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Dec 13, 2017 Latest post:
Aug 27, 2018
We'd like to provide some insights to the beginning of this journey.
One of the questions we're often asked about the discovery of Ezra's medullablastoma diagnosis is, how did you know something was off? The short answer: he displayed symptoms of nausea, vomiting, fatigue and an unsteady gait. The lengthier answer takes a bit more time to describe.
Around the end of October, we all had symptoms of the common cold/allergies. When we went trick-or-treating on Halloween, Ezra had some slight symptoms but nothing too extreme. Over the next few weeks, he had a couple of instances of vomiting in the morning when he woke up. Given his cold and apparent sinus drainage, we didn't think much about it. He also never ran a fever. By mid-November, he had some vomiting episodes at daycare and was becoming more fatigued. At this point, he was a little unsteady on his feet but still we were not alarmed. We took him to urgent care and they diagnosed him with a bilateral ear infection, and was prescribed antibiotics. When the symptoms didn't improve, we took him back and they noted that his ears were still infected and one of his eardrums had burst. They prescribed a stronger antibiotic. After a few days, the symptoms did not improve so we took him to our family practitioner. His ears were healthy, so we were concerned it was another type of infection. He was tested for the flu, which was negative. Ezra was prescribe with yet, another stronger antibiotic. We thought he had a sinus infection that would not easily respond to antibiotics. After a few more days, we took him to the emergency room because he was not eating and was still throwing up. At this visit, they noticed he was constipated and they treated and sent us home. Over that weekend, November 20-21st, Jaime became concerned that something neurologically could be amiss. The relieved constipation did not remove the symptoms, and neither did the several rounds of antibiotics for his ear infections. I assured her it wasn't a tumor but her anxiety was still sky-high.
When Ezra was 16 months old, he suffered a 45 minute seizure. The medical team never could determine the cause for the seizure, but diagnosed it as a complex febrile seizure. The scan at that time was clear and there were no brain tumors. It's been confirmed that his current diagnosis had nothing to do with this seizure. Since that time, we have been constantly on edge monitoring his development. So when Jaime suggested that his current symptoms could be something neurological, I did not want to believe her but I felt she could be right
Monday, November 19th, I (Matt) stayed home with Ezra. The previous week, he was very lethargic at daycare and would spend most of his day laying down and watching the other kids. Anyone who knows Ezra, knows that he's not one to remain in one spot for long. That morning, he woke up and vomited continuously. His gait was really off at this point as well. I called Jaime and told her I was taking him back to the emergency room. I was concerned something serious was wrong.
The doctor at the ER recommended an MRI, mostly due to his unsteady gait and many unproductive trips to the urgent care/ER/ and family doctor. The doctor said he wanted to rule out brain tumors. This immediately heightened our anxiety. We were admitted to Children's Mercy downtown. We met with the medical team on Tuesday and they debated if an MRI was necessary. Ezra seemed to improve, and was no longer throwing up. Jaime spoke up and insisted on an MRI.....I credit her motherly instincts. The team met with neurology and agreed to do the MRI, though they didn't think they would find anything. Given his seizure history, we ponder if that was considered in this decision.
The MRI took twice as long as it we were told it would, which was our first clue that something was wrong. After the MRI, we were briefed that Ezra had a mass under his cerebellum. The neurosurgeon informed us it was either a medullablastoma, or an ependymoblastoma. Both are aggressive, both would require surgery and later chemo treatments. The ependymoblastoma is more unresponsive to chemo treatments. Initially, they believed it was an ependymoblastoma. We were prepped that they would be aggressive during the surgery to remove as much of the tumor as possible. The tumor was located near nerves (that could easily damage) that controls breathing, eating, and speech.
In being a holiday week, the neurosurgeon wanted to wait to perform the surgery till that Friday. For then he would have his best staff available. The three day wait was both a blessing and a trying time. On one hand, not knowing what the outcomes of the surgery would be and it's impact, we were soaking in as much time watching our boy move, eat, and breathe normally. On the other hand, we wanted the cancerous tumor removed asap. Our prayers, and pleading with the Lord were joined with many others as we waited.
As it turned out, the neurosurgeon was able to remove the entire tumor! The tumor was sitting just above the nerves, of which none were apparently harmed. This means his speech, breathing, and eating abilities would not be hindered as we feared. What's more, the initial pathology report indicated it was the medullablastoma!!! Which means any remaining tumor cells would respond to treatment!
The course of treatment consists of 6 chemo treatments. Each lasting for about one week each, with several weeks in between for recovery, of which the last three will the "heavy-duty" chemo. To help his body bounce back during those last three treatments, he will receive his own stem cells.