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

July 11, 2009

Bound for the Big Apple

Today, we made a big decision regarding Colin’s treatment: we will be taking him to New York City for surgery on Wednesday by Dr. Jeffrey Wisoff of NYU. This may be an abrupt change in plans for many who have been following Colin’s care.

We had anticipated receiving a second opinion from Dana Farber/Boston Children’s Hospital’s brain tumor clinic, which met on Thursday and presumably reviewed Colin’s case. In the meantime, we reexamined a referral from another ependymoma parent to Dr. Wisoff. This case was similar in several ways, and notably had a very dire outcome based on the scans.

However, Dr. Wisoff’s experience with ependymoma has shown him that the tumor is often more resectable than it appears. Upon examiming Colin’s case, he presented us with the opportunity to remove 90-95% of the tumor with a good shot at complete resection. There is a possibility that he will need a third surgery in order to approach the tumor from the opposite side for a small portion that rounds the bend of the brain stem.

Based upon Dr. Mohan’s surgical experience with Colin’s tumor, we have reason to believe that Dr. Wisoff will be successful; the tentacles of the tumor were quite distinct from the normal tissue and extracted cleanly.

As with all things, the retrospective view of the decision to seek an opinion from Dr. Wisoff and ask him to perform the surgery seems clear. However, we cannot possibly overstate our gratitude and sense of wonder that all of the pieces fell together for Colin to have a real opportunity at a cure. This represents an enormous shift in perspective from several days ago.

Larry Bock, the father of a little girl diagnosed at 12 months (turning 2 in October) spoke with us and shared his experience with Dr. Wisoff. But Larry did not stop there and went out of his way to contact Dr. Wisoff himself on Wednesday so that we could have a consultation. We were operating against the clock set by the tumor clinic in Boston in terms of making our decision.

Thursday, Mom had planned to go to New York, stop by the office, and hand deliver the imaging and surgical notes (we have retained copies of all of these for our records, of course) to Dr. Wisoff’s office. Colin’s trip to the ER put a crimp in that plan, but Dad took over courier duties and went to the city instead.

The decision to deliver the materials in person was partly to beat FedEx but was perhaps fueled more by the need to impart our sense of urgency and importance in this case. Although the doctors were in surgery at the time, Dr. Wisoff agreed to look at the case once he was out and promptly spoke with Mom about his analysis.

Dr. Wisoff was extremely forthcoming in his conversation and answered all of our questions. Probably the biggest issue was one of timing: Dr. Wisoff has a vacation planned for the week after next and then has a large case scheduled immediately upon his return. The only way he could operate on Colin in a timely fashion would be to rearrange his Wednesday schedule, cancelling office appointments, asking his partners to accommodate the change (one of them would also have to join him), and perform surgery on that day.

In order to make the arrangements, we would have to come to his office on Friday morning (normally, he does not see patients on Fridays) for a consultation and to set up the surgery. Dr. Wisoff said that he did not want to pressure us but that time was not on our side and that it was not wise to let Colin continue untreated.

It was clear from the start that Dr. Wisoff was beyond accommodating in his attention to Colin’s case. However, it was more and more apparent as we went through the process on Friday of visiting the office and arranging various aspects of the surgery how unusual it was for them to push through a procedure with so little patient contact and preparation time.

We overheard the office manager on the phone scheduling an appointment for a new patient and explaining that the next available appointment would be in August. Dr. Wisoff’s time is not dispensed lightly, but he also cares deeply about his patients and understands the plight of parents.

The issue of risk was the focus of Thursday’s phone conversation with Mom. Our concern as parents has always been to make appropriate decisions for Colin that balance his quality of life with the opportunity for cure. We knew that a second surgery would be absolutely necessary but were terrified at the prospect that we would expose Colin to significant risks while not taking the necessary step to full resection. However, we were led to believe that full resection in a single procedure would bring with it unacceptable risks.

Dr. Wisoff asserts that brain stem stroke is not a significant risk (less than 5%) and he has had little problem with that in his experience. It is important to note that he is surgeon who deals with tumors day in and day out and often performs procedures in difficult cases such as Colin’s, so his experience is no small thing.

While Dr. Wisoff was adamant about the gravity of the risks we face in the upcoming procedure, we pointed out that these are absolutely no different from the degree of risk we had already signed on to. The big difference was the opportunity for a full resection (and, thus, a possible cure).

Also on the point of risk, we discussed our overarching concerns and our sense that he was a person who understood our perspective in preserving the quality of life of our child. He certainly is an aggressive surgeon because that is what is required to accomplish the goal, but he is deeply aware of the consequences and does not wield the scalpel thoughtlessly.

We have the utmost faith that he is able to balance the goal of total resection with the need to keep Colin safe (within the hairy context of safety presented with this very risky kind of procedure). It may be hard to explain how one can arrive at this conclusion with so little information about another human being. We certainly felt it before even meeting him, and Larry Bock’s perspective fed this perception.

Anybody who is interested in getting a feel for Dr. Wisoff’s manner can take a look at this video of him discussing the program at NYU.

We feel we are in competent and compassionate hands. Dr. Wisoff set up a consultation for us with the neuro-oncology group. Given Colin’s case and the extensive reach of the tumor, we are probably looking at chemotherapy rather than radiation. While conformal radiation has been extremely successful for many young ependymoma patients, they have told us that the part of the tumor that wraps around the brain stem makes radiation dangerous in Colin’s case. Proton therapy does not offer any additional advantage for similar reasons.

Although the oncologists are not in a position to make a specific recommendation until the surgery is completed, two of the three factors (age, tumor location, and degree of resection) already lean them in the direction of chemo. It is possible that we can use chemo until Colin is old enough to tolerate radiation without damaging side effects (age 3).

Right now, it looks like they will probably recommend a course of six rounds of chemo starting within several weeks of the surgery. We will talk more about the details and specifics on the protocol after the surgery is done.

However, we can say that we feel very comfortable with the oncologists. The treatment center is beautiful and kid-friendly with comfortable treatment rooms and a cute play area. They are fully staffed with child life specialists, social workers, and even a librarian who will help us with research.

We had been focusing on going to a children’s hospital, but that has been a bit of a red herring in this case. NYU offers us the pediatric neuro-oncology specialists and comprehensive pediatric-specific support without the children’s hospital environment. We are closer to home and work and able to receive the support and care that the family needs.

After much deliberating, we know that we have made the right decision. Strangely, it comes through a lightning quick process and unpredictable series of events. We especially thank everybody who helped make our visit to New York possible by looking after the kids, as Colin was still in the hospital and Aidan went to camp.

Miss Julie (Julie Bayne) came bright and early with her son Jimmy to stay with Colin on her day off. Aunt Kirstie spelled her with Simon and Uncle Mark in tow. On short notice, Riye Aoki picked up Aidan from school and insisted on feeding him a good dinner. The entire day was unpredictable and unexpected, so we are unbelievably grateful for the flexibility and understanding that everybody has shown us today and on many other occasions.

While we have broadly thanked everybody for their support , our decision to take Colin to NYU and the kismet in the timing (had we pursued the opportunity any later, Dr. Wisoff would have been unavailable) are the direct result of all of the encouragement we have received. So many people have underscored the importance of our advocacy for our child, buoying the “unorthodox” decision to bring Colin home from the hospital and our explorations of other treatment options.

If there is anything we have learned through this process, it is that we do have power in an otherwise powerless situation. Our lack of knowledge of the science of the situation does not trump our understanding of our child or our own family’s needs. Not only has this improved our quality of life, but it has served to create the conditions to improve the outcome for Colin.

In discussing our decision to take Colin to NYU with Dr. Mohan, we did mention our (strong) feeling that parents need to be empowered in playing an active role in the treatment team. We encouraged him to consider suggesting that other patients in a situation similar to ours return home rather than waiting for parents to assert themselves, as in our case.

We also expressed our gratitude for helping our family and safely getting Colin out of a critical situation. The team at Westchester has been wonderful and we had a great experience there. However, this case is too complicated for them and we require experience in treating Colin. We believe that the surgeons there will grow into that role, and they have the same compassionate and caring quality that we seem to encounter with pediatric neurosurgeons.

Let’s keep our fingers crossed for Wednesday and have fun over the weekend. Colin is welcome to socialize, but please be aware that he is immuno-suppressed from the steroids and it is important the he remains healthy for his operation. We will be leaving for New York on Monday, as his pre-op testing is early on Tuesday; any local visitors should come by before then. And our New York contingent will have the opportunity to visit us post-op over the coming weeks!

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