We've had an eventful, very exhausting and scary few days. Last weekend, Mike began experiencing uncontrollable vomiting. He couldn’t keep any food, medication or liquids down for days. We were becoming increasingly concerned of dehydration and of course, why this was happening to begin with. On the 15th, we drove to the ER in hopes to get him some immediate relief and *wishful thinking* a same-day MRI. We got the first accomplished. Mike was given fluids and Zofran through IV – which is much more effective and fast-acting than taking it orally, which he already does daily. Unfortunately, the hospital staff couldn’t schedule him for an MRI that day, so once he began feeling better from the IV, he came home. His next MRI was already moved up from March 20- something to February 17th due to this sudden change in symptoms but waiting 2 more days still felt like waiting a lifetime. ANY change in symptoms gives us knots in our stomachs. On the 16th the nausea and vomiting returned and Mike spent most of the day back and forth between the bathroom and our bed. On the 17th, Mike was scheduled for his MRI, but to no surprise, woke up feeling sick. He was headed to the bathroom that morning as I took the boys down for breakfast. About 45 minutes later, Mike called me upstairs.
I walked into the room and from our bed Mike asked “What happened?” he said “I was in the bathroom and I don’t know what happened.” I was confused. I got in the bed next to him and it didn’t take long to realize that something was very wrong. He didn’t know the time, day, nor place. He was struggling to speak at all.
My gut told me that in the 30-40 minutes that I was downstairs, he had a seizure in the bathroom. My mother in law walked in at the exact same time that I was coming down the stairs. I called 911 and Mike and I took our first ambulance ride over to the hospital. Not a “first” together worth celebrating.
Obviously at that moment, my concern was Mike. However, the thought of our 3-year-old son witnessing me run back downstairs in tears to call 911 left me with unbearable knots in my stomach – on top of the ones created by this situation to begin with. I couldn’t help but wonder what impact this was having on him. How much does he understand? We learned early on the importance of being open with our kids– despite how young they are. Occasionally, I use the words tumor and cancer around them, even though I still have trouble getting those words out myself. “I have to go give daddy his tumor medicine” or “daddy’s cancer medicine is making him feel sick” or “daddy and I are going to see his tumor doctor today.” We’ve been taught and so believe that sharing age-appropriate information will allow them to learn and ask questions as they grow. It feels like it somewhat normalizes these absolutely horrible and abnormal words; though, my innate urge to protect them from all of this and just preserve their innocence is intense. I know they understand more than we think and I never want them to feel worried or unsafe. I felt like Dante felt my panic that morning and it was so unsettling. Thankfully, him and Dominic were having a blast at home and he seemed to move on from the moment, despite it sticking with me all day long.
Anyway, we arrived at the ER and the testing quickly began. Mike spent 4 days in the hospital while getting just about every test available – cat scan, MRI, short and long EEG, another MRI, and various labs. The MRI took a few attempts over the course of his stay because in his condition, he couldn’t follow commands or stay still long enough for the test to be done correctly. He was agitated and confused – unable to understand me and unable to communicate himself. What he wanted to say was not matching the words that were coming out of his mouth. He fought the sedatives hard and this complicated things more.
Those first two days in the hospital were honestly terrifying. Nobody knew why Mike was acting this way. We thought it was extreme dehydration but after hours of getting pumped with fluids and no improvement, we knew it was something more. The possibilities at this point were ongoing mini seizures, tumor growth, stroke, infection, or medication toxicity. Of course, tumor growth and stroke were our biggest concerns – both of which, after more evaluation, were able to be ruled out. This was the BEST NEWS! In fact, his MRI looked the same as January – virtually no active cancer.
Infection was ruled out next and an EEG showed no present seizure activity. This isn’t to say that he didn’t experience one at home; in fact, it’s believed that he probably did. The theory is that some combination of these things happened. We think Mike had a reaction to the infusion that he got on Monday, leading to vomiting, then to dehydration/lack of medication absorption which provoked a seizure, resulting in the altered mental state. In an “injured” brain, seizure recovery can take a lot longer than it might in a healthy brain.
Saturday, Mike woke up much more himself. I came home Friday night with the kids while his dad stayed over at the hospital. Mike called me Saturday morning and my heart literally exploded out of my chest. I was so freakin’ thrilled to hear him talking (and making sense). Outside of some short term memory loss and dysfunction using his phone, the change overnight was remarkable.
Sunday, even better.
Despite how scary, we were able to laugh over some of the things he said while coming out of this. I would never share publicly- but I can at least confirm that his love for pizza is unwavering.
He was discharged Sunday with a new medication and some new strategies for nausea management. We met a wonderful Oncologist in the hospital who happens to have a practice right down the street from us. He's now a part of the team and Mike will visit him for fluids a few times a week. We’re hopeful and determined to find a way to improve his constant discomfort. We’ll get there.
It is GOOD to have him home!
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