Declan Fighting Cancer

Declan is three years old and has been fighting an incredibly rare, extremely aggressive cancer since 2021 (Rhabdoid tumors). All funds raised here will go directly toward the care that Declan needs.

To all of our friends and supporters of Declan’s journey over the past 3 years - we are so thankful for the generous support of Declan’s initial diagnoses! As Declan and his parents face a new, cancerous brain tumor (discovered in April 2024) and an extensive treatment plan over the next six months, the Sissons need not only prayer, but financial support. Because of the nature of Declan’s treatment, Megan and Nate are not able to return to work at this point because of frequent hospital stays and needing to quarantine for extensive periods of time. With a child with recurring cancer diagnoses, they face an incredible load of daily care for Declan as well as many medical and non-medical expenses. Please read below and/or follow his Caring Bridge to see details of Declan’s story and current treatment plan. We are so thankful for every prayer and financial gift given for this little warrior!

 

 

Read Declan's story from his parents below:

The day Declan was born I saw the bump on his back when they laid him in my arms for the first time. At birth, it was labeled a hemangioma. Declan was a delightfully happy baby and gave us no cause for concern in his early days. At every well-baby check, the spot was inspected, seen to have grown, but still did not seem abnormal. It wasn’t until Declan’s two month check that the bump took on a slightly unusual look and was now growing at a faster rate than normal. Our pediatrician told us that it may need to be removed at some point, and to call in if it ever started bleeding.

Around three months old, our laid-back, sweet tempered baby began having some high stress screaming episodes that would come out of nowhere and were absolutely impossible to console. Then one night, we scooped Declan out of the tub and saw faint blood stains on his tiny bath towel.

I date the beginning of this chapter to that night. We zipped in to see a new pediatrician in the morning who took one look at Declan’s “hemangioma” and said, “you need to see a dermatologist immediately” and sent us home with an appointment for the following day.

From this point on, the recurring theme of Declan’s case was: we don’t know what it is. Even without a diagnosis, the dermatologist strongly recommended to have this mystery bump removed & we scheduled the surgery right away. Declan came through the general anesthesia and surgical removal like a champ. His bouts of inconsolable crying stopped completely and we all took a sigh of relief that it was over. However, a week later, the phone rang and we were told that although Declan’s tumor had still not been identified, the routine biopsy had unexpectedly shown that it was malignant and that he would need immediate follow-up testing.

Nothing could ever prepare you for hearing this kind of news about your child, but, we did have the softening factor of hope that this tumor was an isolated event. Hope, that perhaps the cancer was contained to the one spot, and we were simply finding out about it after the fact. Hope, that the entire chapter was over before we’d even known it had started.

These were long days. We had decided long before Declan’s surgery that we wanted to relocate to the Midwest to be near family. Our move was planned for several months down the road and we now faced a judgment call of delaying further testing for Declan, bumping up our move date, or staying at our home in Virginia for treatment. We had calls in to doctors in both Virginia & Wisconsin asking for their earliest appointments, and we were beginning to pack, just in case.

Small, incremental changes are easy to miss when you spend all of your time together. About two weeks later, we looked down at Declan and realized that his left temple had grown a swollen lump. An allergic reaction, we thought. A bug bite, possibly. A look through our most recent photos quickly showed us that this lump had been slowly growing without our notice over the course of the previous 4-5 days. We made an appointment with our pediatrician for the next morning with growing dread in our hearts, still hoping against hope that this would be some sort of bite or reaction. I have never felt less adequate as a mother and a human than when I held my baby in my arms and rubbed Cortizone onto the swollen temple of an infant who had already grown one malignant tumor.

Given Declan’s history, things moved quickly from this point. Our case was expedited as an emergency, and we were scooted into VCU Oncology for a CT scan which showed a small mass in Declan’s temple. Our choices were to begin immediate treatment at VCU, or to transfer to UW Madison the next day. That evening, we packed up our home of six years into the wee small hours of the morning, left for the airport at 3am, and were admitted to UW the next morning with our carry-on bags in hand.

Testing during our initial stay led to the diagnosis of Malignant Rhabdoid Tumors- an exceedingly rare, difficult to treat cancer with a high rate of recurrence and very poor prognosis. Our Pediatric Oncologist quickly came up with an aggressive chemotherapy plan. Declan received 3 cycles of chemo, spent 5 weeks in the hospital for one phenomenally high dose of chemotherapy followed by a stem cell transplant, and then had six weeks of radiation.

Our brave boy endured the brutal treatment program with all of the sweetness & spunk that he has become known for. He was supported in prayer by family, friends, and his incredible Support Squad through all of the painful side-effects and his hospital room was filled with a deluge of paper hearts and messages of love & support that arrived in the mail.

Declan was pronounced in remission in March of 2022 and spent six beautiful months recovering from the trauma of treatment and experiencing the joys of normal childhood. I am haunted by the moment when, in late Autumn, I slid my hands around Declan’s chubby little arms and felt a new, hard lump.

Exams showed a mass, and a biopsy confirmed our greatest fear: it was another Rhabdoid tumor. Rhabdoid tumors are known not only for their aggressive growth, but also for the fact that they very rarely respond to chemotherapy a second time. We joined a clinical trial at the University of Indiana with great hopes, but within six weeks Declan suffered a terrifying seizure and had to be removed from the trial.

Declan’s doctor went back to the drawing board and collaborated with top pediatric oncologists across the country to come up with an innovative treatment plan for him including monoclonal antibodies + a tumor suppression medication. To our complete shock, our insurance company deemed the medications “too experimental” and denied Declan care, despite the fact that other chemotherapies are well-known to be ineffective against a Rhabdoid recurrence.

After a lengthy process, (and two rounds of chemo while we waited for our case to be processed) our insurance appeal was successful and Declan began immunotherapy. To our joy, Declan’s tumor responded immediately to this experimental treatment, and for nine months, his tumor was held at bay while he was free to enjoy a fairly normal, stable life. In January of 2024, the tumor began to grow again and we scheduled a surgery for a complete resection, which was successful. Our hope was that the surgery (combined with another year of immunotherapy treatments) would put Declan into a full remission. However, just days after his surgery, he became symptomatic with unexplained nausea & vomiting, and shortly after, we discovered a brand new tumor in his brain.

Over the next six months, Declan will undergo two rounds of high-dose chemotherapy, brain surgery, three bone marrow transplants, and radiation. We expect to spend four or more months in the hospital for Declan to receive these treatments and recover.

Despite everything that life has thrown at Declan in his three short years, he remains a brave, plucky, resilient little warrior with a sweet spirit, boundless energy, and a delightful sense of humor. Although the road ahead looks difficult & daunting, we do not take for granted the gift of continuing to fight for our son, with hope for a permanent cure.

For daily updates & prayer requests, sign up for email or text notifications on Declan’s CaringBridge. We appreciate our Support Squad more than we can say.

https://www.caringbridge.org/visit/declansdailydigest