On February 25th, our amazing pediatrician agreed to see our son after hours in her clinic due to some motor regression concerns that we thought we'd observed. From that visit, we were directly admitted to the local hospital for a scheduled MRI the next morning. The MRI the next day revealed severe hydrocephalus (excess fluid on the brain) and a "significant" brain tumor wedged in between his cerebellum and brain stem. Our son was then taken up to Portland to Doernbecher Children's Hospital to have brain surgery the next day. We met with the neurosurgeons the night we got to Doernbecher, and they informed us of all the "risks" with his tumor. It was overwhelming to say the least. Surgery took just over 6 hours and was successful, in that, the neurosurgeon was able to completely remove the tumor (which we would later find out that with this type of cancer does not happen). Then the process of healing and waiting for biopsy results began. Healing seemed to be going alright, but Ari was suffering from something called Posterior Fossa Syndrome (click here for more reading) which we had been informed may be a possibility based on his tumor being in the posterior fossa area of the brain. We were moved out of the PICU on Sunday evening after Thursday surgery with hope of going home before more "treatment". On that Sunday evening, Ari began having post-operative seizures that became worse as the night went on. They progressed to something called status epilepticus, basically meaning that the seizures would not stop. That was the night we almost lost our son due to him not being able to breathe during the seizures. We were rushed back to the PICU where we spent the next week while they tried to figure out his seizure medication(s). It was during that week that we found out the diagnosis of AT/RT (atypical teratoid rhabdoid tumor). After days and more tests, they felt they found the best "combination" of medications; however, they were unsure whether Ari would "wake up" from his current mostly-non-responsive state. Well, he did!
We were moved up to the intermediate floor once again and guess which room they placed us in. That's right; they placed us in the exact same room that we were in when he began having seizures. Talk about an unsettling feeling. Luckily, it went much better. Another week of trying to figure out feeding, medications, and treatment plans left us still in the hospital for the start of chemotherapy. Week one went "as good as expected" according to the oncology team, but any parent would not feel it went that well when they have to watch their child vomit repeatedly throughout the week. We were scheduled to go home that Saturday, but Mr. Ari decided he would yank his feeding tube out which kept us in the hospital through the next round of chemotherapy. We were actually excited that he grabbed and pulled it out because he was more purposefully moving his arms which he had not done previously. The next round of chemo was not as intense and we were able to go home the night after they administered it. Home was stressful. Home was hard. Home didn't feel like home anymore. Ari developed a fever on the Thursday after we left the hospital on Monday and we found ourselves back in Portland at Doernbecher due to him being neutropenic. Today we sit in the hospital praying for his white blood cell counts to increase to a safe level.
Obviously, there are so many more details to this story that would take me much longer than this already-long post to type out. I wanted to type an initial post briefly (ha!) mapping out our journey so far. We wanted to also thank you all for your continued prayers for healing for Ari and strength for our family.
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