Colin Loves Tractors Follow Colin's progress through treatment for a brain tumor

August 27, 2009

Don’t Worry, Be Happy

Today, Colin did very well and was called the “star patient” of the ICU, meaning that he is a good candidate to move back to the regular floor downstairs. Today, Dr. DeWire, the fellow who is working with Dr. Gajjar, presented us with the protocol’s FYI. Tomorrow, we will sign the consent forms for various aspects of the study, including the chemo.

Pre-hyration will also start tomorrow (Friday), followed on Saturday by the first dose of Methotrexate, delivered through a 24-hour IV infusion. The levels of this drug are monitored constantly and precautions began already today to reduce the side effects of nausea and vomiting.

Although we are looking at smooth sailing into the first round of chemo, Colin generated a lot of drama along the way. His trach went in well, but there has been some anxiety about the bacterial blood infection (bacteremia) that was discovered following a Sunday blood culture. His temperature had been gliding up, accompanied by ruddy cheeks and a high heart rate, then settling down, for days.

The immediate antibiotic treatment seemed effective, although we of course panicked about the possibility of having to replace the port if the bacteremia did not clear.

Of greater concern was Colin’s perpetually near-explosive brain. Dr. Sanford, one of the local hallowed neurosurgeons, stopped by to take a look at Colin on Wednesday. The concern related to some radiological findings from the MRI; apparently, his ventricles were larger and showed evidence of reversed transependymal flow. This means that the flow of CSF goes into the ependymal lining of the ventricles due to increased pressure, showing up as enhancement from increased fluid retention in the brain matter next to the lining.

Dr. Sanford wanted to know exactly what kind of shunt Colin had, and we shamefully did not know. Non-programmable, definitely, and we recall being told it was “medium pressure,” but the key factor was whether it was siphoning or non-siphoning.

The difference is that siphoning valves will remove the CSF more quickly. In the Colin’s case, where he had moderate-to-severe (alternately described as “severe” by radiologists or as “moderate-plus-plus” by the neurosurgery fellow at NYU) hydrocephalus, the rapid draining of fluid could prove to be too abrupt.

Knowing Dr. Wisoff, Dr. Sanford guessed that it was non-siphoning but needed to know in order to understand whether it would be reasonable for Colin to sometimes experience intermittent (but not dangerous) increased ICP. The distinction is important because otherwise, especially given his bacteremia, there is always concern about a shunt infection. (Bear in mind that shunt infections are most common within the first month and 90% take place within the first half-year.)

However, Dr. Sanford also did not want to tap the shunt to culture the CSF because that would potentially introduce a vector of infection (the bacteremic blood). After a few more days of antibiotics and affirmation of its efficacy through negative blood cultures, it would be safer to do so. The last thing Colin needs is to get a shunt infection caused by a test of whether his shunt is infected.

In the meantime, Dr. Sanford felt comfortable with Colin’s clinical performance to let him ride without further panic. Among other things, he did one of the things that neurosurgeons do best, which is torture children to make them react and prove their neurological soundness (they are even better at waking them up immediately after they have fallen into a deep and natural sleep, which is a form of torture but not specifically designed that way). In this case, he used a series of pokes and jabs to inspire a satisfactory half-faced grimace.

It would be possible for pediatric neurosurgeons to take a seminar on clowning or some other amusement that would represent a more benign and even enjoyable test of a child’s mental status. But experience demonstrates that pediatric neurosurgeons must have a strong embarrassment gene that prevents them from falling into the habit of such antics; they don’t even attach amusing items to their stethoscopes as other pediatric specialists do.

Even the rather serious seeming and businesslike endocrinologist at NYU, Dr. Kohn, has a quip for children related to her name: “like ice cream cone.”

At any rate, Colin remained annoyed but otherwise unscathed from his introduction to Dr. Sanford, which is the best that a child of his medical condition can hope for. Dr. Sanford made congenial jests about Dr. Wisoff (“The only reason he operated on your child is because I haven’t killed him yet.”). Evidently, the two are collaborating on a long-unfinished but expansive and important academic article. While we are all for the advancement of academic knowledge, we are glad that Dr. Wisoff took the time to perform Colin’s operation!

During the evening, Colin’s heart rate sank into the 50s again. It hovered at around 58, a keen reminder of the many nights of bradycardia-induced anxiety. Following the less dramatic daytime excitement, we took Colin for a CT scan.

At NYU, a nighttime scan was no big deal, as there is always staff manning equipment in the emergency room. Here, however, they had to call someone in to scan Colin’s photogenic brain. The nighttime ICU staff was unaccustomed to the trip to the Chili’s building, where the radiology department is. Such trips are relatively rare, especially because most X-rays can be performed on a portable machine (more modern but less charming than NYU’s X-ray giraffe).

If it weren’t for a broad smile, the man who met us looked like he had been unexpectedly separated from his family while on vacation. Wearing shorts and a t-shirt (not standard staff garb at St. Jude), he stood in the hall looking strangely relaxed.

It didn’t require so many hands, but we had four St. Jude staff, including two nurse coordinators, whizzing Colin in his crib to CT scan. Normally, we are accustomed to helping with transfers, pushing IV poles, making sure IV lines are out of the way or other assistance, particularly for off-hour testing where there may be fewer pairs of hands around. In fact, the opposite was true and there was no room for parental intervention except in the application of a blanket to cover Colin’s legs as he went into the CT.

The results of the scan were reassuring and everybody went back to sleep. Dr. DeWire, who had almost escaped the hospital, had turned around hours before to attend to Colin. She still looked perky and chipper and was impressed by Dr. Harter’s quick response to her call to New York. (“He says to say hi!”)

Until meeting Dr. Sanford, we have lived neurosurgeon-free here at St. Jude. Frankly, it has been a bit disorienting to imagine that it is possible for Colin to go any period of time without a neurosurgeon following him. We had almost gotten used to it when Dr. Sanford showed up.

We have been heavily dependent on their services for months now and have grown accustomed to the daily convivial exchanges, even if brief. We have also been intensely curious about meeting the famous “Sanford and Boop” (clearly not a comedy team but an apt pairing nonetheless).

There is nothing we would love better than for Colin to never need neurosurgical services again, although that seems impossible given the shunt if nothing else. In the immediate future, he will be delving into the frightening world of chemotherapy.

While we are anxious for Colin to begin the next phase of treatment, the prospect of using such toxic chemicals to do so is daunting. We must be confidently sure that we are doing the right thing; this is no casual decision, though it may seem less consequential on paper.

This is exactly the reason we had been interested in the St. Jude trial in the first place and it is one of the reasons that we feel confident pursuing this therapy here. It is hard to imagine a better suited environment for a child to undergo treatment, and we are fortunate and grateful to be here.

The family will be imminently reunited with Dad and Aidan’s arrival this evening. We have our cozy two-bedroom apartment at Target House, where many of the public spaces are being renovated. All of it is beautiful and heavily funded by donation. There is a Tiger Woods library and an Amy Grant music room that is more of an Amy Grant video game/movie room that happens to have a baby grand, bongos, and other musical instruments.

The family’s address is now

Colin Hayward Toland
Target House I, room 212
1811 Poplar Ave.
Memphis, TN 38104

The phone in the apartment is 901-545-0212.

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