Tighe - a big week ahead.

This is an update on how things are going with Tighe. There's another post below from Gigi earlier this evening with lots of photos and an update on what's been going on with the rest of the family.

It's dififcult to know where to start, it being such a long time since the last update. Overall things are going really well and I have some great news to share about Tighe. There's still a ways to go, but relative to early December, we are in a much much better place now and with a prognosis I'd have given an arm and a leg for at the time of his diagnosis. This is a big week for Tighe. But before I go there, let me catch everyone up on what has been happening. Tighe completed his sixth round of chemotherapy in early April. and later that month he had another MRI scan. The results were very positive overall. The drugs, in parallel with Tighe's fighting spirit, have reduced the tumor by 94%. As Dr. Twist confirmed, this really is excellent progress. The remaining tumor is still however partially in his lower spinal column. Although this is obviously not ideal, it is not as bad as it sounds. I'll explain a little more below. So, the next bit of really good news is that Tighe is done with chemotherapy. Gigi and I were thrilled about that. To say these drugs were ravaging his body may be overstating it a little, but the difference in his physical development relative to his brothers was becoming more noticeable. Dr. Twist felt that Tighe had reached a point of diminishing returns with the chemo, so it is time to move on to the next (and hopefully final) phase of his treatment i.e. surgery to remove what's left of the tumor, at least that part that can be accessed with relatively low risk surgery.

So, this coming Friday, May 8th, Tighe will undergo surgery. We spoke to the surgeon (Dr. Karl Sylvester) last Wednesday and he explained what will be happening. He will cut Tighe open from just below his belly button, downwards toward his pubis. They'll push to the side his intestines and anything else that's between the incision and the lower sacrum/coccyx where the tumor is located. They will cut away and seal off the blood vessels connected to the tumor and basically remove as much of it as possible. He estimated it would take somewhere between 2-4 hours. They will not attempt to remove what is left in his lower spinal column. To remove this would mean entering from the lower back, cutting bones and working right up against critical nerve endings, a surgery that carrys far greater risk than just leaving what remains there. Now, here's a critical point to note, their experience with this type of tumor tells them that if chemotherapy has reduced it by 94%, there's a very high likelihood (greater than 90%) that what remains is what they call scar tissue, basically dead benign matter that will not grow again. They will be able to confirm this by examining what they remove from Tighe on Friday. If they do determine that the biological make-up of what remains is scar tissue and unlikely to grow again, they will simply monitor Tighe (via MRI scans) over the next two years. If after two years the remaining tissue either hasn't grown, or better still has regressed on it's own (i.e. completely disappeared), then we can declare victory. Naturally I really wanted every microcoorganism of this tumor to be removed right away, either by chemo or surgery, to redo all of the tests that showed their existance, then declare complete victory. I now realize this will not be possible, at least not in the very near future. If surgery goes well on Friday, and the examination of the tumor shows it to be dead benign matter, then I think we can say we are 90% there. It'll be a while before we get to 100%, but we'll get there I'm sure.

So, overall, really excellent news I think. Just in the last week we can see a great rebound in Tighe's energy and weight gain. Even his hair is starting to grow back. Dr. Twist expects him to catch up with the other two lads in weight/size very quickly after the surgery. For those of you who haven't met Tighe, I can tell you he's one great little lad. There's not a person he's met yet that hasn't received a big smile from him. He's the happiest kid I've ever seen. If you find a few minutes between now and Friday morning, I'm sure he'd appreciate a little prayer or some words of encouragement via the comments section!

I will post a note here on the blog after Tighe gets out of surgery on Friday. It's scheduled for 7am PST so we should have some news by around noon.