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

July 14, 2009

Post-Surgical Review

Dr. Wisoff gave us a quick post-surgical report, even before surgery was over (Dr. Harter was overseeing the closing procedure). He was able to successfully remove 95 – 98% of the tumor, which is great news and significantly more than we had hoped for in Westchester.

There is a small bit of stubborn tumor left on the brain stem where Dr. Wisoff felt that it would injure Colin excessively to tug at it, especially given the presence of metastatic disease on the spine. We will be pursuing adjuvant therapy at any rate, so we will see whether that piece of tumor will shrink on its own or needs to be dealt with later.

Colin’s hearing is lost in his right ear. There are indications that his swallowing is impaired and the facial muscles are weakened. However, both of these are likely to be temporary and will resolve. Also, Dr. Wisoff believes that there is no overall weakness caused by the surgery. They will try to extubate him tomorrow with the expectation that is breathing is not impaired.

In the meantime, he will be kept partially sedated because he will remain intubated. Tomorrow, he will also undergo additional MRIs to assess the efficacy of the resection as well as the extent of the metastatic disease discovered today.

Perhaps most importantly, we hope that the symptoms that he has been experiencing will improve. The tumor on the anterior of the brain stem was acting like a cork, according to Dr. Wisoff. Cerebral spinal fluid poured out when that was removed, so that is a strong indication that removing this extremely bulky tumor will free up the fluid spaces in Colin’s head. Also, we have clearly helped remove the tumor burden from the brain stem and cerebellum.

The surgery was a success, but it is hard to lift the cloud of the spots that are showing up on the MRI. Dr. Wisoff said that these are in several areas and very small, too small to remove surgically. It is much too likely that there are more spots that aren’t even showing up on the MRI. Thus, the certainty that we will be moving quickly to adjuvant therapy. The question is which form of therapy.

Before the MRI, we had hoped that the best case scenario would be a gross total resection followed by prophylactic adjuvant therapy. Now, we will rely more heavily on the adjuvant therapy to control the disease. While this is not what we had ideally hoped for, we are in a much better position than we had been prior to moving to NYU. Originally, this second surgery would have left a large piece of tumor and left us with adjuvant therapy to shrink an enormous tumor load (and, whether intentionally or unintentionally, treat the metastasis down the spine).

The spinal disease was on the first MRI performed at Westchester but was not detected by the radiologist or anybody else looking at the scans. How differently would events had unfolded if we had discovered it then? Worse, what would have happened if we had continued to treat the tumor in the head without reexamining the spine?

The most important thing is that it does not seem like any of the deficits that Colin will wake up with will be permanent, and we have taken the best measures possible to relieve the symptoms caused by the tumor. We will continue to learn what his recovery period will be like and what else will happen in the short term, such as the installation of a G-tube or the beginning of adjuvant therapy.

This morning, the morning of surgery, Mom awoke to a familiar feeling but groggily realized that it wasn’t from a familiar source. To explain, back in Westchester, the bed had an automatic inflation/deflation system to help in reducing bed sores. This would often go off at odd times and suddenly lower or raise the body.

Snuggled next to Colin here, the bed was moving around, but it wasn’t an automated system at all. Instead, Colin had figured out how to use the bed’s controls to raise and lower the legs and head. Bereft of independence, he still managed to eke out a bit of independence and mischief.

Moments like this provide hope that he will be able to express himself no matter what deficits he faces. The hardest has been and will be his flat affect, which often makes it seem like he is not paying attention or emotionally connecting. We know that neither of these is true, yet it is a constant effort to remember it without small reminders that our Colin is alive and well.

The other bright light today was the news that Aidan had a great day at art camp today. It is so easy to focus on the intensity of our experience with Colin and neglect the importance of a normal kid having a normal good day. Aidan has been a sport at the same time that he has been absorbing this experience with his little brother. He is afraid that Colin will never come home or will never be better. We surmise that he is also afraid of getting lost in the overwhelming folds of cancer treatment that have distorted the cloth of our family.

In the balance, we are happy to have good news to report today, whether that is simply Aidan’s day at camp or Colin’s successful surgery.

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