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.