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.