MARYJEANSL
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New Danny Update

Sunday, June 16, 2019

I am still not doing a particularly good job at updating people about Danny. However, I am doing better than I had been, so I am giving myself at least a little credit.

I left off the last blog (May 18th) with Danny getting one steroid pill per day (down from four), and steadily improving, to the point where he could attend the school sports banquet. His balance wasn't great, and he was very slow going up and down the stairs, but, in comparison to how he had been, he was doing amazingly well.

His oncologist had ordered two cycles of chemo, with an MRI after the second cycle. The MRI was scheduled for Monday, June 3rd. We knew it would show significant improvement from the last one; we just didn't know how much. (Recap - first MRI, after unexpected seizure at school, showed disease in the covering of the brain and spine. Second MRI, only two weeks later, with no treatment, showed significant increase in disease burden.)

The MRI showed that the cancer was essentially gone from his brain and spine. Exclamation point! Gone. No one would have predicted that. I think it was a full-on miracle. To quote from the report about the spine, "Significant response to therapy. The previously described spinal leptomeningeal metastatic disease is no longer evident on this study." And
about the brain "Significant response to therapy with near complete resolution of cortical and leptomeningeal disease."

Of course I cried. We have Danny back. Although, honestly, we don't know for how long. I want so much to believe that this has been a total healing, and that the cancer will never come back again. But there is no way, right now, to know this. The other option, and certainly the one which his oncologist believes, is that he has had an amazing and unexpected response to chemotherapy, but not a miracle cure.

If option number two is correct, then we need to know what to do, to at least try to keep the cancer from coming back. For right now, Dr. Whiteway wants to do two more cycles of the same chemo. This coming week is week four in the third out of four cycles that she has ordered. After the fourth cycle, he will have another MRI, and I presume that we will then discuss what to do next.

A clinical trial is once again at least on the table, given how well he is doing. Danny's insurance has approved his going to Houston to speak to a researcher there who is running a couple of trials he is probably eligible for. However, Dr. W said that there isn't a researcher out there who would recommend a trial right now over the excellent response to chemo he is showing. So going to Houston will mostly be to get our foot in the door, as it were, get to know them, and them, us, and talk about the possibility of the trial if and when we stop the chemo. I should add that Danny continues to tolerate the chemo very well, with his blood counts remaining high.

In other news, he has said over and over that he wants to go back to his school where his friends are, and he wants to graduate with them. The problem with that is that he has missed the entire fourth quarter. We spoke with the administration, and were told that, if he wanted, they would ask his teachers to make up packets of work for him to finish over the summer to complete the fourth quarter. Danny was supposed to let them know. He did nothing. Time has passed. By now many, if not most, of the teachers have left for the summer. None of them are going to work as teachers again until school starts in August. In other words, it is very unlikely that those packets of work are going to happen at all now.

And I haven't even been able to get Danny to do any of his Algebra II, which is laid out very neatly, lesson by lesson, and is the one subject he wouldn't really need the teacher's help to finish. But he won't do it. He just gets mad and tells me to stop nagging him.

So I don't think he will be able to go back in August for his senior year, even if his health continues to be as good as it is now. He just isn't able to motivate himself to catch up. I do plan to call the dean tomorrow and at least ask. But, you know, it is a *wonderful* problem to have, in comparison to thinking he was going to die in a matter of weeks if not days. It will upset Danny much more than it will me if he can't go back.
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Member Comments About This Blog Post
  • JANIEWWJD
    I am so happy that Danny is showing improvement!!! emoticon I will continue daily prayer for him!!! emoticon
    122 days ago
  • BLITZEN44
    I am SO glad to hear about Danny's vastly improved health! A miracle for sure! Can't say I blame him for not wanting to do homework...I didn't either when I was his age. ;) Since you are already an experienced home schooler, can you homeschool him to catch him up with the quarter he missed over the summer? In this state you have to be plugged into a program and sign up for it in advance to home school, but perhaps given the circumstances they would allow you to sign up late? Not sure, just a thought.

    The important thing is that you have him back and he's doing so well on the health front. I hope you're able to go talk to the researchers just to have a back up plan and to get your foot in the door if needed for anything that might happen down the line. Always good to have an extra safety net in place if it's available.

    Again so glad to hear your good news! emoticon
    124 days ago
  • SLIMMERJESSE
    This is amazing! Such wonderful news. As far as his course work, is there any way he can take different subjects to graduate? Maybe ones he's enjoy more.
    124 days ago
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