Daniel was happily running, climbing, and talking up a storm when his family noticed that something wasn't quite right.
The day before they brought him in for evaluation in the emergency room, Danny had regressed to crawling. He was also having trouble keeping his food down. His family brought him in. The team (and his pediatrician) were leaning towards something gastric, with the crawling possibly being from fatigue.
One of the residents felt strongly that they should do a CT scan of his head, "just to rule anything out".
The CT revealed a golf ball sized tumor that was blocking cerebrospinal fluid in the posterior fossa region of the brain.
Danny was brought immediately into surgery to insert a drain for the excess cerebrospinal fluid and his complete tumor resection followed the next morning.
The tumor was sent for testing, and, at nineteen months old, Daniel was diagnosed with AT/RT.
He was started on the Dana Farber protocol and as of his 2nd birthday in November 2021, he has done the initial seven rounds of chemo, followed by a round of high dose chemo and a stem cell transplant. Weeks of radiation, maintenance chemotherapy, and a final doxorubicin therapy still lay ahead of him, but our little hero has been so brave and he has a large group of family and friends behind him.
June 2022 Update:
During a routine spinal tap before continuing on the maintenance portion of the Dana Farber protocol, we discovered tumor cells in his cerebrospinal fluid. They scheduled us for a same-day MRI, which revealed an 8 mm tumor in the original tumor bed. This was unexpected, especially since we have never seen tumor cells in any of his CSF up to now. Daniel was officially relapsed, and we had to stop the chemo mid-cycle and think of a new plan.
We placed an Ommaya port in preparation to start the MEMMAT protocol. Because he is so close to the end of his previous proton beam radiation earlier this year, we will start with the chemo protocol to remove the cancer cells from the CSF and control the current tumor. Once we have some space between radiation dates to reduce the risk of radiation necrosis, we will use radiosurgery to then resect the 8 mm tumor.
November 2022 Update:
Our latest MRI and CSF analysis showed that the tumor has shrunk by half and there are no tumor cells in his CSF.
Unfortunately, that same week, the team diagnosed him with myelodysplastic syndrome, also known as MDS or pre-leukemia.
We think it developed as a result of his cancer treatments. We will add periodic bone marrow aspirates to his treatment to monitor and make sure that it does not progress to leukemia. We have all the paperwork and typing done to perform a bone marrow transplant if needed.
At this time, we will have to keep an eye on both his ATRT and his MDS to keep both monsters at bay.
His next scans are in January and he has his next bone marrow biopsy at the end of November.
Despite all this, Danny had a wonderful 3rd birthday celebrating with his best friend Mickey Mouse in our happy place, Walt Disney World.
January 2023 Update:
The GOOD news is… Daniel's myelodysplastic syndrome was undetectable during our last bone marrow aspirate and his last CSF analysis showed no cancer cells in his spinal fluid.
Unfortunately, the bad news is that Danny’s MRI in January revealed a new 1.5 centimeter mass. (The second mass from November seems to have disappeared.) A follow-up MRI showed that the tumor has grown to 2.5 centimeters.
We have opted not to perform surgery at this time. Due to the way it is growing towards the brain stem and how quickly, we were advised that surgery could lead to deficits that could leave Danny with breathing issues, problems moving his limbs, and mutism that would lead to a long indefinite inpatient stay. We are working with our team on a couple of other options, including a clinical trial and additional radiation.