The following post is, as titled, two aspects of life with a terminally ill (diagnosed) child. The first is simple…to a degree. Here is how Rachel put it yesterday…(you may have already read this).
For this clinical trial, one of the parameters was that the tumor(s) could not show more than 20% growth…which for Trey translates into about 1 1/2 – 2 cm. Each time he had a CT scan, there was minimal growth, like 2 mm, which was well within the study’s parameters. Today scan was the same…MINIMAL GROWTH, mere millimeters, nothing to get up in arms about.
However! Collectively, adding up all of his CT scans, including today’s, put him over the 20% mark. He is no longer qualified for this research study.
Next Thursday, the Tumor Board (which, isn’t that an awful name for a group??) will discuss Trey’s case and pick out different studies that he would qualify for. We have a meeting with the doctor’s on October 24 to talk about the options.
Trey’s blood work is perfect, he’s not symptomatic in any way, and is still full of endless energy!! Plus, this study would have rejected his ear tube surgery because it is considered “elective”, so now he’s clear to get that surgery!
On the other hand, tumor growth of any size, no matter how small, is still discouraging. And, he has done so well on this study and it worked so well for him/us schedule wise. Nobody likes change and we have NO idea what lies ahead.
The trial that he was on was intended to keep the tumor(s) from growing and for the most part it did. It is a trial so the only way he could get this medicine (from a FDA perspective) is within the parameters of the study. He now falls outside of that. This is why they can’t just keep giving him the meds until something else comes along. It is our belief that the prayers of all of you have done as much to keep the cancer at bay as the meds have. Thus, you keep praying and we will be fine.
NOW, the real life update. I would like to describe for you one…just one of the ways that our YoungWarrior makes life quite maddening around here. He has learned, through another child at pre-school, the term “Oh my God.” This not of the worship sense but as an exclamation. We quickly told him not to say that and replace it with “Oh my goodness, oh my word, oh my Baker (his new babysitter…his choice of substitute name), oh my anything…just not God.” So, he quickly took it as us saying to him, “If you need or want attention or simply to push our buttons go ahead and say, “Oh my God!” over and over again.
Well, we are smarter than a 5 year old and continued to redirect said choice of words. Last Sunday, he told us that we were going to go “somewhere nice.” We let him know in no uncertain terms that, in fact, we were not. It wasn’t in the plans, we had other plans, and that we would not be going “somewhere nice” on that day. He ignored us and kept saying it. Then, after the 20th “Oh my God!” of the day I made the mistake of saying, “Little boys who say that don’t ever get to go somewhere nice.” So now, here’s how he plays that redirection.
For the rest of that day he would routinely say, “Oh my God!” and then after pausing for about 1 second, “I WANT TO GO SOMEWHERE NICE!” All of this before Rachel or I could say anything. Allow me to summarize. He knowingly says something that he is not allowed to say. He then shouts about his desire to not be punished by us taking away a fictitious trip…that he created in the first place!
Soooo…we then came up with the wise sage plan of………? Ignoring it. Yes, when a child demonstrates an attention seeking behavior you ignore it and fill the need when he is not. Problem solved.
You’d like to think so wouldn’t you? No, no, not with our YoungWarrior. As if he isn’t wise to our foolish attempts to modify his madness. What does he do? Well….yesterday morning I woke him for his trip to the hospital and CT scan. His first words? “Morning daddy, Oh my God and oh my goodness.”