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Eli’s Story

Site created on July 31, 2023

It’s been a crazy year.

In June 2022, Eli and I moved to Rochester, MN - freshly married and ready to start our new jobs.

By October 2022, Eli was diagnosed with Stage IV ALK-Negative Anaplastic Large T-Cell Lymphoma after months of sore and swollen lymph nodes, daily high fevers, and fatigue. After struggling to identify Eli’s rare and aggressive subtype of Lymphoma - Mayo Clinic’s Methodist Hospital admitted him for his first round of chemo in November 2022.

Since then, Eli has cycled through 5 different treatments, searching for one that will get him in to remission. After he reaches remission, the goal is to undergo an allogeneic stem cell transplant (stem cells from a donor), in order to kick this thing for good. Eli’s kind of cancer has a high likelihood of relapse, and a stem cell transplant would give him a better chance of maintaining remission and ultimately reaching “cured” status.

In March 2023, doctors discovered that the cancer had metastasized to his spine - creating microfractures in a handful of vertebra. Eli was admitted to the hospital again, where they proceeded with radiation treatment to halt the deterioration in his spine and began a new type of chemo.

To prevent spinal cord compression or further injuries, Eli has since needed to wear a stabilizing back brace when up and about.

Originally, Eli’s stem cell transplant was planned for April 2023, but with these developments, that plan had to be postponed.

April-June of 2023, Eli was in and out of the hospital every few weeks (including two ambulance rides and 3 ER visits). At this time, in addition to cancer symptoms, Eli was experiencing reactions to the chemo including encephalopathy (inflammation of the brain leading to seizures, confusion, and delirium), low magnesium, and low red blood cell and platelet counts requiring frequent infusions.

The doctors then switched him to immunotherapy (a medication that teaches a patient’s immune system how to identify and destroy cancer cells on its own), to give his body a break from the toxicity of chemo.

Unfortunately, Eli’s cancer symptoms flared during this time (liver lesions leading to jaundice and pain, enlarged heart muscle technically defined as “heart failure”) leading the doctors to prescribe steroids. Steroids are immunosuppressants, so while they aided in calming his cancer symptoms, they also suppressed the effectiveness of the immunotherapy, resulting in further cancer growth in Eli’s pelvis, ribs, bone marrow, lung, and skin. So, for Eli’s 33rd birthday, he was started yet another new chemo cocktail.

Since being released from the hospital at the beginning of July, Eli has been able to stay at home! He’s been gaining weight and strength, in addition to taking up his reading habit again and caring for his porch garden.

A couple weeks ago, a followup brain MRI showed that the encephalopathy from past chemo has passed. Good news!

On the other hand, Eli’s PET scan last week showed a mixed response to his current chemo (some cancer spots have resolved while others have grown), so his care team has changed his treatment plan once again.

So, as of right now, Eli is still doing well enough to avoid a hospital stay. He’s currently adjusting to his new cancer treatment and the pain management that he’s had to step up due to the increased cancer activity in his bones.

It’s been a roller coaster and we’re still learning how to exist with the constant uncertainty. We’re both thankful the pace of life has slowed a bit now that Eli’s been at home for almost 6 weeks. He still visits the clinic 3 times a week for blood tests, monitoring, and any needed infusions, but this schedule feels so much more manageable.

Newest Update

Journal entry by Meagan McAlister — Aug 28, 2023

I started this page after our GoFundMe went around a few weeks ago, thinking I’d be updating everyone about Eli’s progress now that our news was more widely known.

I’m shocked and devastated to share instead that Eli passed away this past Saturday morning, August 26th.

Things changed so incredibly fast this last week. We learned on Tuesday that Eli’s treatment options were at an end - his kidneys were really struggling with the current regimen and there weren’t really any options to move to that he would be able to tolerate. The doctors told us they were handing us off to home hospice care and the palliative care team. They predicted he had weeks left.

We got set up with hospice on Wednesday, and by Thursday the nurse told us he was likely in kidney failure. He was unconscious most of the time, a bit confused, and had trouble communicating. The nurse told us it was a matter of days, maybe a week. By Friday, the nurse said get everyone who wants to see him here now.

And we did. A flood of family and friends rushed to Rochester to sit with him and say their goodbyes. I am so thankful for the time people were able to spend with Eli that day.

We took shifts sitting with Eli all night, and he passed Saturday morning.

It was a brutal few days as circumstances constantly changed and we were trying to mentally keep up. But I am so thankful for the love and care people have shown this year and continue to show us now.

Thank you everyone for everything as Eli’s family, friends, and myself start navigating this next chapter of grieving and honoring him.

Read More of the journal titled "August 28, 2023"

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