On July 8, 2020 we welcomed our second child, a healthy baby boy into this crazy world. When we first found out we were expecting we had no clue that a global pandemic would begin 5 months into the pregnancy. This came to be somewhat of a blessing as it allowed us to spend some quality time with our daughter before she became a big sister.
We held out hope that this would all be over by the time he was born, but unfortunately it only got worse. By the time he was born our area was having record-breaking cases and hospitalizations and the hospitals had changed their visitation policies to no longer allow anyone but my husband and I to be there. Nevertheless, we were still blessed with a seemingly perfect and healthy baby boy we named Dakota!
Things were going great and he was meeting his milestones and even surpassing some for his age. Right before Dakota turned 3 months old we started noticing a slight twitch in his eyes when he would look to the side and he seemed to be having a hard time holding his head up. He had also began vomiting in the morning after his first feed of the day, which we thought at the time was due to congestion that he was experiencing. We took him in to the pediatrician for a weight check and brought up our concerns and we were referred to a neurologist to perform an EEG because they were thinking he might be having micro-seizures.
Two days later, the day he turned 3 months old, we took him in for the testing and the neurologist came in to go over what he saw on the scan, which was great news because he wasn't seeing anything irregular. But he went on to assess him and that's when he became really concerned, Dakota's fontanelle was not soft and when he moved his hand towards his face he was not reacting as he should. He sent us to the ER immediately for an MRI and that is when our world came crashing down around us.
When we arrived they sent him back for a CT scan which was showing a blockage that wasn't allowing his cerebral spinal fluid to drain like it should. They called in the neurosurgeon to come speak with us and she performed surgery to put in an external shunt to start relieving the pressure and did an MRI which confirmed there was a tumor at the base of his brain. She told us that it was very likely that he had ATRT but couldn't confirm until they got in to perform surgery to remove the tumor and send it off for pathology.
The next day he underwent surgery and they were able to remove 80% of the tumor but noticed that it looked like it was starting to sugarcoat the spine, which was later confirmed by another MRI. He spent 19 days in the PICU and during that time it was confirmed that he had ATRT. His chemotherapy began just two weeks after he was first admitted. He is currently finishing up his first cycle of what will be a total of 3 before beginning high-dose chemo with stem cell rescue as long as things go well and the tumor responds.
We pray everyday that he may be a survivor of this beast, and are trying our hardest to never lose hope.
Follow Dakota’s Journey: Dakota's Fight Against ATRT