PARENTS' JOURNAL
November 24, 2005
The next few weeks were pretty relaxing, for me anyway—I was back at work! Some very giving, loving co-workers donated their OWN benefit time to Connie so she could stay home a little longer with Hilary and help out with her daily activities. At about two weeks post-op Dr. Bogaevs’ nurse, Fara, removed Hil’s scalp staples. Soon after that she was able to actually wash her hair—a heavenly experience, I’m told.
Because her tumor is a Growth Hormone (GH) secreting tumor, Dr. Bogaev consulted a pediatric endocrinologist (the endo guy) before Hilary’s surgery to follow along and manage the MEDICAL, as opposed to SURGICAL, portion of her care. Before the surgery, her GH level was extremely high. The morning after her surgery the level was very low—almost “normal”. So, when we followed up with the endo guy at the end of January 2005 we were all concerned to learn that Hilary’s GH levels were markedly elevated. Uncorrected excess GH leads to multiple long-term health problems with the bones, liver, spleen, kidneys and heart, in addition to excess growth. After much consultation between Dr. Bogaev and the endo guy and a repeat MRI that showed aggressive re-growth of the tumor, we were given two choices: a one-time Gamma Knife “surgery” radiation treatment or a medical regimen designed to reduce the secretion of GH and possibly shrink the size of the tumor. At this time it was roughly pinto bean sized. Before surgery, the tumor was roughly the size of a golf ball. For multiple reasons, the less invasive medical route was chosen. This involved three injections a day of a drug called Sandostatin. Just obtaining this drug was an ordeal. None of the six local pharmacies were able to provide us with it. Thank God for the Internet! We did a Google search for the drug and located the company headquarters in Switzerland. They told us that if the endo guy would fax them a prescription, they would air mail us a vial of the medicine in a Styrofoam cooler packed with ice packs. It had to be flown into New York, then San Antonio, then driven to our house. Thank you, neighbor Lori, for watching for that brown delivery truck and putting the medicine vial in you refrigerator until we got home from work. By this time, Connie had to go back to work. Also, our insurance did not cover the cost of this medicine like other meds, with a $10-25 co-pay. Each vial retails around $1000 and the insurance only paid $750 of it. It’s a good thing they paid that much, at least, huh? At the initial dose ordered, one vial lasted almost one month.
The way to tell if this drug is effective is to inject it three times a day for six weeks, then do a glucose tolerance test (GTT). This is where you don’t eat after midnight, have blood drawn in the morning, then drink this nasty, sickly sweet fluid, then have more blood drawn every thirty minutes for three hours. Hilary, bless her heart, did this like a trooper. A few days after each test we’d get a call to come into the office, get the news that the latest dose had no effect on Hilary’s GH levels, and he’d double the dose. This went on for several months to the point where the Sandostatin was causing all kinds of G.I. / stomach problems, pain at the injection sites, and we were paying, out of pocket, around $800 / month for this medicine that had no observable effects (good effects, anyway). In the midst of all this Meagan and Hilary both volunteered at the Komen’s Race For the Cure in the First Aid Tent! Go figure.
Since the Sandostatin failed, we got another MRI to see if the tumor had grown anymore. It showed even more growth, almost back to the original pre-surgery size. The endo guy felt we should discontinue the Sandostatin in favor of a newer, better, more expensive drug called Somavert that costs around $35,000 / year. In early May, 2005, Dr. Bogaev, having admirably held his tongue for months, told us he strongly felt we should reconsider Gamma Knife(GK) radiation “surgery”, having given a medicinal trial a fair shot. We agreed to see a local stereotactic neurosurgeon to discuss the GK option in detail. After reviewing still another, newer MRI, he felt that Cyber Knife (CK) would be a better option for Hilary.
The difference is that with GK, the patient has a titanium halo screwed into their skull, gets an MRI done, then the MRI is digitally fed into a computer, creating a 3-D image. The computer then controls the 201 concentric beams of radiation approved by a neurosurgeon, a stereotactic neurosurgeon, a radiation oncologist, a physicist, and a couple other kinds of doctors I can’t remember right now. The patient then lays down on a movable table where the halo on their head is attached to a cradle on the table. Said table, with patient secured is then slid into the gamma radiation chamber where only certain areas of the head are exposed to the approved radiation pathways and doses, the goal being to expose the tumor to enough radiation to kill it while avoiding radiation-sensitive structures like eye tissue and major blood vessels.
Cyber Knife (CK), on the other hand, involves making a semi-rigid mesh mask of the patients’ face that will serve to secure the head to the table during the procedure. A brain CT and MRI are done and fed into a computer. Again, multiple doctors study the imagery and program the CK, which looks a lot like the auto industry assembly line robots. Using “Star Wars Defense Initiative” missile-intercepting technology, the CK robot then hovers and dances around the patients’ head at different angles, zapping away at tumor tissue, again, hopefully avoiding sensitive structures. We were told the CK is more accurate than the GK; therefore, being the better alternative for Hilary, at the time, since the tumor was almost touching her right optic nerve.
A week later found us sitting in the office of a radiation oncologist at Cancer Treatment & Research Center (CTRC). I hope none of you ever have to sit in CTRC’s waiting room, either as a patient or a family member. Anyway, it would be his job to direct Hilary’s care regarding the CK treatment. He ordered more blood work and three days later Hilary had the MRI done. The CT was scheduled for two days later; however, in late May we got a call from Dr. Bogaev who said, “I looked at Hilary’s MRI last night. Don’t get the CT. I need to see y’all in my office tomorrow—things have changed”, or something to that effect. You know what they say about the “best laid plans of mice and men”? It was about to happen to us in spades.
The next day Dr. Bogaev explained that he had, with our permission, Fed-EX’d Hilary’s MRI films to his friend, Dr. Jason Sheehan, a stereotactic neurosurgeon at the University of Virginia (UVa) Medical Center. They trained together for years. Dr Sheehan stayed at UVa to run their GK Center. UVa is one of the nation’s two “Pituitary Centers”. Reviewing the latest MRI films together, they agreed that Hilary’s tumor was too close to her right optic nerve to safely treat with ANY form of radiation, even the more precise CK. We were all dealt another blow when he told us that they felt like the best course of action was to repeat the craniotomy and surgically remove the tumor again, with the plan being to fly to Charlottesville, VA six weeks later to receive GK surgery at the hands of Dr. Sheehan. Hopefully, this would allow Dr. Bogaev to remove as much of the tumor as possible, manually, without damaging Hil’s optic nerve. Then Dr. Sheehan would “pick up the ball” and blast what residual tumor tissue was left with radiation before it has a chance to get a foothold and grow back like it did the first time.
(more to follow)
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