Our Journey

I often joke that it took us six tries to get a red headed child. Eli is that child. We later had another red head, so two of our nine children are red heads. Little did I know the turn our lives would take the year Eli turned 10.

September of 2018, Eli noticed a bump that turned out to be a swollen lymph node. It wasn’t until October 30, 2018 that a biopsy confirmed the diagnosis of Alveolar Rhabdomyosarcoma. While doctors use a risk stratification system to help guide treatment and determine likelihood of relapse and five year mortality rates, suffice it to say, Eli was stage IV, with tumors in his left foot and calf with metastases to his lymph nodes behind his knee and in the left pelvic region. This put his five year survival rate at 10-30%. As of writing this, he has made it two years so far.

October 29, 2018- Eli at the hospital the day before the biopsy confirming cancer

Frontline treatment went spectacularly well, with few side effects. His tumors shrank and almost disappeared by week 9 of chemo. He had the remaining foot tumor resected, then did 6 weeks of radiation, and continued the chemotherapy protocol for a total of 42 weeks. There was no evidence of disease at his 30 week scans in May 2019. There was still no evidence of cancer at the end of frontline treatment (week 42) and he started 6 months of maintenance chemo at that point. Maintenance chemo was a lightweight regimen, with no inpatient hospital stays. Our family life began to feel normal again and we worked to return to a more regular routine.

Eli officially finished chemo March 1, 2020. 2 1/2 months later, just a week and a half after having his port removed, the cancer was back.

May 4, 2020- The day Eli had his port out

We first noticed the recurrence when Eli found a lump in his arm. Scans confirmed the cancer had returned in his left foot and thigh, and right arm. Because it had jumped to a completely different location so soon after treatment, and because it has a gene fusion associated with the most aggressive form of this cancer, we were told in no uncertain terms that Eli’s time was limited and there was no longer any hope of a cure. We were told death occurs within 2-12 months of recurrence in Eli’s situation in 95% of cases, with a median survival of 9 months. That was 5 1/2 months ago when the doctor said that, May 27,2020.

May 19, 2020- Back at Primary Children’s Hospital with a lump in his arm

Eli is currently taking a medication called Regorafenib (brand name Stivarga) that has shrunk his tumors and seems to be keeping cancer at bay, for now. He also had radiation to a few of his tumors to maintain quality of life. We have spent these last several months trying to fit as much living as possible in the short amount of time we have left with him.

July 15, 2020- Camping at the beach. Knowing the cancer was likely to return, I booked our camping spot 6 months in advance.

Eli is my young adventurer with an old soul. His default birthday and Christmas gift is a roll of duct tape. He wants to be an inventor when he grows up and is enjoying his engineering class at the high school. Had the TSA searched his suitcase as we went through security for a recent trip to Florida, they would have found a coconut, duct tape, and paracord (he wanted to bring the shovel I bought him home, too, but I was pretty sure it wouldn’t have made it through and I didn’t want to try to explain what Eli planned to do with a shovel, duct tape, and paracord, let alone the coconut.

October 26, 2020- What more do you need than sand and a shovel?

Eli enjoys his new Oculus Quest 2, a gift from friends of mine who have experienced there own cancer journey while Eli has been going through his. He also enjoys playing on our Nintendo Switch, Minecraft and Quake on the computer, and wants to learn to code a Minecraft mod.

October 15, 2020- Playing with the VR, sometimes the only thing making clinic visits tolerable

He continues to make plans for next summer and just told me what he wants to do for Halloween next year. He knows the expected outcome of his cancer, but his main concern is for how we will feel when he dies and says he has “made [his] peace with [his] fate”.

June 30, 2020- Eli asked to volunteer at This is the Place Heritage Park next summer. We have volunteered there in the past and they kindly granted his request to be a blacksmith apprentice.

I don’t think I’ve made peace with it, but I endeavor to be the mom he needs at this time and trust in God’s plan that our family will be together in the eternities, even though our time together may be cut short for now.