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

July 28, 2009

New Belly Button

On Monday, Colin had surgery to install a G-tube (a second bionic belly button next to the organic original) and perform a fundoplication, which serves to prevent reflux. Over the weekend, Colin appeared to suffer from symptoms of a run of the mill virus and had a few bouts of vomiting.

Though we suspected that the vomiting was either the virus or the effects of continuous feeds (they also switched him to faster periodic feeds to allay this) rather than reflux, it was an important reminder of the importance of protecting Colin’s health.

We also had an opportunity to meet with Dr. Sharon Gardner, the oncologist who specializes in the youngest patients at Hassenfeld. Before then, we were able to research clinical trials around the world that would apply to Colin. Although he would not necessary enroll in one of the international trials, we could always follow the protocol if it made sense.

The consensus is that, given Colin’s age and the presumed dissemination of the disease, chemo is the front-line therapy at this point. Dr. Gardner is open to looking at protocols outside of Head Start III, including a study currently taking place at St. Jude’s. This study requires our presence for enrollment, but the clinicians there are willing to share their experiences and the protocol with our doctors.

Also, we learned a lot from researchers/physicians in the U.K. and Germany. The European approach to ependymoma seems a bit different and perhaps not as advanced as far as the radiation-based therapies. They have been working with various chemo regimens and there seems to be particular emphasis on the drug methotrexate, which can also have serious side effects. There is a second drug that helps counter its negative effects, and this is typically used here in the U.S. at least.

Dr. Gardner is looking into the differences between the St. Jude’s study and Headstart III, but her general impression (based on Mom’s notes from the published study information and an amateurish map of the treatment schedule) is that the St. Jude’s protocol, even before the myeloablative chemo phase (where the bone marrow is destroyed due to toxicity from the drug thiotepa), is gentler. Their thinking, according to the coordinator, is that this new regimen is better tolerated by the children. Given the paradox of the relative chemoresistance of ependymoma and the need to use it in cases such as Colin’s, we strongly lean toward the kinder and gentler chemo. Furthermore, radiation is an inevitable reality for him, so there will certainly be more opportunities for rigorous and lengthy treatment.

In addition, Dr. Gardner is finding out more about the Phase I trial at Memorial Sloan Kettering to deliver targeted radiation within the spinal fluid. She also suggested that we initiate contact with Mass General about the proton therapy there.

In addition to the team here at NYU, we are/will be explicitly consulting with Dana Farber, St. Jude’s, Memorial Sloan Kettering, and Mass General. Informally, I have contacted researchers abroad and elsewhere in the U.S. who have provided us with valuable insight into ependymoma and their experience in treating it.

The point isn’t to blindly consult with a laundry list of experts but to identify centers that have particular expertise that is useful to Colin’s case. In addition, ependymoma is a rare enough cancer, with Colin’s presentation (his age and the extent of the disease) a particular oddity. Ependymoma suggests a global approach to information gathering, with less common versions like this demanding it, at least in our opinion as parents.

Oncologists, especially the pediatric variety, would love nothing better than to be run out of business, but the work lends itself to practitioners who will help families that they have never met and who will never see the child as a patient. We have been fortunate to benefit from the casual and formal input of many experts, empowering us to make better decisions for Colin and hopefully provide him with a better prognosis.

Monday was also rehab visit day, with Mom taking a look locally at Rusk and Dad venturing to Blythedale. Both facilities appear to provide excellent therapeutic care, but the decision is based on a matrix of factors, including access to the medical team; potentially discharging for chemo; location relative to home and family; emergency care.

In many ways, continuing Colin’s treatment here in New York makes the most sense. We don’t even know how long he will need acute care. We sense that his swallowing is slowly getting stronger. Today, we noticed that his right eye, which has been open by a slit even when closed since the surgery (requiring a nightly application of an opthalmic ointment), now closes completely! The discovery constituted a minor trimph and clear demonstration that he is recovering neurologically.

One element of the decision relates to the chemo regimen that we ultimately select. St. Jude’s is a four-week cycle that, as Dr. Gardener clarified today, essentially has some degree of treatment constantly for four months. The “consolidation” phase is another two months, containing three-week spans with no treatment, and concluding with a “maintenance” schedule that could in principal be conducted at home with oral medication.

However, we may elect to stop the chemo and switch to something else (another chemo regimen, another treatment solution) if there is a significant change in the disease. The older he gets, the more we will be able to turn to radiation, which has generally shown to be more effective in treating ependymoma.

While it is important to let Colin recover following the surgery (now, surgeries), there is also a certain anxiety created by the delay between the last resection and the needed next step.

At the same time, hydrocephalus remains a persistent concern. Over the weekend, we have had various discussions about the possibility of installing a shunt, and the surgeons put Colin on the schedule for a procedure on Wednesday just in case. However, any hydrocephalus is not critical and does not immediately require treatment, as far as we can tell; with Dr. Wisoff out of town, we have been resistant to discussions about a shunt.

We were understandably alarmed when anesthesiologists stopped by on Tuesday to get consent for the shunt installation, as nobody from neurosurgery had stopped by to let us know of those plans. When Dr. Wisoff did stop in, he said that he would like to wait until next week, though he senses that Colin will ultimately need it. We do need to wait, he said, if for no other reason to allow Colin to recover from the G-tube insertion. Fortunately, his opinion jibed with the parental sentiment on the subject — we had been getting quite anxious due to the prevailing neurosurgical assumption of imminent shuntification.

There is a bit of CSF pooling under the skin near the incision on his head (none leaking out of the incision itself). His ventricles are slightly larger than they had been, but they have not continued to grow in the meantime. These are not terrific signs but neither are they indicative that his head is about to explode.

Post-surgical swelling and blood can increase the intracranial pressure for some time after surgery, which is the key reason for using the steroid decadron to minimize those effects. As Colin’s decadron dosage is stepped down (the process began last week and was reversed temporarily after he had strange heart rate symptoms that were spiking his heart rate down unnaturally; this effect disappeared after a “therapeutic” — this is a medical joke, for those not in the know — CT scan to examine the ventricles for worsening of the hydrocephalus), but there is real concern that the hydrocephalus will worsen.

However, there is also reasonable evidence that most cases of hydrocephalus for children with posterior fossa tumors eventually resolve and do not ultimately require a shunt. Colin’s age is against him in this but other factors are in his favor. The decision to install the shunt is not a simple one. There is not a definitive test that allows one to decide to install it or that indicates which patients will have a long-term need. Furthermore, it is difficult to monitor the intracranial pressure without installing a vent that measures the pressure/allows outlet of CSF. Typically, hydrocephalus is determined by looking at the patient’s symptoms, but this is much harder in a child of Colin’s age.

Since the surgery yesterday, Colin has been uncharacteristically sleepy and inactive. Again, the overriding concern about hydrocephalus always makes one question whether this is directly the result of the sedatives or pressure in his noggin. We have noted that Colin revives very quickly from sedation, but the effects of the drugs may paradoxically linger much longer in him. There is individual variation in response to drugs that we unfortunately are learning with greater intimacy and detail with Colin.

Hopefully, he will perk up tomorrow. Otherwise, I’m sure that we’re in for another CT scan.

Tonight, Dad and Aidan had the opportunity to go to a Mets game, which was probably more thoroughly enjoyed by one of the party than the other. Aidan’s camp will visit the botanical gardens on Thursday and the Bronx Zoo on Friday. He has an enviable roster of events on his calendar here in New York that he probably does not appreciate.

Dad reports that a big box of Kohl’s stuffed animals arrived for Colin at RMDH from Trudy, one of Colin’s duck-related benefactors! He has been quietly enjoying Duck and, when the toy is not tucked under Colin’s arm, it often serves to hold the hose that blows air by Colin’s face. We can’t wait until he gets well enough to play with the stuffed animals, which is something he used to enjoy. He often used to tuck a doll under a blanket or try to feed it juice or water. A bit messy, but worth the price of admission.

Seeing Colin inactive so much, it is easy to forget that he used to engage in normal boy activities. Between the trimph of the fully closing eye and our pride in his ability to communicate through finger squeezes, our expectations for his baseline of activity and interaction are dramatically different than they used to be.

This isn’t a melancholy observation as much it is as a testament to a natural parental adaptability. We are lucky that Colin is still able to manifest his Colin-ness despite his current deficits. We expect that he has a few weeks before chemo, so there is an opportunity for him to make some headway (no pun intended) before then.

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