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.

MRI Eve

As Jenny posted on facebook just a few short moments ago, we celebrate the end of induction this week.  Induction marked the most intense portion of Ari's chemo protocol, and also serves as a good indicator for how well the chemotherapy is "inducing" a remission of the cancer.  We celebrate that our son continues to make developmental progress in the midst of feeling awful all the time.  We celebrate a pediatrician who exhibited amazing intuition and clinical reasoning skills to directly admit us to Riverbend Hospital on February 25th on suspicion that something was going on in Ari's brain.  We celebrate a neurosurgeon who is one of the most kind, skillful surgeons we have ever met.  We celebrate community surrounding us and making us feel loved and cared for during this stressful, lonely season.  We celebrate a God who has remained faithful in providing peace, transformation, and a closeness during this season.  And, we celebrate our son.  He's is the toughest 13-month old that I have ever met.

I start with the celebration mainly for myself.  I have to be intentional and disciplined to celebrate these things on the eve of the MRI.  Our friends in Chicago call this feeling "scanxiety" (thanks Ewoldts).  I think that is appropriately termed!  You see, tomorrow marks the end-of-induction-evaluation.  That evaluation comes in the form of a complete set of images of Ari's brain and spine to make sure the chemotherapy is keeping the cancer away.  And, quite frankly, it scares the crap out of me.  My being is in complete turmoil.  My mind does not turn off.  When I wake at 3:30 a.m. to give Ari his IV benadryl, I think of what is drawing near.  When we take an evening walk, we think and talk of what is drawing near.  It is everywhere.  But, it is imperative.  It is that thumbs up that we can continue as scheduled, and Ari can continue to heal.  So, we pray for that and hope for that.  And, we ask for you to do the same.  Two friends, who are men that I look up to, separately posted a verse from 1 Peter this week that has stuck in my mind.

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.

Our suffering will not last forever.  When it ceases, we will be restored and made stronger than before.  But, we don't wait stagnantly waiting for that day; no, we share our story as we journey through it.  And, since Ari cannot talk yet, we share his story as he suffers through this battle with cancer.  Another great friend of mine who lives in Kentucky reminded me that Ari's testimony is NOW, not just when the treatment is over and he is cancer-free.  So, we rejoice in all the things from the first paragraph, and we petition and plead to God for healing and restoration.  Until that point of full restoration, we actively share Ari's story for the sake of Christ and the effect that it can have on others' lives. 

Ari's MRI will begin at 11:00 a.m. tomorrow morning and will last about two and a half hours.  We should know the results by late afternoon or early evening.  Yes, we have anxiety, and, yes, the uncertainty rips our hearts apart every minute we think of it; however, we hope in a God that is eternal and is the God of all grace.  We hope in a God that is writing Ari's story for us to share.  As always, thank you all for continuing to pray for our family and offer gracious gifts in this season.