Elijah

My name is Danielle Speck. In July 2023, Elijah was diagnosed with high risk neuroblastoma. He had a localized tumor in his adrenal gland. When he was first diagnosed, his tumor was over 10 cm big. Due to how sick Elijah was, we took the decision to leave our job for 6 months on FMLA. Elijah went through 5 cycles of chemo, a stem cell harvest, tumor and adrenal removal surgery, 12 rounds of radiation, and 5 cycles of immunotherapy. When he went through chemo, it caused his numbers to drop low and it made him immunocompromised. Due to Elijah being immunocompromised, there was a few cycles where he was admitted to the hopsidal due to dehydration or neutropenic fevers. When Elijah went through immunotherapy, which doesn’t cause your numbers to drop low, we had a plan to start getting ready for life outside of treatment. Our oldest, Noah, is 6 years old and is starting kindergarten. We finished cycle 5 of immunotherapy in June and had a plan of going back to work full time, putting Noah and Matthew in school, and getting ready to start life outside of treatment.

We were getting ready to plan for the ringing of the bell. July 17th, Elijah went in for end of treatment scans. We got the call that night that the mri showed a 4 x 4 mass in the same exact spot his original tumor is in. With Elijah getting a cycle of chemo after his tumor and adrenal gland removal surgery and 12 rounds of radiation in that spot, the cause for relapse in the exact same spot worried the oncologist. When Elijah went for his MIBG scan, it didn’t light up so we were hopeful. August 2nd, we drove to Miami Nicklaus children’s hospital for a pet scan. Unfortunately, we got the results that not only there was a 4 x 4 mass in the same exact spot the original tumor was in, there was also a 5 x 3 x 8 cm mass in his pelvic bone. With the size of the new mass and it metastasizing, the plan was to biopsy the pelvic mass and start aggressive chemo.

Due to Elijah getting chemo again, which is a much more aggressive chemo then he got the first time, his numbers will drop low and cause him to be immunocompromised. We are getting treatment in Miami at Nicklaus children’s hospital. Noah will start kindergarten, which causes more of a chance of germs spreading.

On top of this, Justin will have to continue working through this on the days he’s able to work the days he can.

Once Elijah completes these 2 cycles of chemo, he will get a pet scan to make sure he is responding to the chemo and plan for surgery to remove the remainder of the pelvic mass and the mass in the same spot the original tumor is in.

We will also have to go to Sloan in New York for radiation as the radiation Elijah previously got he’s unable to get again due to the mass’ being in the abdomen again.

We are trying to get the funds to be able to care for our other kids while Elijah is in the hospital the days Justin isn’t able to work, incase we have an emergency and Elijah gets a neutropenic fever and we have to stay at the hospital in between cycles due to the neutropenic fever, and the funds to travel to Sloan for radiation.

With this unexpectedly coming up, we are trying to prepare for the next few months of treatment while also having to care for our other kids - including one that will be in kindergarten.

Thank you for reading our story. Even sharing is extremely helpful. Please hope and pray for Elijah. Thank you.