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:

Cancer can steal a lot of things..... But not this!!!

9:34:00 PM Atticus Army 6 Comments

Reflecting back on some of the feelings from our journey…


I remember the day we found out about Atticus’s Tumor so vividly! When I think about that day I often get a sick feeling in my stomach, sometimes I feel as if I cant breath for a minute! Its so crazy how certain things will trigger that awful sick feeling again. I will never forget that feeling! I know I'm not alone and that several other parents and families have felt the same feelings I have felt! Some days I wish so bad that I didn’t know what it feels like to be told my child has cancer! Some days I wake up wondering if it was all a dream and then quickly realizing its our life! The dark cloud of Cancer doesn’t just go away after treatment or resection of the tumor. It lives on, and day after day I’m reminded of it! Some days are better than others and with time I’m told it gets easier!  I don’t want to wish my days away, hoping that it will go away someday or that I wont have to worry constantly if the cancers back! That’s not the life I want to live! That’s not the life Atticus wants us to live either! There is more to life than worrying about cancer day in and day out! We will not let cancer rule our lives!  Cancer will not steal our joy, our hope, or our life's dreams! It will only encourage us to live life more fully and reach for all our dreams! We will continue to press forward with unwavering faith and hope!




When Cancer treatment is over you have so many mixed feelings and emotions as a parent and I’m sure as a patient as well! We were so happy and overjoyed that Atticus had completed and conquered a major 8 hour brain surgery and now Chemo treatment!! We were beyond grateful for him to not be infused with the toxic drugs that made him profusely sick and vomit his guts out! His little body overcame so much, between so many infections, transfusions, lab draws, dressing changes, surgeries, x-rays, CT scans, MRI’s and the major scare of Pneumatosis and Typhlitis! Atticus was and is a true hero! 

But then the fear sets in! Your done with treatment and now we are not actively doing something to kill the cancer cells!! You wonder, did the chemo kill all the cancer cells, Will the cancer come back, Will the scans be clear??? The thought of leaving the hospital permanently and not going back until the next scans and check-ups made me so uneasy! Your life has been ruled and dictated by the hospital for so long, it was our safe haven! The thought of leaving Seattle Children's Hospital and walking out those hospital doors was absolutely terrifying!

Leaving the Cancer floor for the last time!  Feels so so good.


Oh how we had longed for this day, to be able to go home and be a normal family! I sometimes found myself wishing for our old life back! The life we had as a family before cancer! It was in that moment of coming home that I realized this is our new normal! I needed to learn how to deal with this new normal of Cancer forever being such a huge part of our lives!  Coming home was very emotional and hard at times but it has also been better than I could have ever imagined!  Finally seeing Atticus run, giggle, play and be a naughty 2 year old has brought us all happiness beyond our imagination!

Leaving the Hospital after his LAST treatment!!

Even though I HATE cancer, (and i dont hate many things) it sure has taught me and our family some of the best lessons in life! We have all grown so much and we are so much stronger and nothing can break the special bond between us!  I learned how to truly love with all my heart! I thought I knew and understood what faith and hope was, I learned really quickly what faith really is and how to trust completely in the Lord! Sending your baby into the O.R. for extensive brain surgery not knowing if you would ever see him again was a faith and trust builder for sure! I learned more about peace in those quiet hallowed halls of the hospital while holding my sweet boy in my arms. I've never felt so close to heaven as I did during this time! I learned the importance of hope, charity and service! Atticus has taught me more in the last 8 months than most learn in a lifetime! And yet he continues to teach me and remind us all each day of what life’s about! He has such a happy soul, it is truly inspiring. Cancer stole a lot from us, but we won’t let it rule our lives! Life can still be happy and we can and will find joy, happiness and hope in each day! Cancer has made us all reach higher to pursue all our dreams and to never hold back in fear!  I am grateful for this life we have been given and I will make each day count! This life was made to be cherished! 

Atticus is happy to be home!



Thanks for all your support!
#AtticusArmy

6 comments:

Happy Hollidays!!!

3:21:00 PM Atticus Army 1 Comments

Hey Army,  1/11/17

I know that it has been a while since the last post.  I would like to apologize for that, but I hope that as this blog unfolds you might see some of the reasons that we have missed the last few weeks of posts.

First off Merry Christmas, and Happy New Years!

Merry Christmas from Atticus


Can you believe that it is 2017 already!?!?!?  It seems so surreal that we are here already and even more so that our crazy little family has lived here in Seattle for close to 5 months!  It was pretty funny this morning as Emmie and I sat down and reflected that we have been here in Seattle much much longer then we ever lived in Pullman, where technically our house still awaits our long over due return.  Some of you may recall, but for the rest of us we only lived in Pullman for 3 measly weeks when we found out about our son's tumor, and have been in Seattle ever since.






Well, wow, I don't really know where to start on the month of December....... I guess surgery.  Surgery went fantastic in spite of our worries, and our little warrior recovered fantastic as he seems to do.  He really is quite resilient in that way, we feel that we have been so blessed.  We were in the Hospital throughout that weekend, and over his birthday, and were subsequently discharged on Monday.  Chemo was set to start on that Thursday for our first of 3 cycles of what they have termed "consolidation".

I feel that a little bit of background info may help shed some light for all of you that aren't living this each day as it may be a bit confusing. Our treatment comprises of 6 cycles, and two phases.  We have finished the first entire phase, and now have entered the last phase...... consolidation.  This phase was developed primarily by the chief oncologist here at Seattle Children's in leu of using radiation. As a general practice radiation is avoided in young infants and toddlers if at all possible.  Radiation is, however, very effective at destroying any left over ruminants of cancer left in tissue, as well as those cells that may be floating around from surgery.  So, this consolidation protocol was developed to address that issue.

Giving Dad kisses


Really it makes sense if you think about it.  The goal of surgery is to remove the tumor, well at least what parts you can see.  After all the hallmark defining principle of cancer is that it ignores cellular boundaries and invades other tissues.  So typically when a surgeon plans his approach it involves "margins" or in other words to take enough surrounding tissue around the tumor to catch all of the invasive parts of the cancer.  As you can imagine the brain does not afford much wiggle room to have sufficient margins.  And thus consolidation was born.

Our protocol consists of two different chemotherapy agents given over two days.  The main one is called thiotepa, and let me tell you it's a beast!  Most of the ones we have used up to this point have been excreted through the urine, and so we have had to be on a lot of fluid and diuretics to help make sure that there is no damage to the kindness or bladder.  Thiotepa in contrast, is excreted through the skin.  So... On comes the baths!  And boy did it keep us busy.  We had to bathe him 4 times each of those 2 days and for 36 hours after.  Each bath time we had to change his cloths and bedding.  Then once each day all of the dressings for his central line, and for his feeing tube.  Those of you here that have been through a central line dressing can appreciate the task of doing this each day on a toddler.

Oh the baths!!


Once we cleared the 36 hour mark, we had a day of rest before we did the stem cell transplant and his nulasta shot.  Atticus of course handled it like a champ!  He was however, quite nauseated and was throwing up pretty often.  We had him on 4 different anti-emetics (vomiting) medication to try and help, but to no avail.  But as a side note, if anyone needs a professional throw up catcher,  I think I could help! Haha. I have become quite good at catching that throw up while holding his feeding tube in even in a sleeping stupor at 3 in the morning.  There is nothing worse than having a a vomiting toddler, that you then have to put a feeding tube back in!  It is no fun!  But, we made it through and left on Monday evening after we finished everything with his stem cell transplant.   In between cycles 1 and 2 we had our stem cell aphesis or collection, and this is what that was for.  He now gets a form of auto-transplant (getting something back from him self) of his white cells.  With how aggressive this phase is, it is quite likely that his numbers would never recover if we didn't have these cells to give him.  We are so grateful for modern medicine!!!



But, we made it through and by the end of the three days of having to do this we were pros!  The following few day after the stem cell transplant Atticus was pretty nauseated, much more then usual after chemo.  I was a bit concerned about him getting dehydrated and he was looking quite pale.  I called on Wednesday and they said it is still most likely from the chemo and if he is still just as bad in the morning to call.  So Thursday morning came and sure enough he was still throwing up in spite of all the medication we were giving him.  They had us come in and they ended up admitting us to help him get rehydrated and get on top of his anti-emetics since there is no point to continue giving him medication that he will just throw up! Haha. In the hospital we can at least give it to him IV so that should help.... The plan was to spend a few days and hopefully get out Saturday (Christmas Eve) so that we could all be together as a family.



We actually had a GREAT holiday planned!!! Emmie's whole family planned to come for Christmas and I was able to find a big house that we all went in on to stay under the same house.  We were very excited!!!  We had just a great plan, get loaded up, he can get his blood, and platelets while we were there, and we would be out for Christmas!!!

The other kiddos had great fun with the cousins!!!


Oh how our plans changed, and what a difference 24 little hours make.  By Friday morning Atticus had spiked a fever, and was so so very sick.  In fact, he didn't even wake up at all Friday or Saturday.  We were started on some antibiotics when his fever spiked early Friday morning, and by Friday afternoon he was so sick the doctors ordered an abdominal X-ray.  Well turns out, he had pneumatosis (gas found within the intestinal wall) and typhlitis (inflammation of the cecum).  Pneumatosis is especially concerning as the gas is created as a by product of bacteria that has penetrated the intestinal wall and can, if left unchecked, end in a ruptured bowel.  Which is NOT a good thing and can lead to many other complications.

We actually ended up hitting 105!!! We had towels and such trying to cool him off.


We hated seeing him so sick, and not able to wake up!

Usually your immune system will keep the bacteria that is normally found in your system in check.  However, this last chemo cycle was so rough that there were no "guards" left at the gate and the bacteria was able to make it though.  First order of business was to stop all food and liquid to the gut, and cut off the supply of food, and other such things to the infection.  We had to replace the normal feeding tube with a replogle tube, which is very similar but a bit bigger and more stiff then the other one, and it allowed us to hook him up to a suction system to pull everything out of his stomach.  And OH WOW... the stuff that came out.  It was this thick, dark green crap  that I just felt sooo bad there was in there in the first place.  And all of the sudden it totally made sense why he was so nauseated!!!

This was just a little bit of what came out of his stomach!!! it was gross.


So, a long story short we spend 2 entire weeks in the hospital recovering.  He was put on complete gut rest and was put on a TPR (total parental nutrition) diet which is given completely through IV.  After a week of that we spent the next week regaining his strength and trying to get him eating again.  It was quite the process.  We had a few really scary nights filled with extremely low blood pressures and high heart rates, as well as and entire 48+ hours that he didn't even wake up.  Luckily he was able to pull through and two weeks from when we were admitted we were finally able to get out of the hospital!

Atticus loves doing little coloring projects, and going to song time!


As soon as we made it home we had our own little belated Christmas for Atticus and he was finally able to open his presents.  I would like to say thank you so much for everyone that helped us this Christmas by way of presents, prayers, thoughts, and phone calls.  All of your support has been so heartfelt and we have benefited from it so much this holiday season in spite of our trials.  Christmas was so special to spend with family, and we were still able to share it with our little gold warrior.





There will be some big changes coming to Atticus's treatment protocol in the coming weeks, and we will keep you updated when they are more concrete.  The primary reasons are because of how hard this last cycle was on him, and the possibility of him having Li-Fraumeni's among  other things.  We will touch on those in the next post as we should be hearing back from the genetic testing any day now.



Thanks for all you support
#AtticusArmy



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