lot has happened since we last sat down at this site.  Here it goes...

Our day-to-day lives continue to be busy (who's isn't who has two kids?).  We continue to take Ari to his various therapy appointments (PT/OT/speech/audiology/ophthalmology/feeding) throughout the week.  It is interesting to see how Ari grows.  After we had moved away from our apartment, we saw a huge physical progression for Ari.  He was exploring more in our new space and using his gait-trainer more.  It was very cool.  Then, he started to shift more to cognitive/interactive progress.  He has become more aware of his surroundings, is more appropriately and consistently engaging with play, and is using his voice more and more each day.  We are thankful for both areas of progress!  He also continues to see his feeding specialist, Erica.  We are so grateful for a clinician who takes pride in what she does and invests in his care.  She continues to work with Ari to explore food in hopes he will eat in the future.  She truly loves Ari, and he has responded very positively to her presence!

A couple of weeks ago, we took Ari to an ophthalmology appointment in Portland to have his eyes re-assessed for any improvement wit his right eye turning inward.  They informed us that there had been no progress or regression.  Then, they recommended that we consider having the alignment of his eyes surgically repaired in the near future so that his brain receives the proper signals from his eyes.  Although we do not like the thought of rushing him into another surgery, we are beginning to see his eye troubles affect his ability to focus on objects, especially when he is moving.  We are hopeful this next step will help to coordinate his eye movements and allow him to utilize his eyes in a non-confusing way for his brain.  The surgery is scheduled for May 12th at this point. We will also need to eye patch for 2-6 hours a day.  No problem, right?

If I'm honest, I'm sitting here trying to give an update, but it seems difficult with the looming thought his next MRI this Tuesday.  I suppose that's the real reason I sat down to blog tonight.  We've been experiencing a large dose of "scanxiety" over the past couple of weeks as it nears.  We've been analyzing and over-analyzing all of Ari's movements and interactions only to arrive at the same point we almost always do.  He's really doing quite well, but there's not really any way for us know if something is going on inside his head.  I suppose that's why they schedule these scans and appointments.  We continue to be encouraged by how far our little guy has come, and we continue to be hopeful that his little body will never have to deal with cancer ever again.

So, Tuesday morning at 8:00 a.m. we'll release our little man into the care of the wonderful pediatric sedation team to usher him into the imaging tube that more resembles a space ship (and sounds like one, too).  We'll sit next to the natural food store at OHSU and try to busy our minds with our smiley, wonderful 7-month-old son, Everett.  When called, we'll anxiously greet Ari when he comes back from the MRI, and then we'll wait.  More than likely we'll wait until the next day for the results to be given to us.  Just as past scans have revealed, we are praying for no evidence of disease.  We are praying for fluid spaces to be smaller and normalized, and we are praying for there to be continued signs of healing and restoration.  We would love it for you to join with us in praying.

Thank you for continuing to follow Ari's story.

A Father's Ramblings

It is these types of days that make this journey hard.  Not the type of hard where you yearn for sympathy or empathy.  Not the type of hard that you can maybe shake by getting out of the house (we've tried).  It's the type of hard that often makes it hard to even breathe or able to think clearly and positively past today.

As parents of a pediatric brain tumor survivor recently off of therapy, we are given the responsibility of watching for specific symptoms, side effects, and warning signs.  When you think you might see something out of the ordinary, it consumes your thoughts, your eyes every time you look at your son, and your heart every time you think about how far he has come since that initial tumor resection in February of 2014.  Today seems to be one of those days.

This post-treatment life we live is incredibly paradoxical.  You want to be diligent but not over-reactive.  You want to be therapeutically challenging but not too pushy.  You want to be present but often find your mind wandering to the future or the "what ifs."  There's such a fine line between the paradox, and when you tip-toe across the line, the snowball grows quickly and rolls uncontrollably down a slope of worry and fear.

Ari is doing very well.  He is walking without any pelvic support in his gait trainer.  He is progressing cognitively and is learning to initiate and engage in play.  He is using his voice loudly and often.  He is sleeping more regularly.  He is smiling and dancing to music.  He is jealous of his little brother.  He is exploring our new living space.  He is showing objection and opinion to choices presented to him.  He's really quite amazing.  We love him so much.  That's where the fear originates from - we love him.  In a way, we are very thankful for the journey we have been sent on.  We've been transformed by this journey.  We've more accurately experienced trials.  We've more deeply experienced sadness.  And, we've smiled bigger, cried louder, hugged tighter, and celebrated through triumph.  In another way, we are deeply, deeply saddened by the thought of our son, and so many other children, being diagnosed with cancer every day.

Last Saturday night, we were encouraged and humbled by the work of our friends, family, and people we've never met.  Our wonderful friends, Nathan and Cecilia Woods, saw a vision come to fruition.  They have been tirelessly working to organize, choreograph, and give life to a dance concert to raise money for AT/RT research.  It was so amazing.  Dancers from the Eugene/Springfield area and the Pacific Northwest came together to put on a showcase that was done artfully, meticulously, and with great purpose.  Ticket sales, silent auction sales, shirt sales, and personal donations all went toward funding research for AT/RT.  Over $5,300 was raised.  Nathan and Cecilia, thank you for being wonderful friends and for caring for Ari and our family so well.  Everyone who helped, donated, and attended, thank you for being a part of the journey toward new, more effective, and less toxic treatment options for children battling AT/RT.

In the presence of the weighty days, we continue to be encouraged by generosity and love from you all.  Thanks for continuing to journey with us.