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

July 1, 2009

…And Still Planning

Today, we had the meeting with the surgeons and oncologist to discuss our treatment plan for Colin. It was a difficult discussion because we also went over the possible complications and likely recovery period. It is nearly certain that Colin will lose all or some of the hearing in the right ear because of the sensitivity of that particular cranial nerve and the proximity of the surgery to that area. Generally, neurosurgeons expect any patient who has that nerve exposed to potentially suffer hearing loss.

This is a small matter compared to the big picture, but it underscores the gravity of this procedure. Chemo would start as soon as his breathing and respiration are stable (this does not mean that he has to be off of the trach tube, if he’s on one), followed by a second course. The timing of the third surgery would be contingent on the progress of the tumor and his recovery.

We have also decided to go ahead with chemosensitivity testing of the tumor, despite questions on the value of these results. They may be useful at some point and there is no way to conduct the tests after the surgery, since they require live tissue. There is no cost to Colin’s health, as we have to resect the tumor anyway.

Especially given what Colin soon faces, we want him to come home. He is physically doing a lot better but does seem blue. While this could be posterior fossa syndrome showing through, we believe he misses home. It is one of the few words he uses and his prime motivation for going outside.

We could theoretically leave as early as Thursday; there are some logistics involving the surgery that have to be ironed out before he leaves. He would also arrive a day early in order to get a full MRI prior to the next surgery.

However, after we decided to schedule the procedure for next week and get Colin home for the weekend (or weekend +), we received the contact information and referral for a pediatric neurosurgeon at Boston Children’s Hospital. This doctor had spoken at Dr. Mohan’s graduation (not sure it’s called that) and is highly regarded. He is one of the two who specialize in tumors there.

Upon hearing of Colin’s case, Dr. Scott instructed us to cancel the upcoming surgery so their team can take a look at the case. For one thing, the hospital there uses new radiation therapies that are not widely available, and the full review of the case would involve a multi-disciplinary group.

Bear in mind that we also have not heard the opinion of the team in Denver. Dr. Foreman already opined, based on our phone conversation, that the basic approach we are looking at coincides with their protocol for dealing with complex ependymoma cases. We were primarily looking for an opportunity for the neurosurgeons to conference on their actual experience in these cases and perhaps to have further advice on the chemo regimen (though they do not consider this the critical piece by any stretch).

We relayed Dr. Scott’s message to Dr. Mohan and suggested that they have a conversation regarding Colin’s case. We have the pathology slides in hand, which they want, and it is a simple matter for the neurosurgeons to assemble the various imaging (we don’t have the latest quick MRI). Dr. Mohan agreed that having a different multi-disciplinary opinion would be useful.

I am sure that Dr. Scott will let us know if there is some technical advantage to moving Colin to Boston for any part of the treatment. We had already considered looking into it for the radiation because they have a sophisticated program there and handle a lot of cases. As for the surgery, we trust our surgeons and are inclined to stay (this, Dr. Foreman told us, is important and perfectly valid) but have to remain open to the possibility that there is a technical advantage in Boston.

When it comes to the brain stem stroke risk, it appears that this is less a matter of surgical technical skill than chance. Any work on the tumor in the vicinity, not just directly surrounding the perforators from the basilar artery, can cause a stroke. Drs. Sanford and Boop at St. Jude drew the same conclusion (the surgery would be extremely risky with a high likelihood of a stroke). There, they prefer to attack the tumor in a single procedure and remove every last morsel. We are looking at approximately 50/50 odds of a stroke in Colin’s case, which we have deemed unacceptable to his quality of life.

So, the saga of uncertainty continues. We believe that we will continue down the same basic path of additional surgery followed by chemo, etc. However, the additional input may be valuable and the extra week will not necessarily put Colin at risk. We will continue to look for evidence of new pressure build-up in his head and help him along in his healing process.

As we determine when he will come home, we will post that information as well as our thoughts on having visitors. It will be a great opportunity for Colin to see people and socialize. I’m sure that the many familiar faces will cheer him immensely as well as the reassurance that he is destined to return to his old haunts.

Thank you all for joining us in our family’s journey. Every day, we feed off of your wonderful support and positive energy. We cannot overemphasize how much it means to know that there are so many people out there who believe in Colin and want to help.

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