History, Truth, and Thankfulness

HISTORY
One year ago toady, we left Doernbecher Children's Hospital after Ari's high dose chemotherapy and stem cell rescue. We left with scary but safe counts.  We left and were thankful to be home for Christmas.  We left knowing we would have trips back twice a week for blood product transfusions. We left knowing this was his last treatment option apart from trials.  But we left, we hoped, and we celebrated life together. We started the long journey of restoration that was and is so desperately needed from such an ugly disease and the life-saving poison his body received.

Ari was playing in the bouncer before heading home for Christmas. We were very excited to get home to Daddy! 

TRUTH
The truth is things are still really hard a year later.  Every system was wrecked in Ari's little body.  Every week we have therapy and doctor appointments to help restore each system in his body.  We give him eye drops in his good eye so he can't see out of it for a couple days.  His eye is then dilated and sensitive all week. The goal of this is to help his weak eye straighten and carry its share of the "seeing" load. We are still working with molds and fitting of hearing aids.  We are trying to determine why he throws up every time hearing aids are put in his ear.  We see an ENT in January about this.  We are trying to heal his esophagus and control his crazy reflux. We are trying to increase daytime g-tube feeds.  We are trying to motivate Ari to play with food. We are not even to the eating part yet.  We just want him to explore food.  We are trying to teach Ari to play with toys. Ari is working on safely sitting in a chair without straps.  Ari is still working on walking.  He uses a walker currently, and we are trying to remove his seat saddle so he has less support.  It has been hard in a small apartment because he doesn't have much room to maneuver. He is getting orthotics for his feet. Ari is working on body awareness and control so he won't have so many falls.  We are working on speaking or communicating through sign language.  We are working on social interaction with others.  We are trying to help Ari learn to sleep through the night on his own. Overall, he is doing better with sleep but still requires medicine in the evenings.  

Trying to balance all of this, his many weekly appointments, and making time for Ari to just be a kid has proven to be quite challenging! Let's call it like it is, cancer sucks.  It has made ordinary things very difficult.  It has stolen the lives of many of our loved ones. And the fear of it returning to our sweet son is more than we can bare many days. The truth is we cannot bare this alone which brings me to my next point - Thankfulness.

THANKFULNESS
I am thankful I don't have to do this on my own.  I am thankful I have a God who wants to take on my burdens and give me rest. I am thankful I have a God who covers me with his Grace and perfect strength. Through God, my weakness is made strong and I don't need to fear.  I know that God loves Ari and has plans for him. I know that to be true no matter what our future holds.  I know that each day is a gift from God.  So even though things are still difficult, I am thankful for each day I am blessed to be Ari's mother.  I am so proud watching him work to overcome the many obstacles he already faces.  He is a 2 1/2 year old who knows how to work, how to persist, and how to achieve! I believe this will take him places in his life.

I would like to just share a few pieces of progress that I am so thankful for getting to experience with Ari.  I am just going to start listing.

• Hugs and Kisses - Ari wants to give us hugs and kisses!
• Communication - Ari is starting to initiate communication.  Whether he is grabbing our hand and showing us what he wants or chasing us around the house with a book he wants to read, he is communicating! 
• Babble - The beautiful sounds of babble are finally a regular part of Ari's day.  Praise Jesus for that sweet voice! 
• Excitement - Ari is showing excitement and joy when he is having fun.  He loves to dance, be tickled, listen to songs & books, and play peek-a-boo. 
• Movement - Ari is getting stronger and requiring less support with his walking devices.  He loves to cruise around stores and the house to explore his environment. It used to be too much for him. He is crawling up the stairs and all over the house.  He is showing interest in climbing.
• Functional Things - Ari is beginning to consistently help in taking his shirt and pants off and will mimic the inflection in our voice when we "shirt on" or "pants off." 

We are grateful for each day with our son. We pray and believe that his little body will be fully restored.  We are grateful for each therapist and doctor working on Ari's behalf to help with the healing process.  We are thankful for an incredible neurosurgeon who we can never repay for safely removing such difficult tumors.  We are thankful for an oncology team that loved and cared for Ari for over a year while he battled AT/RT. Friends and family, thank you for supporting us and being a part of this journey.  We appreciate that we never felt like we were doing it alone.  We always felt like we had the love of others backing us up.

Thank you for listening to my ramblings and reflections.  Now to the good stuff - Pictures! :)

Ari Enjoying the Pumpkin Patch

Have we mentioned that this kid loves books?

Thanks to our good friend C.J. for taking some family pictures for us!

Ari was so excited the song "Day-O" came on the radio.  He was squealing with delight! 

Good to See Smiles during Play

Loves Bubbles

First Haircut by SuperDad

Smiles at Home for Christmas :) 

Another Eve

This time last year, we were preparing to take Ari to Portland for an MRI to check to see if radiation had been successful at keeping the cancer away from his body.  It's been almost exactly one year from when we received the first of a string of good results from MRIs.  Tomorrow, we will pack our sons up in the car along with their books, toys, blankets, diapers, and changes of clothes, and we'll make the all-too-familiar trip to Portland for yet another trip into the magnetic imaging tube.  Our hearts are heavy with the weight of the unknown, but we cling to the joy that we continue to experience as we see Ari heal and recover from such a rough road of treatment, surgeries, and complications.

Ari has had a busy couple of months since his last string of tests.  He continues to receive physical therapy, occupational therapy, speech therapy, feeding therapy, and audiology assistance in his recovery.  Those appointments, coupled with Everett's infant needs and tummy troubles, keep us busy throughout the week.  Ari is now cruising around furniture quite skillfully and has just discovered how to round the corners of furniture without having to sit down on the ground.  He is crawling all over our home and has become pretty skilled at managing tight spaces.  As a result of his work with our wonderful PT, he is now beginning to crawl up our stairway, as well.  He needs help with some of the sequencing of the movement, but he is becoming stronger and more able as the days/weeks progress.  He continues to walk in his gait trainer, and we are now taking him to larger spaces to walk more (mainly Target and Colby's physical therapy clinic).  We are so thankful for his progress!

We continue to work with his eating as well; however, we know it could be a very slow process.  We're thankful for the expertise of our newly-found feeding specialist!  He is tolerating his stomach feeds through his G-tube as we try to move away from overnight continuous feeds and more boluses throughout the day.

We would appreciate your thoughts and prayers as Ari goes in for his routine 3-month MRI tomorrow at 11:30 a.m. PST.  We are hopeful for clear results and stable fluid spaces.  We would ask you to pray specifically for those things.  We also ask that you would join us in praying for full recovery and restoration of Ari's function, both cognitively and physically.  We may find out results via phone tomorrow afternoon/evening, but since his MRI is later in the morning they may not have time to call us.  We will try to update people as we know more.  Thanks, as always, for caring for our family and loving our Ari from close and far away.

Ari reading books with mama.

Our good friend, CJ, was kind enough to take some family pictures for us a few weeks ago!

Out and Forward

Thanks for all of your thoughts, kind messages, and prayers during the past week.  Ari did really well during and after his surgery.  He ended up having the surgery Tuesday morning around 7:30 a.m., and we were able to see him in recovery right around 11:00.  He was relatively alert right from that point on.  This hospitalization was a bit more of a juggling match with a newborn added to the mix.  We went with the "divide and conquer" approach, and it seemed to work as well as it could have.

Dr. Baird was able to remove the solidified fluid on the right side of his brain and said his brain rebounded nicely upon cleaning out the space.  While in surgery she removed his shunt (holy moly!) and said that it wasn't doing anything at this point.  She also was able to safely remove his Ommaya reservoir which the oncology team had used to deliver chemotherapy into.  It's strange to think about the fact that this is the first time in almost a year and a half that Ari doesn't have some form of medical equipment or devices in or around his brain.  We're so thankful for that!  She did, however, have to leave a temporary drain inserted into the right subdural space following surgery.  Her directions were to monitor the drainage while keeping him flat for at least 24 hours.  Sure, no problem.  Keeping a 2-year-old who just started learning to crawl should be no problem!  Up to this point, when Ari had a surgery he was not mobile.  So, we celebrated having to keep him still and busy.  They did put arm immobilizers on him called "no no's" (http://www.medi-kid.com/index.php?p=product&id=3).  These were mainly so that he wouldn't pull the temporary drain out.  He was a champ!  Overall, he was pretty drowsy and recovering from surgery.

The next day after much deliberation, Dr. Baird felt comfortable sending us home.  She told us that his quick-brain MRI (that was conveniently completed at 2:30 a.m.) looked GREAT!  Now, the work really began.  We were to help him protect his head...rrrright!  Ari is on the go all the time now!  He's crawling everywhere, he's sitting up on a regular basis, and he's pulling himself up to the ottoman and couch.  The truth is that he bumps his head from time to time.  But, the doctor's orders were to protect, so, protect is what we will do...for 2-3 weeks!  So far, we've done a pretty good job.  Ari just continues to progress developmentally at a pretty rapid rate.  We're so thankful for the progress!

On September 16th Ari will one more piece of medical equipment removed from his body.  He will return to the same surgeon who placed his central line in March of 2014 to have it removed!  Luckily, it will not require a surgery to take out, just an office visit.  Again, we are thankful for each new step forward.  In the mean time, we continue to adapt to being a family of 4 and having two boys with two different personalities.  We are thankful for where we are in this journey!

Lastly, our good friend, Cecilia Woods, is organizing and producing a dance concert to take place at the beginning of 2016 here in Springfield, OR.  The concert will benefit research for AT/RT and money earned will go to an organization called Cure AT/RT Now.  She has created a Go Fund Me page to attempt to raise money beforehand to cover the cost of the venue and travel for the dance groups, so that, all funds raised during the concert can 100% go toward research.  Also, if you were unable to purchase a "lion" shirt previously, we will be printing more for the event!  If you are able and feel compelled, please visit the website (http://www.gofundme.com/themovementproject) and donate.  Thanks!

Here are couple of pictures from the week.

This was Ari in the surgery waiting room prior to being called back.  He was all smiles!

Joylyn, our wonderful neurosurgery Nurse Practitioner and Meghan, our nurse who took great care of Ari after surgery, are standing by ready to remove the drain his in head.

Joylyn removing the drain and stitching up his skin.

This was that drain allowing the excess fluid to drain following surgery.  

No. 9

Well, it's been awhile since we've written.  As you may be able to imagine, we have been pretty busy with all of Ari's therapy and adapting to life with a newborn as well.  Oh, by the way, we had another baby if you hadn't heard!  He's great, but he's always keeping us on our toes and making sure we know when he needs something!  He's got a great set of lungs on him.

Ari has continued to make great progress.  He is now crawling!  Now, let me qualify that exclamation.  When he is motivated to get to something (mainly his mother!), he very skillfully can get into a crawling position and get to where he needs/wants to go.  We're seeing it more and more each day and are excited at the fact he can more readily move himself about.  He's also been pulling himself up at the couch, ottoman, and crib, daily!  All of these things are huge progress toward developing the trunk stability and coordination needed to increase his mobility.  He also has been more willing to taste food we sneakily place on his lips/tongue.  This is a huge step because he previously would gag and vomit every time we'd give him a taste of food.  We praise Jesus for this progress.  For a while now we have not been able to see how it's going to be possible to re-teach him to eat and "like" flavors.  Our prayer is just that it is a natural progression and growth over time.  Meanwhile, he is tolerating his G-tube feeds wonderfully!  We're beginning to introduce purees in addition to the toddler formula.  So far, he is tolerating carrots and a spinach, lentil, and brown rice combo (yummmm)!  Progress, progress, progress!

Our last blog post indicated his MRI was clear of any evidence of cancer.  We continue to celebrate this news!  We also had written that there was some excess fluid on the right, outer side of his brain.  Unfortunately, this fluid space has somewhat solidified due to some minor bleeding over time.  This means that the shunt is no longer able to drain it like it had previously been doing.  So, our neurosurgeon has recommended surgery to clean the space out.  The surgery is scheduled for this coming Tuesday, September 1st at 7:30 a.m. up at Doernbecher and will be his 9th surgery in his short 2 years of life.  Dr. Baird has assured us that this is "minor" in comparison to previous surgeries; however, the reality is that it still requires access to our son's brain. Anxiety has been building as the day nears.  One positive of the surgery is that since Dr. Baird will be accessing Ari's brain, she is going to remove part of the shunt system that is no longer needed on the left side of his brain and the Ommaya reservoir used previously to deliver chemotherapy.  We are thankful to have some of the medical equipment removed from his body.  Another celebration is that we are scheduled to get his Hickman central line removed on September 16th!  Again, we are so grateful for progress and healing!

Thanks for all of your prayers, messages, thoughts, letters, and generosity.  This weird, turbulent season would not have been bearable or navigable without your support, love, and prayers.  We have been changed because of you.  Thank you!

Ari has enjoyed wrestling more with blankets, pillows, and cushions...and, of course, his parents!

What do you do while waiting for an audiology appointment at 8 a.m., you ask?  Oh, you walk around the lobby and hallway, of course!

Hello, Dad!  My little brother is crying!

Who needs a nap?  Not Ari.

N.E.D.

Today, we celebrate that Ari's scans this morning showed NO EVIDENCE OF DISEASE!  Please celebrate this news with us!  Thanks for all of your prayers, messages, thoughts, and involvement in  our life!

The scan did reveal some fluid space growth on the right side of the outside of his brain that was stable last MRI.  They may need to do surgery at some point to drain the fluid, but we won't know any more toward that until we meet with our neurosurgeon, Dr. Baird, tomorrow.

We will update more when we know more!

Ari smiling and playing with Mama right before going into the MRI this morning!

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.