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Oct 31, 2018 Latest post:
Nov 22, 2018
This is probably a little bit late, but I finally have a few quiet moments to myself and I'm feeling terrible that I cant keep everyone up-to-date, so here we go...
Things started about 3 weeks ago with Ben waking up in th night with a severe headache and nausea. We thought it might be a migraine. He continued to have severe headaches but insisted he was fine to go both to school and to work and to hang out with friends. He's really not a complainer for the most part. He did mention his headaches and we asked about them every day. His answer was usually "OK" or "eh", but he said he still had them.
We scheduled an appointment with the pediatrician and he was prescribed Tramadol for the pain and Zofran for nausea but a CT was ordered for Friday the 26th to check things out.
On the night before the CT, Ben was having a strong headaches and threw up late that night.
The next morning Ben went in for his scan with Claire and I went to work. At 11 or so Claire called to tell me that they saw a mass in his brain and that they would need an MRI done right away. Needless to say I drove home at high speeds and in shock... which didn't improve when she called me again to tell me that plans had changed and we were told to go directly to Childrens Hospital in Milwaukee.
Claire didnt tell Ben until after I got home. He had been playing video games in the basement. We called him upstairs and broke the news to him and asked him to pack a bag for a few nights in the hospital. He took the news like a soldier (he clearly gets his stoic strength from his mother) and we drove north.
Details later, but here's the skinny on what has transpired since: 1. Told that there was a sizable mass (4 cm x 4 cm x2.5 cm) between his brain stem and his cerebellum in an area called the posterior fossa which was preventing proper drainage and reabsorption of cerebrospinal fluid (CSF). A tube to drain excess fluid would need to be inserted immediately before an MRI could be done. He went into surgery and came back with no headaches, but with a long spaghetti-thin tube coming from a hole in his cranium. 2. He had a 3-hour MRI on his spinal column and his brain. 3. Surgery scheduled for Tuesday the 30th at 7:30. 4. Lots of visits from family and friends 5. Lots of waiting, being scared and not showing it. 6. Surgery day - said our goodbyes a little before 8. Got updated every 1.5 hours on status. All positive. 7. Heard at about 4:45 that he was out and in recovery. Anesthesia was taking its sweet time wearing off. 8. Met with Dr. Kim. She said that the majority of the tumor was easily separated from brain tissue but she chose to leave a small amount of tumor tissue because she was seeing spikes in heart rate when she tried to remove tissue too close to the brainstem. She had called in a colleague to assist her with the resectioning and they both agreed that leaving the amount that they did was the best possible course.