The Day

Today arrived and met us with weariness, anxiety, and a long car ride up to Portland that began at 5:20 a.m.  Ari's sedation went well and his MRI quicker than usual (2 1/2 hours, as opposed, to 4-4 1/2 hours).  It would have been quicker if Ari wasn't so wiggly (ha!), as they had to retake a few images toward the end.  We couldn't get into the Ronald McDonald House until later this afternoon, so we chose to find some food and walk around the mall to busy our minds and pass the time.  We weren't very effective!  As we pulled up to the Ronald McDonald House we received a call from the Doernbecher Pediatric Hemotology/Oncology Clinic.  We missed the call! AHHHHH!  After a series of phone tag with our neuro-oncology nurse and oncologist, we finally, and unexpectedly, heard the results of Ari's MRI.

N   E   D

HOLY MOLY!  Our chests were pounding yet there was this huge elephant lifted off of our minds and hearts.  No evidence of disease.  Fluid spaces are stable.  Our oncologist said it all looks really good!  We praise Jesus for this news and for continuing to be with us through this journey.  Thanks for reading our posts, praying for our family, thinking often of our little guy, and sending messages our way.  We love you all!

We are hoping for a good night of rest tonight in preparation for the day's lineup of doctors' appointments tomorrow.

Even though he was tired from his 4 a.m. wake up, he was all smiles before the MRI!

The Weekend Before

I remember growing up and counting down the days to Friday.  Whether it meant no school for 2 days, a big Friday night football matchup under the lights, or watching Steve Urkel storm into the Winslow's with his famous high-waters and suspenders, Friday was something that I looked forward to.  Friday meant the start of something relaxing, something recharging.  This past Friday marked the weekend before.  In less than 48 hours, Ari will be sedated for another full brain and spine MRI per his post-treatment protocol.  The weeks leading up to this weekend have often been spent feeling overcome by our circumstance, analyzing Ari's every fuss or movement.  Believe me, we could really drive ourselves to some unhealthy habits if we didn't have such amazing family and friends to walk along with us.

So, where are we right now?  Sorry for not blogging too much over the past couple of months.  Ari has had a busy couple of months as we work to pursue resources and expertise to give him the best opportunity to recover from treatment.  Since Ari received his G-tube in mid-February, we have been able to steadily increase his stomach feeds and decrease his TPN.  He is currently getting close to 800 mL per day into his stomach.  We are told for his age and size, he should be receiving just over 1,000 mL per day to keep him safely hydrated.  We are so close!  He continues to struggle with vomiting; however, it has continued to decrease nicely.  Recently, he has had days where he has only vomited once or twice!  We are praying things continue to heal and allow him to not throw up every day.  Additionally, Ari has continued to make good physical progress with the help of our amazing home-health PT, Jodi.  He is now independently rolling, pushing up from lying on his stomach to a sitting position, and standing from a seated position with the help of our fingers.  He still is not sitting independently for any length of time but is sitting well with us as we read to him or play catch.  He also has made good progress with his therapy walker.  He is able to move himself around our house independently with the exception of turning corners.

He also has made good cognitive progress.  The kid LOVES to read books.  He probably could sit with us all day and read.  We are very thankful for this.  He is now independently choosing books when given choices, turning pages, and communicating (mainly with gestures) that he wants us to get another book.  He is such a smart boy!  He, also, is really understanding language.  His PT and OT are fairly certain his language understanding is pretty good which will aid in his verbal development.

But, where, actually, are we right now?  Our hearts are anxious and our minds are often overwhelmed with the thought of walking through another MRI with the uncertainty of what, if anything, it might reveal.  We battle with the lack of understanding of why suffering/tragedy occurs.  We are worn thin from lack of sleep, from minds that never stop, and from wrestling with our 25-pound almost-two-year-old who wants to move himself so badly.  But, even amidst all this, Jenny helps to remind us that circumstances aren't indicative of how much God loves us.  We know with all certainty that God, who created and knit Ari together in Jenny's womb, love Ari more than we could ever fathom.  We know God loves us and has not left us throughout this whole journey.

We ask you continue to pray for our hearts to rest and to find a deeper understanding of peace amidst this season.  We also ask that you pray for Ari to continue to make progress.  Above all else, we ask for your prayers in asking for cancer to be far from Ari's body and that we get continued opportunities to work on the recovery phase of his treatment.  Please also pray that we can live lives that make God's name known throughout this journey and not compromise to relying on our own reason or will.

For all of you that ordered shirts for our fundraiser, thank you!  We were able to send a check for $2000 to Cure ATRT Now to help fund continued research for ATRT.  If you had a misprint or order issue, those are being corrected in the next couple of days.  Sorry that it took longer than anticipated!

Now, for what you've really been waiting for...

Ari continues to love his car and has become quite adept at cruising around our little street!

We've enjoyed being able to be back with our church community a little more regularly.

BUBBLES!  Ari has enjoyed walking through them.

This is one of many pictures we have of him reading books with us!