Page 18 - Relapse

2 Early Signs of Relapse
has not returned. He has six more months to wait for the next MRI (Magnetic Resonance Imaging) of his brain and spine. This is the first time he has had to wait for a year before having an MRI. I think to myself, “I know things happen for a reason and I really want them to take a look.”
When we arrive home, I call the after-hours emergency line for Dustin’s oncologists and speak with them. They again say to keep an eye on him and that he should be fine. I ask again if we could take a look anyway, as the timing for the MRI is too far out for my comfort. He tells me, “Emily, he is five years out from his last chemotherapy treatment, it’s not necessary. He will have his MRI on June 1st 2009 unless there are any problems.”
Christmas morning arrives, it is just beautiful. Corey and Kerry are in, Dustin is home from college, and Phil and I are ready to spend time with everyone. We have the traditional roast with carrots, potatoes, onions and peas; broccoli on the side with fruit and homemade bread, pies and cookies; tea, coffee, wine, beer. We are set for a celebration, and that we have – we have the best Christmas yet! We play cards until after midnight and film Phil, Corey and Dustin putting together a bar-be-cue pit. That in itself is amusement. Captured on film, you can really see who’s in charge, who’s working, and who’s full of suggestions.
But during that day Dustin remarks, quite prominently, “Huh, my feet are warm. For the first time in five years I can feel my feet, and my toe doesn’t seem to be dropped as much.” Suddenly, my heart feels heavy and I don’t like what I am hearing; any change at all could mean that his cancer has returned.
Dustin had taken a drug called Vincristine in 2002, one of many (but we will get to that later). Some of the drug’s side effects are neuropathy, coldness, paralysis etc..., Dustin had all of these; as a matter of fact, he couldn’t take the last dose he was scheduled for in 2002 because the paralysis had partially consumed his feet. It would have increased and not been reversible, so the drug was stopped.
When Dustin remarks about his feet, you could hear a pin drop. Everyone stops what they are doing, all of the attention is on Dustin, and the questions fly. Dustin says, “The doctors did say that I might at some time in my life regain everything that I had lost, not likely, but it could happen. I consider this a bonus for Christmas.” We all agree and go on with our holiday. I, however, sitting in the bath late that night, pray that his cancer has not returned.
When the holidays are over, we report the warm feet incident to his oncologists. Their response is that they are so glad to hear that his feet are warm finally and that he is going to be one of the few lucky ones who regain some feeling back and that hopefully all of his paralysis also will improve. Again I ask, “Shouldn’t you take a look at him?” Again their response is no; unless he starts displaying other problems, such as being off balance, gait disturbances, trouble concentrating, nausea, can’t eat at all, memory problems, ...
I respond, “He has all of the problems you just mentioned, due to the brain surgery to remove the initial tumor, which in turn, left him with double vision that moves all of the time, which in turn, makes him off balance, nauseated, gait disturbances, and he has had memory lapses and trouble concentrating etc..., since the surgery. How are we able to tell the difference? The doctors still insist on waiting until June for the MRI.
Around February 2009, Dustin is staying with Corey for the weekend. Corey notices that Dustin is having more trouble than usual walking down the hallway in his house, that he sounds like a bouncing ping-pong ball, and that I should probably call the doctor. I do just that and again the doctor wants to wait until June.
The unfortunate thing about Dustin’s case is that all of these things that we keep reporting to the doctors are not consistent and happen very randomly. As Dustin’s mother, I feel