Give Patricia & Moe the Gift of Time

During this time of year, we gather around our family and friends creating memories, laughter, and love. Most of us are not worried about our next meal or if we can keep the lights on while watching our loved ones fight for their life.

Moe is fighting a very rare cancer with very low survival rates. He has undergone 3 rounds of chemo sessions and a stem cell surgery (in less than a year), and unfortunately, the cancer has returned more aggressively than before.

Due to Moe's condition - Patrica is the main contributor to their household financially while taking care of their daughter (who is on the spectrum). She is forced to work and is unable to take family leave as she can not currently make her bills. She has been selling tamales on the side to just keep the lights on.

With the last round of treatment, Moe's condition worsened and they are unsure of the amount of time they will have together.

Below is Patricia and Moe's story.

My name is Patricia Montemayor, my husband is Modesto (Moe) Sepulveda. We have a beautiful 8-year-old daughter Lily. She was diagnosed with autism when she was 2. When Moe came into our lives, he took her in as his own when we became a family in July 2021.

In August 2022, Moe became very ill. It started with a pain in his neck which became a lump that was misdiagnosed as a salivary gland infection, 3 days later we at the ER and he was septic, 2 hours later we were being told he had Lymphoma. Due to the rarity of this cancer, It took a week to discover the type of Lymphoma he had. Let me introduce you to the disease that has taken over my family's lives.

Anaplastic large cell lymphoma (ALCL) is a rare type of non-Hodgkin lymphoma (NHL) and one of the subtypes of T cell lymphoma. ALCL comprises about one percent of all NHLs and approximately 16 percent of all T cell lymphomas. (Lymphoma Research Foundation)

So what does all this mean, and where did my husband stand at the time? I learned way more than I ever wanted to know. As stated above, Anaplastic large-cell lymphoma is a very rare form of cancer. Non-Hodgkin > T cell Lymphoma > ALCL. ALCL affects only 3-5 percent of the WORLD, and as mentioned above, the prognosis has varying factors. My husband was 40, ALCL is common in children and in adults 55+, at his age, this is not as common. He was diagnosed with STAGE 4, The disease had spread throughout his body and that also affected his prognosis. He had a 67% survival rate at the time we found the cancer.

We started high doses of chemotherapy for 3 months at a hospital in Dallas, and in December 2022 he was in remission. We got a second opinion in Houston at MD Anderson traveling every 3 weeks to get scanned, and in March 2023 the scans showed the cancer had returned. This is when we learned that the cancer was not Chemo Sensitive which meant that chemo would get him into remission but would not cure the disease. This lowered the survival rate to 50%.

We were told about a clinical trial that he was able to participate in, and after a complete checkup filled with scans and labs, he was able to start. The clinical trial took place in Houston, but since we have our daughter in a school that she loves, we could not take her out of that routine she needed. In April 2023 we had no other choice than to travel every other week so he could get seen. 1 ½ Months and 2,807 miles later, the scans saw the cancer continued to grow.

The Stem Cell Transplant was introduced to us as our next plan of action if and only if Moe agreed to it. Even though it was not a choice, it was a difficult thing for us to process. He decided the transplant was the way he wanted to go. The timeline was set: 2 more rounds of chemo over the next 4 weeks, and on week 6 was the transplant.

On July 12, 2023 after one of his appointments, my amazing boyfriend at the time asked me to marry him. In a time of fear, pain, and aching, he brought normalcy and happiness into our lives.

We were married on August 18, 2023, just three days shy of his last chemo and 2 weeks before the transplant. After the Ceremony his brother came to us and let us know that he would be the transplant doner. The most common stem cell match they can find in a sibling is 50%, his brother was a 100% match.

This is the most difficult part of our journey, was the transplant. To prepare, he had 3 days in a row of chemotherapy followed by 4 days of 2 (1hr) sessions of full body radiation. The transplant went well the day of, but the symptoms are not something I would ever wish on anyone. My husband stayed in the hospital for 3 ½ long weeks. I stayed home taking Lily to school and making sure she stayed on her routine, while also working full time. I sit here writing this, and still can’t fathom how we got through that time. I got the call that he could come home, and could not get to the hospital fast enough, he was just happy to be coming home.

At 1 am on October 26, Moe had chills, spiked a fever, and pain in his stomach. After a whole night in the ER, he was admitted for appendicitis. Due to his condition, they chose to not surgically remove it to prevent further infection.

The next evening, he started complaining of pain in his neck, and that’s when we realized the lump on his neck was back. After days of CT Scans, ultrasounds, and lots of bloodwork, The doctors confirmed the cancer was back.

That is our story.

We just found out less than a week ago on 11/1, that this rare cancer once again came back. That’s 3 times in a little over a year. During this entire process I have been working full time, I have been putting my full attention to work and taking care of our daughter.

Prior to our last ER visit, there was not one week that I missed a day of work, as this is not an option for us. Moe's disability only pays us 60% of his earnings and runs out in December. He unfortunately does not qualify to be renewed. On the days I visit my husband, I work early, or I stay in and work late to make up my hours. The weekend is the only chance I have to spend time with my husband and daughter, and even then, I try to make cakes to sell or I will stay up making tamales to sell as my pay is not enough to cover my bills.

I am desperate to catch my breath and spend the last moments with my family.

Since the transplant, I have been staring at the calendar appts and at my timesheet, my bills, and rent not knowing how we will make it. Even the day after receiving the latest news about his cancer coming back, I logged into work in fear of not making enough to keep the lights on.