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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

DFMO Cycle 4, Hearing Loss

No, I didn’t think I’d need to post again so soon!!  This one is small beans compared to the usual stuff, but we want to keep everyone in the loop.  At Caden’s appointments in Salt Lake City on Monday, we learned that Caden has additional hearing loss, likely from the DFMO.  This was not hugely surprising to Jason and I as we had noticed he was hearing things incorrectly more frequently.  Unlike the permanent hearing loss caused by the chemo, the hearing loss induced by the DFMO is expected to be temporary, and the hope is it will reverse upon stopping the drug.  At the same time, Caden could (hopefully) be on this trial for up to two years, during his early school years.  And the new loss is in the lower, speech frequencies.  So, his SLC trial doctor, Dr. Fluchel, wasn’t sure if he should or even could stay on the trial.  In all other areas, he thought he was doing phenomenal.    Dr. Fluchel consulted with the study chair and staff in Grand Rapids and their threshold is to stop if a hearing loss of 20db is seen.  Caden’s loss was 10db.  So, we forge ahead but will be watching it closely.  He’s only three cycles in, so we’re really hoping it stabilizes.  His next hearing test will be in early January with his next set of scans, unless we notice a substantial change before then.

In the meantime, he’ll get his hearing aids adjusted here in Bozeman next week and we’ve already started the process to get him hooked into an FM system at school.  For those unfamiliar with it, his teacher wears a microphone necklace which links to his hearing aids and allows her voice to go directly into his ears.  He did ask if he’d still be able to hear his friends, and he will, but her voice in the classroom will hopefully be clearer this way.

So, after 2200 miles in the car, we are happy to be home again with a renewed appreciation for the simple challenges of normal life.

FC

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Comments

2 Comments

susan backstrom
By susan backstrom
You are awesome Caden... keep it up buddy.... my prayers for your ears... FC You got this
Harriet Gagnon
By Harriet Gagnon