Spencer's journey began on August 20, 2020 (age 9), when I brought him into Urgent Care for persistent abdominal pain. Blood in his urine and a high platelet count were our first indicators that something was not right. We were sent from Urgent Care to the ER at Sanford in Sioux Falls. Additional imaging showed a mass in Spencer's abdomen that should not have been there.
On the morning of August 21, 2020, the Sanford pediatric surgical team spent 4 hours trying to remove the mass, but it was connected to his colon and was too complex to resect. In our consultation with the surgeon, we learned that the tumor was malignant. We later learned the cancer's name was rhabdomyosarcoma and was level 3.
Over the course of the next 18 months, Spencer underwent 2 surgeries (had a successful resection of the tumor in Dec. 2020 - filled a 1L container), 42 weeks of chemotherapy, 26 radiation treatments, and 26 weeks of maintenance chemo. He completely missed his 4th grade year of school and received chemo during his 5th grade year. On March 15, 2022, Spencer received a PET scan result stating "stable exam without evidence of residual/recurrent malignancy". He had done it! He had beat the beast!
Until . . . the return of abdominal pain. On November 29, 2022, via a non-routine CT scan, another large mass was discovered in Spencer's abdomen. He underwent surgery on Dec. 5, 2022, at which time the tumor was once again "unresectable" and was biopsied to confirm rhabdomyosarcoma. He had relapsed within 8 months of clearing the original tumor.
The prognosis we received was far from favorable. We truly didn't know if our child would be with us for Christmas.
We chose to get started on a new type of chemo, and at the same time, this mama started reaching out to everyone for help. Through the grace of God, a friend of a friend recommended I join a rhabdomyosarcoma Facebook group. I did. And shortly after, I received a Facebook message containing the cellphone number of a urology surgeon from Mayo Clinic in Rochester, MN (who has specializes in sarcoma tumor removal). I reached out and was successful in connecting directly to this surgeon. That changed everything for Spencer's relapse journey.
We ventured to Rochester on Jan. 24, 2023, and began another rollercoaster ride of a lifetime. On Jan. 27, Spencer underwent a successful 10-hour surgery to resect this tumor. Included in this surgery was a treatment called HIPEC where 107 degree chemo was cycled through his abdomen for a period of 60 minutes. The after-effects have been tumultuous. Spencer has been back to the OR 7 additional times since Jan. 27. Spencer's intestinal tract completely shutdown for 21 days along with loss of control of his urinary tract. His surgical site got infected, and he ended up with C Diff. He has been at Mayo Clinic for almost a month and a half, and we are hopeful that he'll soon be able to return to the chemo protocol. Our hope is to return to Sioux Falls for chemotherapy where Spencer can be at home in Brandon, SD.
Spencer is one of 6 boys (4 brothers and 1 stepbrother). Traveling this journey with our large family has been challenging to say the least. However, every step of the way, Spencer has remained the most uplifting, positive spirit. His faith has carried him through some of the toughest days, and he's always willing to give a smile. He has learned to advocate for himself and has become quite popular amongst the nurses at both Mayo and Sanford.
I could not be prouder of this resilient young man. He is inspiring people near and far. And he has got one strong army of prayer warriors walking right beside him. He wants to be a part of the movement to find a cure and while doing so, help other families on this journey. He is one amazing kid! And as Spencer recently stated; "I've done it once. I'll do it again". #spenceruniverse #goodvibesonly
