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Caden’s Story

Welcome to our CaringBridge website. We've created it to keep friends and family updated on Caden. Please note: CaringBridge has a link for donations. All donations made here go to CaringBridge to support their website. Donations do not support Caden's cancer treatment. If you want to show your support for Caden directly, please go to www.team-fc.com or the Caden Shrauger Benefit Fund at Big Sky Western Bank.


Caden Shrauger - a happy, smart, kind, and loving little boy growing up in Bozeman, Montana. From birth, he could be found spending his summers camping at the lake, often entertaining his older half-siblings and all others he encountered with his silly antics. Winters were spent exploring Montana’s snowy landscape and learning to ski. At age 3, he started pre-school and was especially proud of becoming a big brother in October 2011.


In March 2012, three months shy of his 4th birthday, Caden began complaining of occasional leg pain. Then, he developed a low-grade fever and began complaining of neck and hip pain. The fever and pain persisted and Caden became very lethargic. Blood work showed very high indicators of inflammation and anemia. X-rays, ultrasounds, and a bone scan all appeared normal. Nothing was lining up to provide a clear diagnosis and his fever and pain continued. An MRI then showed abnormalities in the bone marrow of his hips, legs, and spine. His right adrenal gland was also slightly enlarged.


On March 30, 2012, Caden was flown 700 miles from home to Seattle Children's Hospital. The initial fear was leukemia, but a bone marrow test pointed toward another type of cancer – Neuroblastoma.


On April 3, Caden was diagnosed with Stage 4, High Risk Neuroblastoma, a solid tumor cancer of immature cells within the sympathetic nervous system; it is difficult to treat. Caden began an aggressive course of treatment on April 7, 2012. Six rounds of high dose chemotherapy were administered over 5 months. On July 30, the primary tumor site and adrenal gland were removed. Slowly, between the associated side effects of vomiting, exhaustion, mouth and throat sores, blood infections, NG feeding tubes, and viruses, Caden’s strength and cheerful, funny nature returned. He began to walk, even run, and play with his sister again.


Scans in late August 2012 revealed that although the cancer was not worse and had been reduced some, it did not respond as well as hoped, nor enough to proceed with the anticipated autologous bone marrow transplant. Caden then completed a seventh round of chemotherapy and traveled to San Francisco for specialized intravenous radiation therapy (I-131 MIBG therapy). This treatment significantly reduced the amount of cancer present, and Caden moved forward into transplant and traditional radiation therapy in early 2013.


In March 2013, he began six months of immunotherapy, including five rounds of difficult inpatient antibody infusions and six rounds of therapy trying to turn the cancer cells (immature nerve cells) into benign, matured nerve cells. Finally on September 11, 2013, after 17 months of treatment, scans showed that Caden had "no evidence of disease". He and his family lived in an RV in the hospital’s parking lot for over a year and returned home to Montana.


Less than two months later in November 2013, a small amount of neuroblastoma was found in his marrow, and he was then considered "relapsed". His blood was collected for a trial in Texas using his T-cells; the cells are engineered in a lab to fight neuroblastoma. During the time while the cells were engineered and FDA requirements of the trial were worked out, he did six rounds of the medication that can mature the neuroblastoma cells into benign ones from home. During that treatment, he had two sets of "no evidence if disease" scans but the final one again showed a few neuroblastoma cells. When preparing to go to Texas for chemo and his T-cell infusion, his scans showed "no evidence of disease" and he became ineligible for that trial but eligible for another trial available through Primary Children's in Salt Lake City. In July 2014, Caden started on a low intensity drug called DFMO that will hopefully provide a good quality of life and keep his disease at bay.


We all long for the day when a cure is found.


FC

Latest Journal Update

Three Years Later..............

TUESDAY MARCH 31, 2015  DAY 1095

Three Years ago today Caden and I awoke to our first morning in a hospital room at Seattle Children's Hospital, still not totally clear how much our lives would change at 3:00 this afternoon………….

The following paragraph is from the original blog in 2012…….


3:00 pm March 31st, 2012 (3-3-31-12) Docs are back. I am sitting in a chair next to Caden, he is on the bed, robin is on the bed next to him as well.  Docs tell us that it is not Leukemia but that they have most likely found a cancer in his marrow.  They call it Neuroblastoma. There are many different types but they don't know which one yet.  More tests................   God-Damn-It, my heart rate is screaming and my whole body is going numb, son of a bitch what did we do to piss off the big man upstairs so bad?...............  Doc's leave, Robin (Pam’s sister) and I hug and I completely break down........Robin heads out to pick up Pam at the airport, how in the hell am I going to tell her that her perfect little boy is so sick?


I fear that those moments will forever be etched in my mind…….No matter how hard I try, those few brief minutes will not go away.  I remember where I was sitting, where Caden was, where the docs were sitting and the looks on their faces…. I can still smell the smells of the old cancer unit……. I remember the tree that was outside the window that was beginning to bloom, so strange with so much snow back home……. the shitty chair that they tried to pass off as a bed……the fear of how to share the diagnosis with and the look on Pam’s face when I told her that Caden had Neuroblastoma……..the complete unawareness of the 136 nights in a hospital room that we would spend over the next many months and the indescribable and unimaginable things they would do to our child during that time…

Three years later,  he has been a patient at Bozeman Deaconess, Seattle Childrens, UCSF Bennihoff  (San Francisco), and Primary Childrens (Salt Lake)…… He has frozen blood cells in Houston at Texas Childrens and has doctors who have consulted on his case in Grand Rapids Michigan at Helen Devos and New York at Sloan-Kettering……….. For a six year old that is a rather impressive list of highly educated people he has been hanging out with ……..

As March 31st started to come around this year I asked Pam if I could write the blog…… This blog thing was born out of necessity to get my thoughts out, to share with our friends and family back home, to vent, to drop a few swear words and to try and keep from snapping…….  As oddly as it sounds, I started writing to document what I thought would be a few short days……… who knew it would be three years and counting?   I wanted to write once again because I figured it was about time for me to carry the weight once more, to let Pam off the hook and to share a few colorful thoughts with you all.  I thought I would have a bunch to say…..oddly enough I find myself still numb and amazed that this has happened to our family….strangely I find myself at a loss for words and in a lot of ways at peace with our new reality…..

What I do know is that Caden is the toughest kid that I know……really, seriously, the toughest person I know……. he takes every step of the way and powers through it and most of the time doesn't complain one bit……… there is so much our world can learn from these kids…… so much I learn every day we are on this journey with him……with those we have met along the way.

My perspective on so many things in life has changed……..this will sound terrible, but in a lot of ways, Cadens illness has been a blessing to us all…… Many families don't survive the stresses of pediatric cancer….thankfully we have. Oddly I believe it has made us stronger.  For Pam it has renewed her faith in Him…… for me, it has began that journey……  Pam will likely lap me a few times around the course before I get out of pit road but at least I am ok with starting the engine…..

We currently live our life in 3 month increments for fear of the unknown should we get bad results..…… we get scan results, we plan the next three months and don't go much beyond the next set of scans …….and the cycle repeats…….eventually we will go to six months, then to 12………Speaking of scan results…..for those of you who have not heard yet, Caden's bone marrow came back today finally, it is getting harder and harder to wait for those calls……..the results are all clear and we are now able to figure out the plans for the next three months……

Lots will change in the next three months for sure…….. I will end my career with Bozeman Fire, we will start a new business adventure, Pam and I will celebrate being married 10 years and most importantly Caden will turn 7!  Now if we can just keep Princess Camryn from taking over the world it appears we will have a good start to our summer…..

I close today with two simple words. Words that are directed to the friends and family that have been with and supported us along this journey from day one.   Complete strangers who have followed Cadens story and greet us when they meet us.  The multiple foundations, individuals, businesses and non profits that assisted us financially along the way. The BFD staff that carried the weight while I was gone. The doctors and incredible nursing staff and support staff that treated us like we were their very own family members. The nearly 190,000 visitors who have read this blog. And finally, to the researchers at Ben Towne and elsewhere that are working tirelessly to find solutions to these diseases. From our family to yours, THANK YOU. We Love you all and could not have reached where we are today without you.


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Comments

18 Comments

Helen Naffziger
By Ron & Helen
Thank you so much for this post Jason! Ron and I are so thankful that we have been Blessed to have spent so much time with you and your family and we're looking forward to many more! Caden has taught me so much in his little life. Know we are thankful for the good news and will continue praying for good results for the years to come. We love you all.
Marcia Fairhurst
By Marcia Fairhurst
Thank you for sharing this journey of healing with us. We have been privileged to be allowed along.
May the road ahead be smooth for your family.
Janet Coughlin
By Janet Neubauer Coughlin
I want to thank you for starting this blog and sharing this journey. As your cousin, who has been remiss at keeping in touch, I appreciated being in the know. I've been reduced to tears many times reading your and Pam's thoughts, feelings, etc. I can only imagine how difficult this would be for a parent. The struggles can drop us to our knees and teach us about a higher power if we let it happen.
Carol and Cliff Rufenach
By Carol and Cliff Rufenach
Wow...I am impressed! For a guy (:....your ability to put your thoughts down in black and white is impressive. And your insight into the big picture of your lives...all of you....being able to say that this experience has been a blessing....that is profound. We are grateful for you and Pam sharing this roller coaster ride...it's difficult to verbalize how much it has meant. We are in awe of you and Pam, and most of all Caden...but also the doctors and caregivers and brilliant people around the world who have made Caden's 7th birthday a possibility.
Glenda Howze
By Glenda Howze
I'm so glad that you chose to write the blog this time. I remember that first post very well. The feeling of hopelessness - not knowing how to help, how to pray, the complete and utter lack of understanding of how this can happen to such a precious little boy. What a journey you all have had and I'm so grateful that you have shared that journey with all of us. Blessings to you all today and always!
Meredith Haff
By
FC! Never more loud & true!

We started watching the PBS series on Cancer. Couldn't help but watch and keep you guys in mind.
Susan McConnell
By Susan McConnell
Still praying for all of you! Thank you for sharing your thoughts and feelings. As a cancer survivor I know the feelings from my adult point of view. I am amazed by the strength and love shown by parents of children with serious illnesses. I can only imagine what you are going through because you explain your thoughts and feelings so well. My heart goes out to you and I pray for continued strength for all of you and wisdom for Caden's medical team.
Hang in!
Sue (From Jim Hensley's Church in CT where many people pray for Caden!)
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Gina Loss
By Gina Loss
I think of you guys often, and this path you've been given. I am so very glad you've been able to move past some of that maddening craziness and have at least a few moments of near-sanity, near- normalcy. I pray it will only get better from here. Blessings to you all!
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