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.

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!