Duking It Out

We completed the five hour drive to Durham at about 6:30 pm Friday, February 29. We checked into the Holiday Inn Express (thanks, Uncle Tony!) and feasted on take-out camp stew and BBQ from the "Hog Heaven" across the street. We turned in early to catch up on our beauty sleep and to be refreshed for the full brain and spine MRI scan scheduled for 7am on Saturday.

For reasons understood by only a few organizational bureaucrats, Duke cannot provide anesthesia for several procedures that are elsewhere routinely provided for pediatrics, so Henry had to lie perfectly still for a one-and-three-quarter-hour MRI on Saturday. Sunday we spent at Durham's Museum of Life and Science which boasts, among other things, a wonderful butterfly pavilion.

Monday we had a routine physical and met with Dr. G. He took Henry off of the Tarceva, lest it interfere with the anticipated Topetecan treatments. Dr. G paradoxically said that Henry's MRI results from Saturday looked good, but revealed a new tiny spot in the fourth ventricle (since November). We reviewed the schedule for the next few days and signed the consent forms for the study. Later, we moved to a hotel with weekly rates that is near he hospital.

Tuesday was the flow test. Again, Henry was unsedated during an extremely painful lumbar puncture for a spinal tap and infusion of a radio-isotope measuring flow of the cerebrospinal fluid (csf). It was discussed with Henry in advance and, while he was not at all happy with the idea, he understood and was accepting - until the moment of truth when he panicked about the numbing injection (he had a bad memory of a painful numbing injection before his first surgery). Dr. G thought to offer some cold "freezy" spray to help numb the area instead of the injection and Henry was able to calm down and get his game on. We had been told by Dr. G that after the test we could leave the clinic and return in three or four hours for scans that would measure the flow, but the technologist said no, he had to lay flat on his back (on a gurney in the hallway) for four hours so as not to interfere with the fluid flow. Once again, Henry showed his grit and came through (and thank god for Nintendo and the iPod).

Prelim results had him passing the flow test which allows him entrance into the trial. Today [Wednesday, March 5] we went in for a follow up scan that apparently was good enough that we don't need any more scans to verify our qualification for the study. Tomorrow we meet with the neurosurgeon for pre-op, discuss the next day's surgery, and sign the consent forms. Friday is the surgery: installing the Ommaya reservoir - a small input device that will be implanted just inside the skull conecting directly to a ventricle that is manufacturing the csf, and will be the point of delivery for the drug Topotecan. We have the weekend to recover, and then bright and early Monday, March 10, we begin the first treatment which is followed by tests throughout the day to measure drug dispersion and concentration. Treatments for the rest of the week will be simpler and shorter.

Dad will probably drive home early Tuesday the 11th, and return to Durham late Friday or early Saturday to pick up Henry and Mama and bring them home.

For one week.