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.