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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

Sharing the Good News

This evening, while dinner was cooking and I was playing a math game with Caden, holding Camryn on my lap, the phone rang.  The contact name programmed into my phone blazing across the screen: "Seattle Children's Hospital - Incoming".  It always makes my heart stop, even if they are just confirming appointments.  Today, though, I know the person on the other end holds information that will dictate our lives.  That I will be overcome with great relief or utter despair in just a few short sentences.  The person on the other end is Dr. Navin Pinto.  He's a new-to-Seattle neuroblastoma doctor, working with Dr. Julie Park.  I have watched him present in a neuroblastoma conference video during his time at the University of Chicago.  As I sit down away from the kids, my mind races, trying to grasp the significance of a neuroblastoma doctor calling and not our nurse practitioner.  Fortunately, after his brief introduction, he says the words, "I wanted to share the good news."  And relief washes over.  The possibility of either passing out or throwing up drifts away.  He tells me that he's reviewed the MIBG report and scans and the bone marrow biopsies and aspirates with Dr. Park and all are negative for evidence of disease.  To say that we are over the moon about this is a gross understatement.  Before this news, I was thinking of writing about the challenges scanxiety brings.  That it changes me into a person I don't particularly like.  That we have now gone 6 months between scans and I can see the change as scans approach.  I can physically feel the tension building to the point that it hurts.  That at a blood donation last week, my blood pressure was quite high, a physical sign of the stress.  That I mentally compare myself to a wounded animal, ready to snap at anyone that comes too close, even those wanting to help.  But, in this moment, all I can feel is gratitude toward God.  This goodness, this place that we're at, the miracle I feel we've been given ... I know it comes from Him, and I can only offer my praise and gratitude rather than dwell on the hardness of it all.  It'll take me weeks to recover from the stress of the past two days, but I can simply just say, "Thank you, Jesus".  Thank you for this opportunity to raise such a wonderful boy, to be graced with more time.

Caden (and Camryn) did wonderful during our trip.  I was completely exhausted and on edge the whole time, and they would get wild and crazy between appointments.  But, really, they did what needed to get done.  We also had to put our beloved cat, Coco, down on Monday on our way to the airport, making their little hearts hurt with loss and sadness (mine, too).  Caden's IV took two different nurses and both arms before they got it.  He didn't cry once.  He persevered like a champ.  He held perfectly still while they scanned him for over an hour.  It breaks my heart.  It makes me proud.  I am thankful.  We saw lots of wonderful people while we were there.  The silver lining, shining God's love.  We became attached to the medical staff and to hear so many of them say that seeing Caden healthy really makes their day and boosts them up in an often hard job, again makes me so thankful that we have this opportunity.  We don't know what lies ahead for Caden.  So many risks still, but right now, right now.  I won't let the worries of tomorrow steal the joy from today.

Next week, we'll travel to Salt Lake City for the continuation of the DFMO trial he's been on for the past 18 months.  He'll have a checkup there and get another 3 month supply of the drug.  He will continue to have monthly pediatrician visits at home.  He doesn't need to scan again in Seattle for another 6 months, at which time, he'll conclude the two year trial of DFMO.  Amazing, simply amazing.

Thank you for your thoughts, prayers, and understanding.  We feel them, we believe in them, and are beyond grateful.  Our gratitude is a reflection of our love for you all.  We have many friends that need your prayers, for their fights, for their grief, for the unknowns.  May they feel the peace that passes understanding.  Never far from our hearts.

FC 

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Comments

21 Comments

Marcia Fairhurst
By Marcia Fairhurst
Pam, You write so eloquently, thank you for sharing these times of both heartache and joy with the rest of us. We rejoice in the positive results you have received and wish you years of happiness ahead. Marcia
Carol Kimble
By Carol Kimble
So thankful!
Neeni Francis
By Neeni Francis
Praise God! Thank you God! Pam - what a beautiful journal posting. Happy tears are flowing. I can't even imagine all your family has been through. Caden is such a gift. You all are. Stay strong! I wear my "FC" sweatshirt all the time - thinking of you. Love Neeni
Cheryl Hanington
By Cheryl Hanington
Oh my - God is Good... God is Amazing... God's blessings are beyond our comprehension. Thank you Jesus for hearing all of our continued prayers and blessing Caden and his family with good health!

So very very happy and relieved to hear such wonderful news.

Love Cheryl & David
Judy Hensley
By Judy Hensley
Praise God from whom all blessings flow! We have been anxiously waiting to hear the news, praying it would be as you have delivered! I checked late last night to see and have to admit, I was a little scared when nothing was posted. I can't imagine what you go through during this time. God Bless you and yours! We are SO happy for you!
Rainy Wagner
By Rainy Wagner
A happy dance! I did a happy dance and shared a happy tear of joy! over the moon for you all!!
Patricia Traviglia
By Pat Traviglia
So thankful for your good news and also thankful for the fact that you share it with us. As we travel along with you, we always keep you in our prayers. You certainly put things in perspective for me ~ I have a quote that I look at each day "Nourish each day". May you nourish and enjoy each day.
Erika Tetreault
By Erika Tetreault
Wonderful news! Your past was beautiful too. You have such a way with words! Thank you for sharing your experiences. Hope you and your family can breathe deeply now now and enjoy your time together!
Shyree Veltkamp
By Shyree Veltkamp
Amazing news! Amen. Go Caden! We will continue to pray for you all and rally behind you lil buddy.
Nancy Brill
By
Wonderful news to wake up to, so very happy for you & your family!!!!
Thank you again Pam for your heartfelt updates. G-d bless you all!