While We Wait

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

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

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

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

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

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

The kid just loves his tongue!

Playing with Momma's hair.

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

  

The Past Month and Forward

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

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

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

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

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

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

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

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

Ari getting his stem cell transplant.

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

Rocking the hat.

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

  

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.