A Month of Hope

10:01:00 AM Atticus Army 4 Comments

Hey Army.

Thanks to much for following and supporting our family.  As many of you know September is Childhood cancer awareness month.  Seattle children's media team approached us and asked if we would share our thoughts on what this month means to our family. 

This, of course, was a great honor for us to be chosen among 1000's of families that Seattle Children's works with.  As we talked about in our last post We are Home!?!?   it has been a very interesting journey being away from the hospital and navigating our way to a new normal.  We felt the chance for us to reflect on this last year and sum it up in a few paragraphs was very helpful to see how far we have come.  

If you feel overwhelmed or downtrodden, take a minute and pick a time a few months back and chronical how much has been accomplished.  Gratitude is definitely the "Attitude" to have, and wow.... what a difference it makes.  

In any case, below is the article that was posted, if you want to see the pages you can check it out on Seattle Children's facebook page, or their "on the pulse" blog (Gwilliam's Blog for Seattle Childrens)  


To become aware? To obtain new knowledge? To gain a new perspective? To become informed? To become concerned or even empathetic to an unfamiliar situation?September is Childhood Cancer Awareness Month. But What does ‘awareness’ really mean?


The concept of awareness can take on many faces, and its perception can change depending on the person you talk to. To the mother who spends her days at a children’s hospital, it’s a sense of defeat and desperation about the path that life has taken her. To the father who lost his son, a harrowing and solemn reminder of a fierce battle once fought. To the general social media patron, it may be a month of raw images that they don’t fully understand.
This was the crossroad we found ourselves in as we entered the doors at Seattle Children’s Hospital 12 long months ago. The world of childhood cancer was not something that was on my radar as a mother of three (with one on the way), let alone with regards to one of my own children.
When my husband and I entered the hospital and saw firsthand the number of sick children that called these walls home, it was like a slap in the face. The whole experience was so surreal. I felt like a narrator was about to say, “You’re moving into a land of both shadow and substance…you have crossed over into the Twilight Zone.” I mean really! It was like an out-of-body experience that is now our family’s new reality.
Here we were talking to the surgeons about the repercussions of removing a softball-sized tumor from our son’s brain. Atticus was just 18 months old when he was diagnosed with, which was later confirmed to be, a Choroid Plexus Carcinoma. This is a rare form of brain and spinal cancer found in only about 1 in 3 million children. I remember my husband and I sitting down with our amazing neurosurgeons, Dr. Rich Ellenbogen and Dr. Amy Lee, after a long, emotionally draining surgery day and being told that our son’s tumor was malignant.

Finding our guiding light in the storm



I can still feel the wave of fear, hopelessness, and sense of defeat that just hit us. Not to mention the utter terror that immediately followed. We were crushed, and our world was completely turned upside down. I don’t recall much from that day, but there is one thing that I will never forget. In that moment of desperation, the only question we could muster to ask was, “Do we have any chance of beating this?” Because to be quite honest, we were doubtful.
Dr. Ellenbogen answered without hesitation and with conviction, “We always go for a cure, and we can beat this!”
It was like a huge weight had been lifted from our torn and beaten shoulders, our hearts skipped a beat, and in that moment, amidst the storm, we found what we were so desperately searching for –we found HOPE.
This proved to be our guiding light throughout our entire cancer journey as a family. We found hope in the nurse that cared for our sick child, in the residents that took the time to get to know our family, the support staff that ensured our rooms were always clean for our sick son, and in the unwavering optimism of our oncology and neurosurgery teams. We, as parents, found ourselves not only in uncharted territory, but adrift in a terrible storm with no life vest or land in sight. But that hope carried us through it all.

A month of hope and action

September, or Childhood Cancer Awareness Month, has become a month of hope for the Gwilliam Family. I could sit here and tell you that this year alone, over 10,000 children will be diagnosed with cancer in the U.S., and that cancer is the leading cause of death from disease in children. I could sit here and tell you that out of the billions of dollars set aside for cancer research, less than 3% of the National Cancer Institute budget goes to childhood cancer. But, does this really make your more aware? Does this prompt a sense of empathy?
In our family, Childhood Cancer Awareness Month is a time of hope and action.
I recall a suggestion that, “One of life’s early lessons should be that there is great power in the compounding effect of the little things that we do each day. Small and simple things are at work in your life right now, working either for you or against you.” We in the cancer world live off these small things. We live off the hope that the 3% can be stretched a bit further. The hope that more children can survive cancer. We see the hope in the eyes of parents living at the hospital. We see it in the eyes of nurses and doctors as we try new treatments. And we are empowered by hope and action.


The hard truth is that children are dying every day waiting for promises of new treatments that may never make it in time, despite the heroic efforts of those that care for our kids day to day. Our kiddos deserve more than this. They deserve their dream to obtain the simple things in life that we take for granted, like going to school or playing at the park. And they count on our actions for it to become a reality.
This is why we advocate for Childhood Cancer Awareness Month. Our goal is to raise awareness, to promote understanding and empathy, and to empower those who hear us to action. We, along with many others, continue to share hope and continue the search for a cure. We love Seattle Children’s mission of providing hope, care and cures for all children, which echoes each and every parent’s most heartfelt desire. Together, through action, we believe we can achieve this incredible goal.

Thank you all for your support
#AtticusArmy

4 comments:

We are Home?????

8:22:00 AM Atticus Army 2 Comments

Hey Army,

Well, I know that it has been quite a while since we have posted.  Honestly, there isn't really much of excuse except for that we have been enjoying our busy summer and soaking up all the rays we could!  I hope over the next few posts we can reflect on our time since we have been out of treatment and catch you all up.

Wow, where to start......  Um, I guess WE ARE HOME!!!! It has been such a crazy, odd, and surreal feeling to be home from Seattle.  There is something to be said for "actively" combating something and working toward a common goal every day.  Emmie and I have had many people ask us," How did you do it?  How did you find the strength and grace to make it through such a horrible trial?"  To that, our answer is the only answer I think anyone in a situation like this can have.  "We did it because we had to."





There really isn't much in life that can prepare you to receive the news that your child is very sick, let alone that your child has cancer.  Then to follow that up with you need to move across the state, find a place to live, try and make a life for your other children, spend your days and nights at a hospital, and watch your beautiful warrior suffer and know that there isn't anything you can do about it.  You get through it because you have to.

Life is comprised of small victories.  Finishing another school year, obtaining your driver's license, asking the girl out that you've had a crush on for years, the birth of your first child, and so on.  Living through childhood cancer is the same, but the victories tend to be smaller and much closer together.  No vomiting last night, getting the temperature taken with out crying, leaving your feeding tube in your nose for a whole day,  finally saying hi to the nurses that come in with out telling them to NO.  Your horizon moves from goals for a month or year, to "what do we need to do today?"

"If I can just get through tonight I will be fine..."

Or even at times, "Only 2 hours left.... we can do this..."



Now, being home it is a bit of a transition back to "normal" life.  But is that possible?  I mean what is normal really.  Recently our family was invited to a Camp for families that have been affected by Childhood Cancer (more on this amazing camp later) but one of the things we talked about was where you are on the mountain.  They compared our cancer journey to a mountain, with the peak being, well honestly anything you wanted it to be, but in my mind, the tip was the end of treatment.  So then the question becomes how to navigate down this GIANT mountain you just climbed.  If anyone here does a lot of outdoor climbing or similar such things you know that the way down at times can be just as hard, and dangerous as your ascent.

Many parents shared how they were scared to come all the way down for fear of many things such as relapse, or other such complications.  As I sat there and thought about it, it occurred to me that it is much more likely that we really never do come down, instead we find a level plateau that we can balance our new life on.  Having been home for a bit now I can understand the hesitation of wanting to dismiss the possibility completely.  You have to mentally prepare your self for something statistically many times in an eventuality.  Not to mention that MOST if not all kiddos will have deficits they will have to cope with the rest of their lives.

This is not to say that we are not so ever grateful to be home and have our little warrior with us!  we feel like we have made the most of this last summer and have had a blast.  We were able to attend Disneyland, see the red wood forest, go to the beach, visit family, go camping, and many more things which are to come.  But in the mean time we will continue pressing forward and fighting the good fight!



Thank you all for your thoughts, prayers, and continued support.

2 comments: