Thursday, December 01, 2005


Everything went very smoothly yesterday for the MRI. They were an hour behind and Theo did great. He hadn’t had anything to eat since about 5:00 a.m. and none of his medications but he remained very calm and content until about 11:40 (an hour past the scheduled time for the MRI). I did get a little upset with the radiologist, or rather, I took my frustration out on him, when he came in to get yet another history. Two people had called from the department earlier who wanted to know all his history—the diagnosis, the treatment, the surgeries, and “now, tell me again, why was the chemotherapy discontinued…” . I had asked one of the people who called why, when the whole thing was on record in that very hospital did people continue to require me to tell the whole story over and over. They didn’t have a very good answer and neither did the radiologist when I asked him why I need to give the history 5,000 times. In addition to having talked to those two people on the phone I had not 5 minutes earlier filled out a bunch of papers asking for diagnosis, surgeries, medical problems, reason for the scan, etc and I was very thorough in filling out the form. So when Dr. Whatever-His-Name-Was came in and said, “I just need to get a little history…ummm, what brings you in for the scan?” I just about flipped out. At that point Theo was also getting fed up, was feeling hungry and wanting his morphine I imagine, and he was crying. So that wasn’t pleasant, but I gave him the history anyway, just to get it over with, and of course he was all apologetic, but didn’t have a good reason either for why they can’t just freaking access the history or simply read the paperwork I filled out. Finally, the nurse came in and gave him the chloralhydrate to sedate him. He was totally out in about 2 minutes, went through the MRI beautifully and was able to open his eyes for the nurse to show that he was ok (after a lot of tickling and undressing and rubbing with a cold cloth) and then immediately went back to sleep for about 6 hours.

Today was the big meeting with all the doctors to review the results from yesterday’s MRI.

The tumor shows new growth.

It is back and is currently about one fourth the size it was when it was removed in August.

There is no news that would be good news at this point, but I am relieved that that the tumor is back. It’s a terrible thing to think and to feel, but it is preferable to the alternative. That he would live his whole life, however long it might be, with this severe brain damage, never developing, never growing up, never doing anything more than what he does right now, is unthinkable to me. I would never want a life like that for him. Or for us. So these results today, although heartbreaking and now giving dreaded certainty to our fears--we know now how limited is our time with our sweet boy--at least they confirm that he won’t have to live his life severely impaired, unable to function and with little to no quality of life in the long term. I have so many mixed feelings I can’t even begin to describe all I am feeling, but I can say that relief is high on the list. I am sure that more grief and sorrow and pain and hurt and confusion is waiting in the wings, but I am relieved just to know, to have some concrete knowledge of what to expect and what is happening.

Dr. Ward can’t say how fast the tumor is really growing because they grow exponentially. The new growth started with one cell, that cell divided into two and those two divided into four and four turns into eight and so on. So, the bigger it gets the faster it grows. I asked specifically for a time and he said that he really doesn’t know for sure but if he had to guess he would say three to sixth months. It could be a little longer, probably not less than that.

We wanted to know what to expect when the time comes, what behavior to look for, what symptoms we would see. Dr. Ward said that Theo would get more sleepy, less active, harder to rouse. He might just go to sleep and not wake up, or he may have some difficulty with his breathing toward the end. If you’ve ever been with someone at the time of their death, or very near death, you may have heard that kind of breathing; labored, rattling, long pauses between breaths. He may do that, but he may not. I just hope it will be very quiet and peaceful for him and for us. It’s strange to think how undramatic the whole thing could be and yet when it happens, I just know my whole world will crumble. No matter how prepared I think I am or might be, I know that I won’t really be ready or truly prepared when it actually happens. Nobody ever is.

The ventricles look really good, much smaller than the last MRI done in mid-September before our discharge. This shows that the shunt is working well and keeping the pressure down in his brain. This ensures that he won’t have any headaches, nausea or other symptoms caused by pressure in the brain as the tumor grows.

They also asked about his current behavior and how he’s been. We told them about his sleeping difficulties, his problems with the acid reflux, the breathing problems with the ng tube and about our visit to Dr. Hanes.

Dr. Ward said he thinks the surgery for the g-tube would be a good idea and would ultimately make Theo more comfortable. And if he thinks so, then I feel okay with it. They were all also very concerned for us, staying up with Theo all night, never getting enough sleep. So they spent a lot of time talking about his medicines. They put him on methadone to replace his regularly scheduled morphine. We will keep the morphine and the ativan to give on an as needed basis, if he gets really agiated, but the methadone will be his regularly scheduled pain medication. It’s stronger and won’t need to be administered as often. Although they did say that they don’t think he is in any real pain, that his agitation is most likely neurologically driven—a result of his brain damage. But regardless, the medications calm him and he is definitely more content when they are given. So we don’t care if he is merely being sedated, it is better than watching him cry and scream and arch his back and be overall miserable. The doctors seem to agree. And if there is the slightest chance that he might feel any pain, I want to take it away completely.

When we were discussing Theo’s not sleeping at night I said, half kidding, “Why don’t you give us some of that chloralhydrate, that knocked him right out” and they just said, “Ok, we can do that”. So we now have the chloralhydrate to give at bedtime so he will (hopefully) sleep through the night. It’s a very commonly used medicine for sedation. He got it for the MRI yesterday and had gotten it previously for MRIs while we were in the hospital and my dad said that it’s frequently used in pediatric dentistry, but I didn’t think they just gave it to people to use at home. I guess Baby Theo might be a special case.

Chloralhydrate is very fast acting. It's used in tranquilizer guns to sedate wild animals and is also the drug that people are talking about when they say somebody “slipped him a mickey”. Evidently, back in the day when sailors used to come in for shore leave and pick up “girls”, the “girls” would “slip him a mickey” and then rob the sailor while he was out. So starting tonight, we are slipping Theo a mickey at (our) bedtime and hopefully he will sleep through the night and so will we. Although, for the next 24 hours he has to get his scheduled morphine every 2-3 hours along with the methadone so he won’t have withdrawal symptoms. After we get him on a regular methadone schedule, he won’t have to have morphine every 2-3 hours and we will all be able to sleep through the night—knock on wood and keep your fingers crossed.

That’s about all I have to report for now. His surgery for the g-tube is on for December 16th early morning. That is the next big thing. I will keep up posts in between to let everyone know how he is doing with his new medicines and how we are doing with sleep and everything else.

Please do keep us in your prayers and in your thoughts.

Sending love,

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