The Lion Fights: 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.