Over Halfway

Today marks the last day of September and the last day of a month that has been reserved to bring awareness and funding to childhood cancer research.  I struggled whether to type a post today.  Would it be too cliche or desperate for me to post something with one last petition for people to continue to fight for children with cancer?  Answer: I don't care.  The reality is that childhood cancer is not cliche.  The minimal treatment options are a reality.  The need to increase awareness is not cliche.  The lives that families have to live with a child going through cancer treatments are not cliche.  They are real.  They are real hard.  And this is my unashamed plea for all reading this (and please re-post on facebook, twitter, instagram, myspace - is that still around?, email, or whatever other social media network you're a part of) to keep this topic at the forefront of your minds for the next 11 months while awaiting another September.  I encourage you to re-read our last post laying out some options of how to get involved in helping to fund research and expand treatment options for patients and their families.

Next month is Breast Cancer Awareness Month.  I've known several women who have been diagnosed, treated, and cured of this type of cancer.  Great advances have been made in curing this type of cancer over the last 10-15 years.  During the month, you can see banners, commercials, marketing campaigns, and NFL players wearing pink to support this cause.  I'm grateful there is such a huge backing for women fighting this cancer.  I do hope that in the future September will be as marketed to support childhood cancer patients and their families.  The allocated amount of pediatric cancer research funding is unacceptable.  3.8% of federal funding for cancer research is allotted to childhood cancer research.  This will not change overnight, and we are left with grassroots organizations attempting to close the funding gap.  Thanks for reading the first two paragraphs!

Ari has been doing fairly well.  After today's radiation treatment, Ari will have 10 treatments left.  He has been experiencing some increase in some of the acute side effects.  Although he is still vomiting consistently throughout the day, we've noticed a slight increase.  He's also been fatigued more, leading to some increased irritability.  All that being said, he continues to be playful, interactive, and happy for a good portion of the day.  We met with our radiation oncologist today, and she confirmed that this would be the point within his treatment where we would begin to see some of the increase in side effects.  We are thankful that he has handled everything well up to this point.  Our oncology team continues to work on the plan for chemotherapy after radiation ends.  We do know it will be a bit of a change of direction but are awaiting the full details in the coming weeks.

We continue to be blessed by being in Portland at the river cottage.  It has been relaxing and a great time for our family to enjoy together.  We also have had visits from some family and good friends that has been life-giving.  We are very thankful for this time.  We'll be here for about 2 more weeks before heading back to Eugene.

We continue to ask you to pray for healing for our little guy.  He has been making some crazy cool progress here recently as he has re-learned how to clap, play peek-a-boo, and roll from his back to his tummy.  Ari has been very vocal, exploring by mimicking our sounds and making his own.  It's pretty awesome!  His smile is back, and he's been trying to figure out how to laugh again.  It really has been a great time for Ari's progress.  Praise Jesus!

Here are some pictures from the past couple weeks.

We have really enjoyed sunrises on the Willamette River.

On the river path for one of our walks.

Book time with Momma.  Ari has been loving books here recently!

Mr. Chris lets Ari play with all the equipment that no one else will let him play with...we're OK with that!

Ari loves laying on this bench before going in for his daily radiation treatments.

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.