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!

  

Working Through Patience, Today

It's been a bit since we've posted anything.  We're back up at Doernbecher, and Ari is in the midst of day number 6 of 6 of high dose chemotherapy.  We've always had to be careful any time he's receiving chemo with washing our hands when handling any bodily fluids, but one of the drugs he is getting currently seeps out of his pores.  So, we are left giving him multiple baths per day, wearing long-cuffed gloves when touching him, and changing his sheets and clothes several times per day.  It's tiring; however, it's today.  And, we have today.  We are so thankful for that.

I've been struggling recently with how we get to that "magical" day when the fear of relapse and disease progression is less of a worry.  I want it now.  As I've been talking with a good friend recently about his struggles with things in his life, he reminded me of the profound beauty that lies in living in the circumstances and purposefully leaning into what God has for you during that season.  His words over the phone cut me to this point of shamefulness, yet freedom.  How could I be plotting toward something that was never promised?  And, what have I been missing while plotting?  But, more importantly, I don't need to figure that out.  That's freeing.

When I hung up the phone I stood outside Chipotle (thanks Ryan and Kristen for the gift card!), and I contemplated the truth he had just spoken over me unintentionally.  I instantly thought of the royal official in John 4 whose son had been ill in Capernaum.  He had met Jesus in Cana of Galilee where Jesus had miraculously told him to go because his son was now healed.  Cool, right?  But, here's the deal.  Cana and Capernaum were over 20 miles apart.  The royal official's mode of transportation was most certainly not the Autobahn or the high-speed rail.  No, he had to walk.  In case you were wondering, the average human being walks 3.1 miles per hour.  So, he trekked over 7 hours with only the words of Jesus to hang on.  He could have stood there and questioned Jesus's power or ability to do this miracle.  He could have attacked Jesus for making such an outrageous claim.  He could have laughed.  Instead, he chose to walk each step of the 20-plus miles.  He walked and walked believing that the promise was true.

Stay with me here.  This is just how I think (scary, I know).  He walked.  He chose the journey.  I think that's what we're all called to.  I once read this Erwin McManus book entitled, Uprising, back in 2004.  I don't remember much about the book, honestly; however, one thing has always stuck with me.  McManus makes the claim that patience does not imply idleness.  It's so easy and tempting to know or think we know the outcome of any circumstance.  It's tempting to sit idly awaiting that pot of gold at the end of the rainbow.  It's tempting to want to rush through the rainbow only for the gold. We all have circumstances, whether they are perceived to be good, bad, or in the middle.  The mind is so skilled at projecting results, ends, or how things will be.  The harsh reality that I keep being blasted with is that we have today.  Only today.  What we have today is each step of the journey however long that may be.  Walking that journey is part of our story.  Choosing to be engrossed in what is now and not what is at "the end" is life-changing.  It's life-changing for me (and you) and for those I (or you) choose to share it with.

I was driving to Portland on Friday evening after work to be with Jenny and Ari.  On my drive, I had the opportunity to speak to a good friend and mentor who lives in Kentucky.  He had sent me a text message early on during this season.  It was simple.  Be good stewards of what story God has entrusted you with.  Friday night he reminded me of that truth.

God has not promised health and no pain here on Earth; however, He has promised hope for what is to come.  He has promised help.  He has promised to never leave us.  He has also promised trials.  These are some of the promises that sustain us through life, through our journey to Capernaum.  Please hear me.  This is not a concession speech.  We still petition and pray that God will heal our son.  We still pray that he would be disease-free...forever.  We will still fight for Ari and ask for Christ's leading in making each decision.

I share all of this because it is what we continually process and work through.  I don't know that we're "there" with really understanding and grasping the full truth of everything that is being revealed.  However, I know we want to trust in what God's promises are and walk patiently through each day fully experiencing each step.  I know that we, along with everyone reading this scatter-brained blog post, have all been given a story.  Our stories are transforming for us.  They're also transforming for the friends, family, and strangers who hear or experience it in some way.  I've been challenged and encouraged over the past few days to be patient in living through today.  I've been challenged to continue to share our story with all that want to hear or read, because just like my friend who was sharing his story with me over the phone, we, too, have that same opportunity to affect another's life.

Ari has been the most wonderful gift in our lives.  We thank you for wanting to share in our story with us.

Ari will finish with his last dose of high-dose chemotherapy today around 5 p.m.  The next two days will be days of "rest" to allow the chemotherapy to exit his body.  He will receive his stem cells on Friday that were harvested several weeks ago, stored in a freezer, and preserved to help in his recovery.  Then, it's just wait and monitor all his kidney, liver, and blood levels.  Over the next couple of weeks he will get transfusions of blood and platelets, infusions of antibodies and albumin, and medications to help fight off any infections that may arise.  Today, he continues to do fairly well.  His vomiting has increased over the last 12 hours as anticipated, but we rejoice that he is still playful and interactive.  Thanks again for being a part of our story through your messages, prayers, and thoughts.

The staff at Doernbecher are so amazing at giving new toys to Ari.

Slicked back!  This was one of two baths for the day.

This chemo stuff takes it out of our little guy.  Thankfully, he has been resting fairly well for naps and overnight.

Clear with a Catch

Ari's MRI was clear.  We sat anxiously awaiting our oncologist to come review the results with us today.  Prior to her arriving, we met with and talked to nurses and doctors who we were sure knew the results.  They knew it wasn't their place to divulge the results, and we knew it was not appropriate to ask them to reveal anything they knew.  We just let it be the big elephant in the room.  Jenny and I, meanwhile, tried to read into everyone's words and facial expressions.  It wasn't the best idea.  Ha!

So, our oncologist, Dr. Becca, arrived with our nurse practitioner, Chris, to unveil the news.  They patiently waited for our wonderful nurse, Lily, to finish hooking Ari up to his IV infusion to help prevent a specific type of pneumonia.  The elephant grew in the room.  It was almost suffocating.  Dr. Becca sat down on the chair next to us and revealed that the MRI looked great.  We let out a huge sigh.  Then, these words came - "there's a small catch."  Small catch?  No, there shouldn't be a small catch after the MRI news.  She went on to tell us that his cerebrospinal fluid sample revealed 12 tiny abnormal cells floating around.  Usually, the abnormal cells would indicate cancerous cells floating around; however, Dr. Becca went on to inform us that they are not certain this is the case at this point.  The pathologist that ran the tests on the CSF had told Dr. Becca that he did not feel comfortable marking it as "positive" for disease because the abnormal cells could be a result of radiation effects.

Dr. Becca is getting ready to leave tomorrow for a national conference of pediatric oncologists.  She plans to talk with some of the other leading oncologists in the nation to hear if they have any input on treatment planning.  As of right now, the plan is to continue with high dose chemotherapy with stem cell rescue beginning next Thursday.  Jenny will be staying with Ari in the hospital throughout the process.  I will be working a few days each week and coming up to the hospital for the rest of the week.

So, we have great news with a small catch.  But, we have great news!  Tonight we choose to celebrate Ari's MRI being clear.  We choose to celebrate continuing on with treatment.  We choose to celebrate life, today.  We also celebrate you, who are reading this post.  We continue to be encouraged by family and friends throughout this process.  Thank you for your prayers for peace and healing.  Thank you for taking time out of your day to think of our family.  Thank you for all of you who have sent packages, cooked meals, sent text messages, emails, and cards, and thank you for loving Ari even if you haven't met him.

This was yesterday right before his MRI.

The MRI machines were clogged up.  So, we found some time for a picture.

Ari was mostly smiles yesterday!

Turkey, Tree, and Treatment

So, it's been awhile since we've written on here.  There are probably many reasons for the delay in posts, but there is just one that probably speaks to it the most.  We were busy being home.  That's right.  We have enjoyed being at home.  I returned to work.  Oh, I have a job, if you didn't know.  I've been working 32 hours a week.  It's definitely been a transition for us as a family.  I think we've realized that we've been blessed to be able to walk this journey mostly as one unit.  There have been hours and sometimes days where we've had to be apart, but, for the most part, we've been able to journey together.  Now, we wake in the morning, eat breakfast, pack lunch, I venture to work, and Ari and Jenny hold down the fort at home.  It feels odd.  It feels oddly normal.  Everything about the last 8 1/2 months has been abnormal.  It's been stressful.  It's been hard.  The past couple weeks, however, have been nice.  The family time in the evenings and dinner together has been refreshing.  We're grateful for it.

Earlier this week, we decided that we wanted to put up a Christmas tree even though we will more than likely not be here to enjoy it for the season.  So, tonight we put up our robust 5-foot Target special.  Just think Charley Brown Christmas tree on steroids...but not too many steroids.  It's perfect.  We laughed while putting it up.  We took pictures.  We smiled at Ari who has become quite mobile and found himself rolling into gift bags close to the tree.  The whole process was enjoyable.  There wasn't stress.  There was just the moment.  The moment that we all had.  Not the Hallmark moment that gets plastered all over commercials in December.  It was just simply the moment that was guaranteed.  It was a good moment.

Ari thought the roll of wrapping paper was pretty awesome too!

Tomorrow brings Thanksgiving in the Halderman household.  That's right.  Thanksgiving!  We decided to mix it up this year.  We'll be fixing a feast for 12 with only 2 eating.  We're looking forward to some good eats.  We mapped out the menu today and ventured out to gather all the ingredients.  It was a chance for Ari to get out of the house but not out of the car.  Flu season is in full force here in Eugene, so we are playing it safe and not taking Ari into stores.  We traded back and forth at each stop of who went in to get the goods.  It was a good trip.  

Next week is a busy week.  We will head to Portland on Monday night and stay at the Ronald McDonald House.  Ari is scheduled for sedation early Tuesday morning for an MRI, lumbar puncture to check his CSF, and a more in-depth hearing test.  The process should last about 4-5 hours.  After that is done we will try to enjoy some time in the afternoon.  We will return to Doernbecher on Wednesday for another full lineup of appointments which will include learning the results of the MRI.  This would be another reason I have not blogged for awhile.  I'm not really sure how to accurately articulate how I am feeling leading up to the next few days.  We have been told that as long as everything is clear on the MRI, then we will proceed with the next step - high dose chemotherapy with stem cell rescue, a process lasting about 4-6 weeks.  Ari would be hospitalized for the duration of the treatment.  If the MRI is not clear, we are left with clinical trials.  It's odd to pray for high dose chemotherapy, but that is what we have been doing.  

We know many of you have been very consistent in following Ari's journey and praying for our strength and his healing during this season.  We thank you.  We also thank the many of you that have sent packages, cards, or notes to us through email or snail mail.  We continue to cling to God's promises during this time.  We know that this is the story and journey we have been entrusted with for our family.  We are grateful we have not had to walk it alone, and we continue to be humbled by who God is and has been for us.

Back to Eugene

So, we're home.  We enjoyed our time in Portland so much that it felt weird to think about coming back to Eugene.  We talked many times about what that meant.  Mainly, it meant that we'd again be 2 hours away from "our" hospital.  It also meant that the next phase of Ari's treatment had come to an end.  For the latter, we celebrate.  Ari's radiation treatments went well considering his age and history with other treatment modalities.  Our doctors were very pleased at how he progressed while receiving treatment.  We are thankful for that.  Leaving Portland also meant that we would be leaving this amazing retreat-like river house that we had been blessed to stay at while there (thank you Kevin and Marisa).  We will miss our afternoon river walks, our times sitting on the deck watching the geese fly in and the bald eagle swooping down to fish, and we will surely miss just simply being together.  It was a time of respite.  It was a time of growth, physically and spiritually.

This was one of our favorite spots along the river.

So, we're home.  We frantically unpacked our stuff yesterday only to have much of it spread across our living room.  Jenny to the rescue!  My wife is amazing.  She worked tirelessly to get things in their rightful home while I handled the "feather" lifting and Ari duty due to some back issues.  And, what did Ari do during this time, you ask?  He rolled.  And rolled.  And rolled.  Yes, he was rolling all over our living room.  You see, at the river house he spent the majority of the time laying and playing on our bed because the floors were concrete and he still didn't have great control of his head.  So to avoid him hitting his head on the floor we opted to have him play on the bed (supervised, of course).  His play space was definitely limited.  But now he's everywhere.  Just as Jenny and I got everything (or mostly everything) put in its place, we realized the living room was a mess.  The floor was covered in toys.  COVERED IN TOYS!  This wasn't because we had placed them all over the floor for Ari to discover; no, it was because our son was traveling all over the living room playing with his toys.  We smiled and celebrated.  

Ari is now mimicking almost everything we do and say.  He's trying to verbalize more and has started clicking his tongue after we do it.  It's pretty awesome.  He's clapping in response to us saying the word "clap".  He's sitting for longer periods of time in his high chair and while reading books on the floor with us.  And, he's been mimicking singing with the most awesome sing-songy babble I've ever heard.  He's doing really cool "baby" things.  He loves music.  He loves being silly.  He's trying to relearn how to laugh (thank you Ryan and Kristen for the toy).  He's Ari. 

So, now we have a bit of time off.  The next step will consist of words like stem cell harvest, stem cell rescue, and high dose chemotherapy.  Again, words that don't really hold any meaning just as long as they work.  Our oncologist has worked hard at devising the next step.  We are so thankful for her and the rest of the team and all they do for our son.  Ari will go into clinic on the 27th of October for the stem cell harvest.  This shouldn't be a painful or complicated process, rather, one that involves a big machine he'll be hooked up to that will draw his blood out of his central line, send it into a large centrifuge, separate stem cells (baby cells that will turn into all other cells), and return the rest of the blood cells back into his body through his other lumen of his central line.  The stem cells will be frozen and saved for later on in the process.  We have Ari's next MRI scheduled for November 11th.  As long as all is clear, we will continue with the high dose chemotherapy the following week.  We pray and plead for it to be clear.  We ask the same from all of you reading this.  

We find ourselves in the very place we are.  Does that make sense?  I think often we can over think "where we are" in life and how we need to respond.  But the reality is that this is where we are in life.  We aren't sure that all of it will exist, or that we will, in an hour...in a minute.  Fear paralyzes; hope frees.  So, we hope not in what "is", or is not, today but what transcends today into eternity and allow that to free us to experience today.  Our friends say moment by moment.  I agree with that, and it is fitting for almost every situation.

Thank you all for walking this journey with us.  Your continued cards, prayers, gifts, thoughts, visits, and messages are encouraging.  Here are some pictures from the past several weeks.

We will miss the sunrises on the river.

We were blessed with many visitors!  We are glad we got to spend quality time with Jenny's parents out on the deck.  

We had fun with Colby's parents and also enjoyed our time together.

We are blessed with wonderful doctors and nurses.  Today when Chris, our primary Nurse Practitioner, walked in, Ari reached out his arms to him.  Guess that is a good sign he likes him too! :)  

Thanks, Jan, for the cute puppy pillow!  We are so thankful that our nurses are not only very skilled, but incredibly sweet as well. 

This is Ari on his last day of radiation!  We were waiting for the sedation doctor, so Ari got to play with nurse Jan and radiation therapist Andrea.  As you can see, Ari loves both of these gals. 

Ari is getting prepped to receive his last radiation treatment!  

Ari's good buddy Graeme came to visit.  They had fun checking each other out and sharing toys. 

We went out for ice cream with some of our good friends from Doernbecher.  Ari and Ellerie have become good little buddies.  

We had family pictures taken by a wonderful photographer.  Thank you, Brandy from Basically Brandy, for capturing our cute little man on camera.   

Over Halfway

Today marks the last day of September and the last day of a month that has been reserved to bring awareness and funding to childhood cancer research.  I struggled whether to type a post today.  Would it be too cliche or desperate for me to post something with one last petition for people to continue to fight for children with cancer?  Answer: I don't care.  The reality is that childhood cancer is not cliche.  The minimal treatment options are a reality.  The need to increase awareness is not cliche.  The lives that families have to live with a child going through cancer treatments are not cliche.  They are real.  They are real hard.  And this is my unashamed plea for all reading this (and please re-post on facebook, twitter, instagram, myspace - is that still around?, email, or whatever other social media network you're a part of) to keep this topic at the forefront of your minds for the next 11 months while awaiting another September.  I encourage you to re-read our last post laying out some options of how to get involved in helping to fund research and expand treatment options for patients and their families.

Next month is Breast Cancer Awareness Month.  I've known several women who have been diagnosed, treated, and cured of this type of cancer.  Great advances have been made in curing this type of cancer over the last 10-15 years.  During the month, you can see banners, commercials, marketing campaigns, and NFL players wearing pink to support this cause.  I'm grateful there is such a huge backing for women fighting this cancer.  I do hope that in the future September will be as marketed to support childhood cancer patients and their families.  The allocated amount of pediatric cancer research funding is unacceptable.  3.8% of federal funding for cancer research is allotted to childhood cancer research.  This will not change overnight, and we are left with grassroots organizations attempting to close the funding gap.  Thanks for reading the first two paragraphs!

Ari has been doing fairly well.  After today's radiation treatment, Ari will have 10 treatments left.  He has been experiencing some increase in some of the acute side effects.  Although he is still vomiting consistently throughout the day, we've noticed a slight increase.  He's also been fatigued more, leading to some increased irritability.  All that being said, he continues to be playful, interactive, and happy for a good portion of the day.  We met with our radiation oncologist today, and she confirmed that this would be the point within his treatment where we would begin to see some of the increase in side effects.  We are thankful that he has handled everything well up to this point.  Our oncology team continues to work on the plan for chemotherapy after radiation ends.  We do know it will be a bit of a change of direction but are awaiting the full details in the coming weeks.

We continue to be blessed by being in Portland at the river cottage.  It has been relaxing and a great time for our family to enjoy together.  We also have had visits from some family and good friends that has been life-giving.  We are very thankful for this time.  We'll be here for about 2 more weeks before heading back to Eugene.

We continue to ask you to pray for healing for our little guy.  He has been making some crazy cool progress here recently as he has re-learned how to clap, play peek-a-boo, and roll from his back to his tummy.  Ari has been very vocal, exploring by mimicking our sounds and making his own.  It's pretty awesome!  His smile is back, and he's been trying to figure out how to laugh again.  It really has been a great time for Ari's progress.  Praise Jesus!

Here are some pictures from the past couple weeks.

We have really enjoyed sunrises on the Willamette River.

On the river path for one of our walks.

Book time with Momma.  Ari has been loving books here recently!

Mr. Chris lets Ari play with all the equipment that no one else will let him play with...we're OK with that!

Ari loves laying on this bench before going in for his daily radiation treatments.

My Son Has Brain Cancer

Pediatric Cancer Awareness Month
My son has brain cancer. Cancer? Brain cancer?  My son?  If I don't say it, then maybe it won't be real.  For months, I could not bring myself to say the statement, "My son has brain cancer."  People would ask what was wrong with my son, and I would stammer around trying to bring myself to an answer.  Confessing that Ari had brain cancer was something I couldn't bring myself to say.  

I remember going to the grocery by myself one day.  It was one of those days where we had just gotten home from the hospital the night before and we didn't have any groceries.  I was a mess.  My hair wasn't combed, shirt was spotted with vomit, and eyes showed my lack of sleep.  I will often forget to look in a mirror before I walk out the door.  I will get somewhere and realize why so many people are staring.  It is because I am a total mess.  Anyway, on the way to the grocery, I practiced saying the statement aloud, "My son has brain cancer."  I decided that I needed to be able to say it. The month of September is Pediatric Cancer Awareness Month.  In order to help bring awareness to pediatric cancer, I needed to be able to share Ari's journey.  Sharing Ari's story has been better than hiding from it.  Many people have responded kindly which has been helpful.  There are many ways you can show your support for pediatric cancer.  The following are some things you can do:

• Donate to pediatric cancer research 
• http://www.cureatrt.org/
• http://www.pcrf-kids.org/
• onedown.org
• Donate blood 
• Donate platelets
• Become a bone marrow donor
• http://www.bethematch.org
• Use smile.amazon.com instead of amazon.com
• Help bring awareness by running a race

We are so grateful to all the people who have donated blood and platelets.  Ari has received countless transfusions that have helped him in this fight.  Thank you to all the organizations who have supported us.  Thank you to the Kira Foundation for your generous gift bucket for Ari (http://thekirafoundation.org/).  Thank you to all who have helped support us financially, emotionally, and spiritually during this time.  

Ari Update
Today, Ari completed his 12th treatment of radiation therapy.  He has 29 treatments altogether.  Ari's body has tolerated radiation a lot better than he tolerated chemotherapy.  As a result, Ari has shown a great deal of progress over the last couple of weeks.  We have had so much fun spending time as a family, celebrating Ari's growth, and playing with our son.  Over the last couple of weeks, Ari has been trying to clap, attempting to wave, mimicking sounds, initiating peek-a-boo, showing some interest in food, sitting in his high chair, and playing for extended lengths of time.


Pictures and Videos of Ari

One of our good friends took some family pictures for us.  We got a few in before it started to rain.  These were taken a couple of weeks after his second tumor resection.

Ari has enjoyed playing in his high chair.  He especially likes to throw all of his toys to the floor.  We celebrate this developmentally appropriate activity.  We also celebrate that he has shown more interest in food.  Ari is still trying to master the swallowing part of eating.

We have enjoyed the nice weather and lots of walks by the river.  

And, So It Begins...

It has been awhile since we posted mainly due to us temporarily relocating to Portland.  First, I wanted to let you all know that we added a "Subscribe" bar to the right, so that you can be updated by email when we post.  Obviously, there is no pressure, but we know some of you reading this blog do not have a facebook account where we often post updates.  Secondly, we wanted to inform all of you that do your online shopping on Amazon to consider doing all of your future purchases through smile.amazon.com.  This is a charitable website that is owned and operated by Amazon but allows customers to still have access to all the same products on Amazon while selecting an organization to have a percentage of their purchases to go toward.  If you're interested, we'd ask that you select Cure ATRT Now, Inc. as your organization.  Cure ATRT now is grassroots organization raising funds for research and bringing awareness to Ari's diagnosis.  Thanks!

Now for what's been going on in our life...

As you probably have read from our last post, it did not work out to move forward with proton radiation at MD Anderson or Seattle.  So, we began imrt (intensity-modulated radiation therapy) at OHSU (Doernbecher) last Thursday morning.  They have informed us that radiation is a cumulative therapy, so we may not see a ton of side effects until a week or more into the therapy.  Ari has been handling things pretty well.  He is still vomiting several times per day, but, unfortunately, that is about his baseline right now.  Radiation treatments are much quicker than we anticipated.  The thing that actually takes the longest is the sedation portion.  Ari has be to be sedated each day because it would be very harmful if he were to move while the radiation beam was on due to all the sensitive brain structures around the area receiving treatment.  We had the opportunity to meet with Dr. Marquez, our radiation oncologist, on Tuesday, and she reviewed the whole radiation plan.  She showed us images of where they were treating and explained where the highest dose was being placed.  It truly is amazing (and kinda scary) what they can do with technology.  She told us that she was surprisingly pleased with how the plan turned out because she was able to really limit the dose to the brain stem which controls all of our vital functions to live.  Also, she was very pleased with how she was able to avoid other important structures for hearing and sight.  We were relieved somewhat by our conversation with her.

Ari has completely reeled in the hearts of the radiation therapists and nurses!  He's a favorite around the clinic and is always interested in playing with the white coats of the radiation therapists.  He has been babbling a lot recently, and the nurses really enjoy talking back-and-forth with him.  We are thankful for the great care that he is receiving and the love the staff is showing to Ari and our family.  Today marks treatment number 6 of 29.  We continue to be frightened by the list of potential side effects but know that this is the road that we have to walk on.  We feel blessed by all of you journeying with us.

We were able to get settled into the rental we're staying at in Portland.  Some dear friends whom we met at Doernbecher connected us with some of their friends who have a rental.  We are so grateful for this connection as it has provided us with housing and a place to come "home" to and relax.  We'll post some pictures below to give you a glimpse into how things have been going!  Thank you all for your continued prayers, generosity, and thoughts.

The view from our back deck at our "home" for the next 6 weeks!

Ari's Uncle Jake and NOW Aunt Alyssa got married!  We decided to put him in his tuxedo for treatment that day.

Ari continues to get stronger and more coordinated with holding his trunk and neck stable.  We are grateful for continued progress.

Ari always wakes up so happy after being sedated!  The sedation teams tells us that not every child wakes up so pleasant.

To the Land of Ports

We haven't blogged here recently for several reasons.  Probably the biggest reason is that Ari has been off of any type of therapy for over a month now and has been very happy, playful, and interactive.  So, we have been attempting to enjoy him feeling relatively well.  As many of you know, we have been in a little uncertainty with the next steps for his treatment.  Earlier this week, we received a "preliminary" notification from our NP up at Doernbecher that our insurance company was "more than likely" going to cover proton radiation therapy at MD Anderson.  So, we halfway began to mentally prepare to go to Texas for 6-8 weeks pretty soon; however, there was still a lingering feeling of uncertainty and indecisiveness with direction.  So, we didn't act too hurriedly toward that direction.  So, we waited two more days until we called back up to Doernbecher.  Still, no clear direction.  Finally, on Thursday we go word that in the conversations between insurance and MD Anderson, a price for what the insurance company was willing to pay and what the hospital was willing to accept could not be agreed upon.  MD Anderson was removed from the equation.  There was this odd feeling of relief when we heard.  I think partly it was due to not having to arrange to be that far away from home for that long of a period of time.  I think, also, it was a relief that we wouldn't be far from the oncology team and neurosurgeon that know Ari and his case well.  There still seemed to be a feeling of uncertainty though because there still wasn't a clear direction.  What we knew was that Seattle Proton Therapy Center was now an option.  Another day went by and it was determined that Seattle could not start Ari's radiation for almost 3 weeks from yesterday.  That long of a delay in the beginning of treatment made our oncology team nervous because of how aggressive Ari's cancer is known to be.  The recommendation was for Ari to receive IMRT (intensity modulated radiation therapy) at Doernbecher (OHSU) beginning late next week.  We had a decision.  We finally had a direction.  How do we feel about this decision?  This is the very question that we've been asking ourselves.  You see, we don't have the knowledge or experience to weigh our options between protons and photons.  We don't have the capacity to skillfully wade through the treatment options and choose the "best" one for Ari.  So, we take the recommendation of our oncologist whom we trust and feel is always making decisions based on what is best for Ari.

We're anxious.  Our hearts grown.  Radiation is never a medical treatment that a parent WANTS to choose for their child; however, it is what is necessary in trying to fight this disease.  So, we wait with squinted, hesitant hearts like a person who is getting ready to rip off a week-old band-aid.  We don't know what to expect.  We've been given the list of "potential" side effects, some of which may not be seen for years to come.  We've been given a vague idea of what treatment will look like each day for the next 6 weeks - daily sedation, radiation beams will be on for approximately 5-10 minutes, and we should be out of the office within an hour and a half.

So, where does this leave us in this journey?  As we opened our mail yesterday, it reminded us to continue to sit in gratitude during this season.  We continue to be blasted by generosity.  We are not really sure how to receive the gifts that we are continually given.  We just want to continue to communicate how thankful our family is of the cards, letters, checks, donations, gifts, text messages, phone calls, and emails that we get on a regular basis.  We feel blessed to have been afforded a unique glimpse into what community truly is.

Jenny and I have made a decision to relocate, temporarily, to Portland while Ari is undergoing radiation therapy.  We don't feel it is fair to Ari to make him spend 4 hours in the car each day commuting back-and-forth from Eugene to Portland.  We are exploring many housing options, and we thank all of you that have been willing to make contacts on our behalf to help in this process.

Ari continues to be interactive and playful.  He has been smiling more and mimicking sounds and movements.  We are so grateful for continued developmental progress.  We ask all of you to pray for more progress and for radiation side effects to be minimized in his brain.

Ari loved his head wrap.  Leave it to him to even make that look cute!

She's back!  Ari's oncologist just returned from maternity leave.  He was excited to snuggle with her.

Nahm nahm nahm...those fingers are so tasty.

Holding himself up like a big boy.

A Successful Surgery

On Thursday, August 14, Ari had his sixth brain surgery.  Ari spent about 9 1/2 hours in the OR.  The first half of the surgery was spent fixing a fluid collection on the left side of his brain.  The second half of the surgery was spent removing four small tumors.  We are so thankful God has blessed us with such a wonderful surgeon.  Dr. Baird successfully removed all four tumors!  

Ari arrived in the PICU a little after 2 a.m.  Seeing him come in from surgery was extremely emotional.  He was swollen, had tubes everywhere, was connected to his breathing tube, and had several battle wounds from the surgery and equipment used.  They worked on him until about 4 a.m. and then took him down for another MRI around 4:30.  Moving Ari from his crib to the MRI machine while being connected to so many things took many people and was difficult to watch.  He arrived back for the night around 5:30 a.m.

We received wonderful news that Dr. Baird was able to remove all of the tumors on their first attempt.  Initially, she thought it might take two surgeries to remove all of the tumors.  She also said he might have difficulty with his eyes and eye movements again.  We were all very pleasantly surprised to see that his eyes are working beautifully and the tumors are gone! Praise Jesus!

We were also cleared to start proton radiation therapy in two weeks which is much quicker than we had anticipated.  This means we have quite a lot to do.  We are still waiting to see what insurance will cover.  We also need to get on the schedule with MD Anderson.  Then we will work on flights, housing, transportation, and all that good stuff.

Something that this experience has really taught us is to enjoy each day no matter the trials.  Over and over we meditate on, "This is the day the Lord has made; We will rejoice and be glad in it." This Psalm is so simple and so true.  Each day is a gift the Lord gives us and we want to have joy and praise Him for the day and the time we have with our son.

We cannot thank you all enough for the overwhelming love and support you have shown our family.  Thank you for taking the time to pray with with us, to rejoice, to cry, and to share.  Colby and I would not be able to make it through this season without your support, and we praise Jesus for blessing us with such an amazing community.  New friends and old, thank you.


Picture Time

Ari is snuggling with his amazing neurosurgeon Dr. Baird.  Thank you Jesus for this woman! 

Ari sure loves his books. 

We were thankful we got to have one of our all-time favorite nurses the night before his surgery.  

Family Photo before Surgery

We rarely let Ari play with his tubes so he was in "tube heaven!"

We were the last ones left in the waiting room.  Long night. 

Ari did amazing with his surgery.  We were all impressed with his recovery.  This is the day after surgery.  

The Night Before

Today was good.  We went for several walks outside and around the oncology unit.  We played and interacted with other patients and their families that we've gotten to know.  We watched Netflix and the Cubs game while Ari was napping.  We've babbled back and forth with Ari.  We've changed Ari's dressing for his central line.  We've given him his first sage bath in preparation for surgery.  And, we've sat many times anxious for what tomorrow means.  Ari is scheduled to go into surgery at 12:10 p.m. to remove the newly visible nodules and drain the fluid from the left side of his brain.  We are frightened beyond what we can sensibly comprehend.  Our frame of reference for this type of surgery comes from his surgery that took place on February 27th of this year to remove the original tumor.  That was the day that our son began his journey to regain all that had been lost neurologically.  That was the day we began this journey to battle this awful beast that is represented by four letters, AT/RT.  That was also the day we learned of the strength our son possesses. Our little guy has been through status epilepticus, multiple brain surgeries, eating difficulties, and intractable vomiting from chemotherapy.  Yet, tonight, he babbles "momma" and "dada" while rolling from side to side and mimicking his squeaky giraffe toy.  He smiles.  He crinkles up his nose as we tickle his belly and squeals.  It is so good.

Honestly, I fear losing those things.  I feel we have our son back.  I feel like he fully recognizes Jenny and I as mom and dad again, and I want that to stay.  My fear can be crippling sometimes, and I'm not exactly sure how to deal with it in times like these.  My mind keeps jumping back to the verse in Philippians that I've posted here before, instructing us to be anxious for nothing but in every situation, by prayer and petition, to submit our requests to God.  I want so badly for that verse to answer this fear directly.  I want it to somehow wash away everything that I feel.  But, honestly, I think I truly want it to take away all that is happening to our son.  As I was meaninglessly perusing YouTube today listening to music videos, I stumbled upon a song from John Mark McMillan's latest album.  Here are the first couple of lines to the song.

You hold the reins on the sun and the moon

Like horses driven by kings

You cover the mountains, the valleys below

With breadth of your mighty wings

I just kept replaying this part.  And, I cried.  I sat there in front of my computer with tears.  It wasn't because this is a sad song, but that was it.  The same God that the passage in Philippians was instructing to submit our requests to is the same God that holds the reins on the sun and moon.  Wait, what?  He's that big.  He's that powerful.  He cares for us that much.  I wanted comfort to come in the form of understanding and knowledge, but comfort came in the form of a re-realization that God is mighty and cares for us.  He cares for Ari.  Quite frankly, more than I do (which I don't really understand).  He knit Ari together in Jenny's womb and breathed life into his lungs.  

I'm comforted by this truth tonight.  Does that completely wipe away my anxiety or the thoughts of my son going in for a 6-hour brain surgery tomorrow?  Simply put, no.  But, I know that this is the door we must walk through tomorrow at 12:10.  Luckily, we continue to be accompanied by a God that loves our son, and us, more than what our minds and hearts can comprehend.  We invite you to continue to journey with us through this season.  Your continued thoughts and prayers for our family are felt and much appreciated.  We will try to post updates when Ari gets out of surgery.  We love you all.

Waiting

As many of you may know already from our recent facebook post, we are still waiting for Ari's surgery to remove the nodules and take care of the excess fluid.  Our neurosurgeon was not able to get a time in the OR until today at 9 p.m., and she didn't feel comfortable doing a 6-hour surgery at 9 p.m.  We agreed with that!  So, we continue to wait here at Doernbecher.  The plan is for the surgery to take place on Thursday morning.  Ari remains pretty happy overall and has been pretty interactive.  We do notice that the pressure in his head has been bothering him a bit more, but he continues to be bright and active when he's awake.  We are going to try to get away from the hospital for a few hours today on a day pass.  The doctors and nurses have been great about being flexible to allow us to take multiple walks outside each day, and they've offered day passes for us to go out and about.  It has been a nice change of pace from the hospital life.  

Thank you all for the thoughts and prayers you have been sending.  We got the word last night that Ari's CSF (cerebrospinal fluid) came back negative!  This is a big first step for the treatment ahead.  It basically means that the cancer has not metastasized and is localized to where the nodules are located.  Not only is this good for the overall progression of the disease, but it makes him a better candidate for the focal radiation that hopefully will happen after his surgery.  Please celebrate with us for this first step.

As we find out more information, we will do our best to add a new blog post or send facebook updates.  After Ari's surgery on Thursday, we will be going to PICU for several days for recovery.  Just a heads up, we are not allowed to have our cell phones on while in there.  So, if you are texting or calling us after Thursday, there may be a delay in our response.  We continue to be grateful for all your journeying with us through this season.  We have had time to reflect on the past 6 months these past several days, and we continue to be baffled at the support and love we have been shown.  Thank you!

Here are a couple videos for you.  Enjoy!

Ari has really enjoyed giving us high-fives here recently.

Ari has begun to mimic not only us but his squeaky toys as well!

Unfortunate News

As the title of this blog post indicates, we did not get the news we had been hoping for leading up to the MRI.  The imaging revealed 3-4 "nodules" popping up within Ari's original tumor bed.  The rest of this brain and spine looked to be cancer-free.  That is a good thing.  They will be running tests on his cerebrospinal fluid over the next couple of days to test for any cancerous cells floating around.  So, where does this leave us?  Twenty-four hours ago, I would have told you that we did not have any further options with this type of cancer.  We were mourning the loss of so much progress and lack of cancer.  We were trying to wrap our minds around this fact that they again think he has cancerous masses in his brain.  We had to revisit that same day when we met with Dr. Romanoski (our wonderful pediatrician) in the PACU after his initial MRI at Riverbend Hospital when she informed us that he had a brain tumor.  Now, some things are different.  The "nodules" are very small, about 3-4 mm in diameter (his original tumor was more than 3 cm in diameter).  This is good.  The "nodules" are in the same tumor bed as the previous, which means that our amazing neurosurgeon believes she can get to them and get them out.  At this point, it appears that the recurrence is localized to the original tumor area.  This is good for many reasons.  The obvious one is that it appears the cancer has not spread.  Secondly, it is good for further treatment options.

This leads me to my next piece of information.  The chemotherapy was doing a decent job of keeping the cancer away, but didn't quite get the job done.  As I've stated before, radiation is almost always a part of treatment protocols for Ari's type of cancer; however, it was omitted for him due to how young he was at diagnosis.  Although he is still young, they feel it is the next step in the treatment of this cancer.  We  had the chance to meet with the radiation oncologist this morning about treatment options.  We knew going into the meeting that there were really two main options, proton-beam and photon radiation.  What that actually means, I do not know!  What we do know is that proton-beam radiation, in theory, is supposed to minimize effects on surrounding healthy tissue within Ari's brain.  Now, I say "in theory" because it is still a fairly recent discovery for cancer treatment.  Photon radiation would be more considered the "traditional" form of radiation.  So, our meeting with Dr. Marquez went well, and she recommended that we do proton-beam radiation therapy to help minimize adverse side effects.  The one problem is that the proton center they suggested is in Houston, TX.  The second problem is that we found out Ari's insurance does not cover out of state medical expenses unless deemed medically necessary.  Now, you and I know that this is medically necessary, but an insurance company will need some convincing.  Our team of doctors will be writing letters to advocate on his behalf for the treatment to be covered.  After that treatment, we will more than likely return to Oregon to continue chemotherapy.

So, you now have all the information.  We decided to wait until now to inform everyone reading the blog because we were still gathering information from the oncology team about treatment options.  To say that we are not saddened by this circumstance would be a lie, but we know that God continues to carry us through this season.  We still lean heavily on the verse in Philippians that states, "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God."  So, we petition and we pray for healing.  We say thank You, God, for continuing to grant us strength and grace through this process.  We say thank You for bringing smiles to our son's face and helping him to continue to heal and be more interactive.  We say thank You for this team of physicians and nurses who are willing to sing "The Wheels on the Bus" for 10 minutes with our son to help him calm during procedures.  We thank You for a neurosurgeon who found out about our imaging ON HER VACATION and requested to review the images to develop a plan for our son.  We thank You for community.  We thank You for a church that continues to pray and be connected to us through this season.  We thank You for family that consistently asks what they can be doing from afar to help ease the burden.  We thank You for friends who stay at our apartment all day while we're in the hospital just to receive Ari's shot coming through UPS, and then decide to do our laundry while they wait.  We thank You for You and for offering us hope that is eternal and not founded on tangible or circumstantial details.  Please petition with us. Here are the things we ask:

1.  That we would continue to be fully reliant on God and He is leading us in making decisions for Ari.

2.  That Ari's CSF would be clear of any cancerous cells.

3.  That Ari's neurosurgeon would be able to remove the nodules safely.

4.  That Ari would heal from surgery with no complications or seizures.

5.  That Ari's insurance company would understand the necessity to approve a treatment that minimizes any long-term effects on his neurocognitive development.

6.  That Ari would learn new developmental skills amidst treatment and surgery.

7.  That Ari would be healed from this awful disease.

Now for some fun pictures!

Ari was happy and playful while waiting for his MRI.

Colby is administering meds in the car between our many appointments.  

What do you do when a baby has appointments all day at the hospital?  You squeeze in a quick nap in the car in the parking lot.

We went to a party at the hospital today! 

We are thankful for this family.  

Ari loves music! 

Ari is snuggling with his oncologist and hanging with his nurse practitioner after his Omayya tap.