Journal entry by Melinda Johnson —
Thursday March 5th wasn't any easier than the day prior. We had an answer, a cause to everything that Drake had been going through for months, and I remember saying "Knowing what has been causing this doesn't give me any relief at all because of what it is." The opposite happened, which I am assuming is pretty par for the course. High doses of steroids were started the prior evening. The catheter was removed at some point, but not without monitoring his bladder/output very closely. Which meant that every 4 to 6 hours someone would come in and scan his bladder, and if he had anything over a certain amount left after voiding, he would have to be cathed again. You can imagine the anxiety that creates for a 12 year old boy. This was something that was ongoing throughout 80% of our stay there.
At this point, Drake was up walking small distances with his walker around the hospital room. Just seemed like his balance was a little off. His neurosurgeon, Dr. Mangano, came and spoke with us after looking at his imaging and decided Drake's case was emergent enough to clear his schedule for the following day so that Drake was his only case. He explained risks and how he planned to do the procedure, with hope that no more loss of function would occur, but because we didn't know what we were dealing with his top priority was complete removal of the tumor. So, I signed the consents to move forward.
We also met with his oncologist, Dr. Hummel, just to get acquainted. He informed us of what testing would be done to determine type of tumor and basically we would move forward once we knew more. Not a man we ever thought we would be speaking with. That's how life works, plans are very fluid.
Gavin and Trent came up that evening, we had kept them informed of everything that had went on the day prior and the news we had gotten to the best of our ability. Gav and Drake played xbox while Trent watched youtube, business as usual. It was hard not having a date of when we would all be home again together, and while COVID was on our radar, nothing had been closed and no orders were in place. Watching my boys say bye to each other that evening was awful.
At this point, Drake was up walking small distances with his walker around the hospital room. Just seemed like his balance was a little off. His neurosurgeon, Dr. Mangano, came and spoke with us after looking at his imaging and decided Drake's case was emergent enough to clear his schedule for the following day so that Drake was his only case. He explained risks and how he planned to do the procedure, with hope that no more loss of function would occur, but because we didn't know what we were dealing with his top priority was complete removal of the tumor. So, I signed the consents to move forward.
We also met with his oncologist, Dr. Hummel, just to get acquainted. He informed us of what testing would be done to determine type of tumor and basically we would move forward once we knew more. Not a man we ever thought we would be speaking with. That's how life works, plans are very fluid.
Gavin and Trent came up that evening, we had kept them informed of everything that had went on the day prior and the news we had gotten to the best of our ability. Gav and Drake played xbox while Trent watched youtube, business as usual. It was hard not having a date of when we would all be home again together, and while COVID was on our radar, nothing had been closed and no orders were in place. Watching my boys say bye to each other that evening was awful.
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