The Jury Foreman Speaks

When juries wrap up quickly with a verdict, it can be a good sign or a bad sign, but it usually means that they have found the suspect not guilty. In this case, the jury adjourned hours earlier than expected to report that our little suspect is not guilty of having visible tumor.

At the time I heard the news that they were closing, I was at St. Jude making my way to the noontime seminar on ependymoma. It was a shock to hear that Dr. Boop was primarily concerned with hearing whether he was done so quickly for good or bad reasons. The rest was just icing. As we have learned from our experience, the flow of information trickles in, and it was several hours until Dr. Boop met us in the recover area and explained what he found in surgery (he had to do an urgent shunt revision after Colin’s surgery).

The sixth and seventh nerves were untouched, so we hope that Colin’s progress in these areas will not take any steps back. There was a hunk of tumor under the bundle of nerves nine and 10 that had been scarred from previous surgery (no surprise) and had to be manipulated in order to be cleared.

Dr. Boop’s fellow described Colin’s brain stem as “puny,” referring more to the Southern term for sickly rather than being small. However, when I pressed her on what a puny brain stem looks like, she said that Colin’s looked a bit small. I imagine it a bit like a piece of ginger that has been in the fridge too long, though I’m sure that’s nothing at all what it really looks like.

The basilar artery was protected by the arachnoid lining, so they were able to delaminate carefully without disturbing the artery. They stopped because there was nothing else left that they could see, and they couldn’t see anything on the other side of the brain stem that looked suspicious.

When I asked whether he felt that the tumor had changed from chemotherapy, and Dr. Boop said it was much easier. He agrees that chemotherapy seems to be a good strategy for improving the resectability of ependymoma. This was not something that specifically came up in the seminar at St. Jude, but we are selfishly gratified that this at least helped Colin get another big step closer to a cure and justified our decision to do chemotherapy.

A follow-up MRI will tell us how to classify the surgery and whether it is really a gross total resection (GTR), the gold standard in the treatment of ependymoma. Although the prognosis for this kind of cancer is somewhat dependent on pathological features and expected aggressiveness, the most important factor is successful complete removal of resectable tumor tissue.

The hope and expectation is that any remaining cells, of which there are certain to be some, will be taken care of with radiation. We are cautiously optimistic about celebrating a victory regarding the GTR, but we are absolutely thrilled with Colin’s immediate post-op recovery.

A Good Problem

Colin hasn’t been very happy since he woke up, but he’s been irritable, feisty and active. Although I’d prefer he not suffer, it’s good to see him move so well and try to flip over onto his knees. We can hear his voice when he cries, which is certainly a hopeful sign. However, we are giving him morphine to keep him comfortable so he is neither crying nor fitful.

The trip to the ICU was delayed by emergencies, so we waited in the recovery area for a few hours before getting “settled” in the ICU. It was a fairly unsettling settling process. We were separated from Colin and weren’t allowed to see him for several hours due to an unspecified procedure that forced them to usher out all of the parents.

We certainly respect the privacy of other families, but if it happens while we are actually in the ICU, we will be hard pressed to leave him alone (they may have to call “Doctor Strong,” the code for security). After all, we have gone through the experience of being in an ICU while another child coded, and the last thing I want is for Colin in his state of greater awareness to go through that without one of us at his side.

There is a red-eyed family here with a little baby that has an I.V. in its head. In the waiting room, they told somebody that they had to make “a decision.” We are all here for different reasons. As grave as Colin’s surgery was, we yet again come face-to-face with somebody else’s situation that appears so much more tragic.

Colin is doing so well and his prognosis (presumably) has improved dramatically with this successful surgery. Any apparent complaints that we may have are tempered with our knowledge that these are creature comforts and that another child may tumble into a more desperate crisis in our midst.

Creature Comforts

While we had been led to believe that Colin might get his own room (there are some rooms behind glass doors), he is in the open area in the chaos of this old school ICU. We are relieved that he is doing well enough to leave tomorrow. Initially, we had thought we would stay there a minimum of three nights and possibly much longer.

At NYU, it was easy to identify the bed spaces in the four-bedded pods. However, at Le Bonheur, the patients seem almost randomly scattered in a room that is cluttered with medical equipment and supplies, records, computers, and cloth screens on rollers. The staff is certainly competent and it is no criticism of the care we have received, but the environment is hectic though (thankfully) we don’t seem to have any screamers in there at the moment.

Even so, the cacaphony of hissing and beeping is enough to keep somebody awake without the ridiculous “no sleeping” rule. We get a hardbacked chair that we are not allowed to fall asleep in, though they are welcome to rouse me awake and see how I respond, should it happen.

We anticipate staying at Le Bonheur through the weekend and hope to return to St. Jude on Monday or Tuesday. It is possible that we could be home at the Target House in a week or so, according to Dr. DeWire, who seemed quite pleased to see Colin looking so good. These facts us alone are a pleasant surprise, much less the prospect that we could proceed to radiation with no reservations about the disposition of Colin’s tumor.