Eyes and Ears and Nose and Mouth

It's been quite awhile since we last blogged.  We often spoke of wanting to write but also find it difficult to carve out the time to do so during busy days/weeks.  I suppose today will be the day the drought ends.

The past month and a half have been very busy.  After receiving good news on Ari's last MRI, it was full speed ahead working on further recovery.  Ari continues to have physical therapy and occupational therapy on a regular basis helping him to regain strength, balance, and developmental milestones.  He is making good progress overall.  He has been walking more in his gait trainer outside, and really loves when we let him walk (or should I say gallop) downhill.  He gets a big smile on his face and all but refuses to walk back up the hill afterward.  He is really enjoying moving.  He's also been standing more at our ottoman and couch.  This is a big step as he is more willing to stand with minimal support and play with a toy.  Prior to the last couple of weeks, it was just too much to put together for his body.  We definitely celebrate continued progress.  His strength also continues to progress.  He is now pushing himself up to a seated position from many different directions.  He's demonstrating much more skill with sitting with no support for longer periods of time and is "falling" with much  more skill and grace.  He is really doing some good stuff!  He's also been scooting...kinda!  He has discovered that while laying on his back, he can use his feet to scoot backward.  He has become quite skilled at it and is learning how to move himself.  We're thankful for that!  And, of course he's still rolling everywhere.

Thankfully, Ari's vomiting continues to decrease.  There are actually days now when he hasn't thrown up!  If you've been following his story from the start, you know this is a HUGE step!  Additionally, he has transitioned completely off of TPN and is now only receiving stomach feeds through his G-tube!  Again, this is a big deal.  In the coming weeks, we will begin to introduce some pureed foods in his G-tube to try to get his body used to more solid foods.  With him being off of TPN, he no longer requires weekly labs for the first time in over a year!  We celebrate this!

About a week and half ago, we drove to Portland to have Ari's eyes checked.  This was his second eye appointment due to some slight crossing of his eyes, another lasting side effect of surgeries and treatment.  The doctor has instructed us to begin patching his left eye to give him more opportunities to begin using his right eye more.  We're nervous for this new change because Ari really was not a fan of them patching his eye for 1 minute in the clinic.  We've been instructed to do this for 2 hours per day.  Yikes!  If the patching does not prove to be successful at helping to correct his right eye movement, they may have to complete a surgery on the small muscles in his right eye this coming fall.

This past Friday, we met with a local audiologist who gave us Ari's new hearing aids.  Again, we are nervous to begin attempting to use them during the day because Ari does not like things in his ears; HOWEVER, we are so thankful to be working on the recovery phase.  And, he actually did not seem to mind them in his ears in the clinic but really hated the process of getting them in.  This should help Ari hear high-frequency language sounds such as the s, f, and th sounds.  As he's able to hear them more and more, he will be able to develop the verbal skills to speak them.

If you've been paying attention to the national allergy counts, you may have noticed one particular city who has been holding the #1 spot for allergies...Eugene, OR.  Apparently, 200 is a high allergy count.  Lucky us, Eugene has had several days that were well over 700.  We've noticed the effect mostly on our little man.  Ari's nose has been running more often, his eyes will get red and puffy, and he has been more congested.  We're praying allergy counts will go down soon.

Our little guy is also vocalizing more on a consistent basis.  We feel he continues to understand language well and is still working to learn how to form words and verbalize them.  He continues to LOVE to read books!  He is also using his mouth more as he brings more and more toys up to it and is chewing on them.  After many, many months of not wanting anything near his mouth, we're thankful for this progress!

On a day-to-day basis, our minutes and hours are filled with intentionally working with Ari to help with physical and cognitive development, helping him to keep his feeds in his stomach, and working on all the previous things mentioned in this post.  It's tiring, but we are thankful for the fatigue.  The fear that can often creep in is often work to fend off.  We want to continue to be real with the circumstance, but also want to not be paralyzed to a point of missing out on the enjoyment of what is today.

We had the honor of speaking at church a couple of weeks ago on our 6-year anniversary about our journey over the last year and half.  Our church has been journeying through Luke 6:46-49 where Jesus speaks about the parable of building our foundation on the rock, as opposed to, the ground with no foundation.  Jesus reminds us that when the storm comes, which it WILL, our house will still stand throughout trials if built on the foundation.  It gave us a great opportunity to look through pictures, reflect about all the events, feelings, and decisions, and to re-experience what God has done in our hearts and lives through this storm-filled journey.  It was hard, life-giving, and gave us reason to celebrate.  If you're interested at all in listening to part or all of it, you can visit http://www.awakeningeugene.org/sermons and click on the June 7th sermon.  Our pastor and friend, Clint McKinnis, gives about a 20-minute sermon prior to us beginning to speak (we start speaking around the 21-minute mark).  If you have the time, I would highly recommend listening to the entire sermon!

As always, we want to extend our gratitude toward all of you that continue to express interest in Ari's story and continue to walk with us through prayer, words of encouragement, and sending love our way.  We will never quite know how to express our thankfulness with such a limited amount of words in the English language.  We have felt more love and care during this season than we really can comprehend.  Thank you!

Ari taking over the streets in his gait trainer.

This might be one of our favorite pictures.  He could probably look at books all day long!

Oh, and by the way, our little man celebrated his 2nd birthday AT HOME this year!

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!

Surgery, Stress, and Shirts

Tomorrow morning at 8 a.m. a team of doctors and nurses will take him back to the O.R. here in Eugene for another surgery.  I say another because this will be his eighth one of his young life so far.  They will be putting in a G-tube that inserts through his abdominal wall and directly into his stomach.  This will help us transition back to using his stomach for nutrition.  We are nervous for the surgery even though they have told us it should be fairly quick.  We're a bit stressed to be out of the "comfort zone" that is Doernbecher where we know many of the doctors and nurses by first name; however, we are really thankful for a great surgeon who is doing the surgery tomorrow for Ari.  Luckily for us, it is the same surgeon who placed his central line last March.  So, tonight was full of running around packing a hospital bag, doing a last-minute dressing change for his central line, and giving him a really good bath in preparation for surgery.  Tomorrow, we'll wake, pack it all up, and head to the hospital here in Eugene.

We've been doing our best at trying to find a new normal these days.  It's not always easy, and there's not much "normal" about our days.  But, we are so thankful for these days and for Ari continuing to make progress.  The next couple of months will consist of a surgery (tomorrow), a slow transition to using his stomach, intensive feeding therapy for Ari to re-learn how to eat, physical therapy (both in clinic and at home), occupational therapy, trying to get his vomiting under control, and a neuro-opththalmology appointment to assess if his slightly uneven eyes need to be corrected.  All these appointments and therapies are a direct result of the nasty side effects of chemotherapy that just seemed to reek havoc on his little body.

Please continue to pray for our little man and for God to restore his body from all the treatment side effects.  Please also pray for the surgery to go well tomorrow and for us to be able to come home fairly soon after.  Please pray specifically for Ari to re-learn how to eat and for his stomach to work again to process and digest food.  Please pray that Ari learns how to sit, crawl, stand, and walk.  Thank you for walking alongside us up to this point!

Lastly, we wanted to let you all know about a little research fundraiser we are involved in.  The past year has been very rough for our little man, but he continues to teach us more about strength and joy everyday. Because of the rarity of his type of cancer, there is not a lot of funding that gets invested into research to find better treatment options. We’d like to raise money and awareness for research through the profits from selling T-shirts that were specifically designed for Ari. All profits will be donated to an organization, Cure ATRT Now, working closely with some of the leading AT/RT research centers in the U.S. You can visit their website at www.cureatrt.org. Ordering will only be open for a set amount of time, so please make sure to get your order in on time. Also, please feel free to share the link to the website on social media to spread the word! Thanks!


About the artist who designed the shirts.:One of our close friends, Bryan Putnam, designed the T-shirt artwork from a scattered idea we had given him. He continues to blow people away with his intricate work and epic storytelling through art. He has a passion to make really good art while allowing people to consider creation. Bryan was there the days after Ari was born in the hospital holding him in the rocking chair, and Bryan was there sitting with us while Ari was going through his first tumor resection on February 27, 2014. Before you order your shirt please go to www.iamrainier.com and check out some of his work. If you’d like to contact him directly you can email him at bryanp@uoregon.edu.

To order shirts, you can visit www.myshirtsize.com/lion .  Thanks for the support and help in funding more research!

C E L E B R A T I O N (s)

N E D

These three letters represent the phrase our oncologist uttered to us over the phone last evening.

"NO EVIDENCE of DISEASE"

In other words, Ari's MRI yesterday morning looked "beautiful" according to Dr. Becca!  We originally were supposed to find out the results next Wednesday when we travel to clinic to meet with the whole team; however, Dr. Becca didn't want for us to have to wait (yeah, she's amazing).  So, we celebrate!  We cry.  We smile.  We are thankful for such good doctors and nurses.  We are thankful for God who continues to teach us how to be good stewards of the story we've been given.  And, we are thankful for you.

We are still awaiting the results of his CSF that should be completed on Monday, but it is a good sign that his MRI is clear.

Our friends in Chicago who we've spoken of many times call it moment by moment grace.  We are simply thankful for this moment because that is all we have, all we can truly experience.  We work to not project into the unknown for fear it would remove us from this moment, or any moment, for that matter.  So, we sit here in Portland at the Ronald McDonald House overlooking downtown, and we try to rest in this moment.  We are thankful God granted us peace during the MRI process and being away from Ari for so long, so much longer than usual.  We are thankful for Ari and how God knit
him together.  We are thankful he continues to be strong in the midst of persistent vomiting and
frustration with an inability to physically accomplish what he desires but what his body won't yet
allow.

Almost time to go back

Ari licking Momma's shoulder right before sedation.

Still a little groggy, but he always wakes up so happy from sedation.  Nurse Jan was so nice to have him snuggled up with some warm blankets!

While we're at it, why don't we just celebrate something else...

No, that's not a food baby.  Surprise to all of us, we have a new peanut joining our family in July!

We are definitely excited that our family is growing.  Obviously, there are fears that come along with it, but we, again, are trying to live into this moment and no other ones in the future.  We're not always successful at it, though!

Thanks for joining with us in our C E L E B R A T I O N (s)!

While We Wait

 It has been an interesting season of waiting.  While we wait for the next MRI, we have been trying to find a new "normal" for our family.  Ari's counts continue to recover.  We are down to once a week office visits for transfusions.  It is nice to only make the long trip once a week now.  While at home, we spend a lot of time playing and working on physical therapy.  Ari is still stuck at home for the most part while his body continues to recover.  Protecting him from germs is still a big priority for us. We definitely try to get out for walks when it is nice.  We are grateful for those sunny days.

Ari continues to regain strength lost while being sick in the hospital for a month.  He has been sitting up with us more and really loves to read books.  Unfortunately, sitting up still makes him throw up often.  Although his vomiting has decreased overall, he continues to battle with it.  We've noticed he is much more nauseous being on TPN.  Some of his best hours are the 9 hours he is not hooked up during the day.  We're thankful for those hours.  He has also become quite adept at rolling all over the floor, flirting with every blunt corner or furniture piece he can get to.  It keeps us on our toes!

As we sat around as a family the other day, I (Colby) was kissing Ari's cheek when, to my surprise, he giggled.  He giggled!  He hasn't giggled since before that February 25th night when Dr. Romanoski told us we were being directly admitted to Riverbend Hospital for an MRI the next day.  So, what do you think I did?  I kept kissing his cheek to hear him giggle more, of course.  Enjoy!

We celebrate all of these things.  We also yearn for further restoration and healing for our little man.  We pray, specifically, that Ari will regain the strength and coordination to sit on his own, to crawl, and to eventually walk and run around.  We pray he regains the ability to use his stomach for nutrition and for his ability to re-learn how to eat and drink.  We pray he and all his fellow fighters are healed of their diseases.  We pray that through Ari's story, people will become more aware of children being diagnosed with cancer everyday.  We also pray that through Ari's story, all will be affected on a soul level, driving them deeper into wonder and hope.  We pray all of these things today, on the first day of his MRI week, but, we don't reserve these prayers just for times like these.  We pray these things daily as we wait for each next step.

For now, we continue to discover what our new "normal" is for our family.  Our days may be filled with central line flushes and TPN, but we celebrate that there is more time spent playing with toys and enjoying one another at home.  We will try to be better about updating all of you following Ari's story.  Thanks, as always, for continuing to walk with us.  

We've had some awesome weather here recently.  So, it's meant more outside time!

The kid just loves his tongue!

Playing with Momma's hair.

We are thankful for friends who take a day to go with Jenny up to Portland to help relieve some burden of a long day.

  

The Past Month and Forward

First, we apologize for not updating sooner.  A lot has happened since we last blogged, and I'll attempt to keep it fairly succinct.

Ari received high does chemotherapy (as blogged earlier), a stem cell transplant following the chemo, and many, many days of antibiotics, pain medications, and platelet and blood transfusions.  The team of doctors monitored his kidney and liver function all along and gave him help with some drugs to shed excess fluid he was retaining.  Our little guy did amazing.  His counts recovered a little quicker than the time frame they had originally told us, and we were able to be home the week before Christmas.  Since then, we've been managing his pain, making multiple visits up to clinic per week for blood and platelet transfusions, and attempting to get Ari back on some semblance of a sleep schedule.  The latter seems to be the most challenging at this point.  We've been trading off getting up early and sleeping in.

Currently, we're making 2 trips up to Portland to the oncology clinic each week so they can give Ari transfusions as needed.  They are hopeful this will decrease to once per week in the very near future.  Ari seems to be a little more himself.  He's playful, loving books, and rolling all over the place.  He's also communicating much more; he's learned the art of fussing!  This can be difficult as a parent in this situation as we try to wade through his desire to be picked up or if he's feeling any real discomfort.  He keeps us on our toes!

Christmas for us was refreshing to be home and not in the hospital.  We had decided early on that week that we wanted to fix some really good food throughout the day.  So, we woke up and fixed a breakfast that probably could have lasted us the rest of the day.  Instead, we skipped lunch and fixed a massive dinner consisting of steak, brussel sprouts, homemade rolls, and corn casserole.  I think we may have woken up full the next morning!  We were thankful to get to Skype with our families over Christmas Eve and Christmas Day to see and enjoy being with them.  We laughed, opened gifts, and made funny faces in the camera.  It was overall a really good couple of days.  Ari enjoyed opening gifts; although, he tired quickly but seems to really enjoy his new couple of toys.

Luckily, I have another long weekend for the New Year's holiday this coming week.  It will be nice to have another extended time together as a family.  After the new year greets us, we will have a 4 week wait for Ari's next MRI.  Unfortunately, it is scheduled for a January 30th, which is a Friday, and we are not scheduled to be in clinic until the following Wednesday to learn the results.  I'm sure that will be a "fun" wait.  We continue to be hopeful and prayerful that Ari will be cancer-free.  The task for us right now is trying to return to some normalcy in our daily lives.  I recall reading a blog post from some of our good friends who are battling the same cancer with their little guy.  I read the post early on in our journey as we were connected with them through our wonderful oncologist.  I would like to share, briefly, what they wrote.  Here are two excerpts.

"We've been stagnated under the immediate and the urgent for so long.  Now, we have this chance to move...to be in forward motion, if you will, away from the treatment and the upheaval and to be out from under all of that."

"We have been wanderers in the treatment phase for so long - I've written a few times about the urgency that barely allows you to make eye contact with life, and now, we've been granted the great gift of reprieve.  It's terrifying to stop fighting and live, but it's amazing to stop fighting and live.  We've been given the gift of life - now we actively seek God for our place in it and the courage to assume what He has for us when He makes it clear."

Firstly, Bob and Ellie (the writers of these two excerpts), are probably some of the wisest and most steadfast people in their pursuit toward a relationship with God during seasons of tribulation.  They have been wonderful to us through this journey.  Secondly, this is precisely how we are feeling.  Our oncologist told us that many families experience more anxiety with treatment coming to an end compared to it starting.  I think we feel the weight of that right now.  I think we also feel the weight of how fear can paralyze and stunt experiencing life, each other.  So, we cautiously, in a way, move forward and live, seeking God's provision and guidance.  We know it will be a process to transition back into our "new normal."  We pray we will have the courage to live in faith and boldness and not be controlled by fear or uncertainty.  We, also, continue to invite you all to journey with us.  

Ari getting his stem cell transplant.

Santa came early to the hospital, so Ari got to meet and sit on his lap.  

Rocking the hat.

Ari's new favorite game: take out all of the toys in the tub and scatter them all over the floor.  It's awesome!