With aching hearts we ask for prayer for our beloved baby as he embarks on a fight against cancer.
Declan was born with a small bump on his back which appeared to be a hemangioma or “strawberry mark”. It grew quickly in his first few months and eventually we were recommended to have it removed, which we did a month ago. After his surgery, we received the devastating news that the tumor they removed was not benign, but was a phenomenally rare form of cancer. Several head-spinning days followed while we were referred to a Pediatric Oncologist and sought additional testing in hopes that this was an isolated event. However, before our initial appointments even took place, Declan developed a swollen lump on his left temple, which has now been confirmed as a second cancerous tumor.
After undergoing every test imaginable, Declan has been diagnosed with Metastatic Malignant Rhabdoid tumors and is in the process of receiving a highly aggressive chemo treatment & stem cell transplant.
Please share this link, mention Declan at your church, add our little one to your prayer chain. The only thing we can do as Declan’s parents is to enlist as many people as possible to pray for our son. Please help us by sharing Declan’s story with every praying person you know.
“I trace the rainbow through the rain, and feel the promise is not vain: that morn shall tearless be!”
-O Love That Will Not Let Me Go
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Many of you have asked for more details. This is a blow by blow of Declan’s story for those who wish to read:
The day Declan was born I saw the bump on his back when they laid him in my arms for the first time. When I was pregnant, I often thought about how many more anxieties I would face once my baby was on the outside, but, we now know that this cancer was growing in him while he was still in my belly.
Declan was born in my hometown. Covid quarantine had shut down the entire film industry in March of 2020, and without work to keep us in Virginia, we wanted to be close to family in the Midwest for our baby’s birth. When I was nine months pregnant, we drove across the country and moved into a lovely rental that my parents own & waited for our baby’s arrival.
It took 40 hours of labor to bring Declan into the world. The few seconds of silence that followed were the longest of my life, until they untangled the cord from around his neck and his little cry told us that our baby was safe. At his initial check with the pediatrician, the spot was noted and marked down as a hemangioma. With each subsequent well-baby check, the spot was inspected, seen to have grown, but still did not seem abnormal. It wasn’t until Declan’s 2 month check that it took on a slightly unusual look and was now growing at a faster rate than normal. His pediatrician told us then that it may need to be removed and to call in right away if it ever started to bleed. The following week, we returned to Virginia for Nate to work on a movie, and we switched pediatricians.
I’ve been a film wife for nearly six years, and I know- only too well -the long hours of filming during a production. Nate and I have bounced back and forth between weeks of uninterrupted time together and long days apart while he was on a project for as long as we’ve been a couple. We knew our unusual dynamic would have perks and challenges when we added a baby to the mix. We cherished every moment of our time together as a family of 3 before Nate went back to work. In the beginning, Declan and I spent many days exploring Richmond together, but, 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. As these episodes increased, it was easier to stay close to home. During a visit with my mom & dad, we scooped Declan out of the tub one night and saw faint blood stains on his tiny bath towel.
I date the beginning of this chapter of my life to that night. We zipped in to the 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. The next morning we took Declan to the dermatologist where he received an exam, an unexpected punch biopsy, and a referral for an ultrasound.
From this point on, the recurring theme of Declan’s tumor has been: we don’t know what it is. Even without a diagnosis, we were strongly recommended to have this mystery bump removed & we scheduled the surgery for August 3rd. Declan came through the general anesthesia and surgical removal like a champ. His bouts of inconsolable crying (which we then realized had been from pain) stopped completely and we all took a sigh of relief that it was over. But one week later, the phone rang and we were told that although Declan’s tumor had still not been identified, the routine check had showed that it was definitely 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 although Declan had had a cancerous tumor, we were 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 permanently to the Midwest to be near family. Nate’s movie wrapped, and we now faced a judgment call of delaying further testing for Declan, bumping up our October move date, or beginning testing with a Pediatric Oncologist in Virginia before our move. We had calls in to doctors in multiple locations 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. On September 8th, 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 bug bite 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 stay in Virginia for immediate treatment, or to transfer to UW Madison the next day. That evening, we packed up our home of six years until the wee small hours of the morning, left for the airport at 3am, and were admitted to UW with our carry-on bags in hand.
The testing during that initial stay led to the diagnosis of Rhabdoid Tumors, which Declan is now undergoing treatment for. Rhabdoid tumors are difficult to treat, have a high rate of recurrence, and often morph to become chemo-resistant.
To give Declan the best odds possible, he is receiving a rarely used chemo plan which includes 3 rounds of chemotherapy, one phenomenally high dose of chemo, and a stem cell transplant.
We were admitted for the super-dose on December 7, and will remain in the hospital 4-5 weeks for the chemo, transplant, and recovery.
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