Backstory through April 7th


My husband Mike (age 38 - shown here with 15 month old Baxter in March 2006) was diagnosed with a benign brain tumor (craniopharyngioma) in October 2005. His only symptom was a glare in his peripheral vision. If left untreated, these tumors halt all pituitary functioning, cause blindness, neurological and personality changes. On Nov 11th, he had an almost complete removal of the tumor (except for a rim along the hypothalmus) through a new endoscopic approach through the nose and sinuses (at T. Jefferson hospital). He recovered well and returned to work at Christmas.

He was scheduled to start radiation therapy to prevent regrowth in Jan, but an MRI revealed that the remaining cells had formed a cyst. On Jan 28th, he had an additional surgery to implant a shunt to drain the cyst. The procedure had to be repeated twice over that week because the location of the shunt was not quite right. Over the month of February, he was supposed to start radiation, but the surgeon spotted something questionable in the MRI that made him suspicious that an infection was brewing. Radiation in the face of infection can have catastrophic results, so radiation was postponed. Over the course of the month, Mike was not himself. he was fatigued, unenergetic and at the end of the month, appeared to have lost his sense of direction. Throughout this time, bloodtests continued to show no problems.

The week of March 13th, I watched as his cognitive abilities changed before my eyes - becoming forgetful, not knowing the day of the week, and falling asleep mid-conversation. I was in touch with the neurosurgeon all week and multiple MRIs and blood tests showed no problems. I even sent him to the ER on friday, March 17th and he was sent home with a clean bill of health. The main problem throughout this time was that Mike was funny, friendly, and did not feel as though anything was out of the ordinary - so was not in the state of mind to say, "Can you give me a neuro exam? I'm not funtioning properly in terms of my cognitive abilities." The next morning, Saturday, I watched as Michael cognitively unravelled. He began confabulating (making up things that never happened), and his short term memory vanished. He couldn't even recall if he had taken his meds or not or even what meds he was on (which, with a non-functioning pituitary gland and numerous life-saving medicines, can be fatal). He tried to feed 15 month old Baxter breakfast multiple times and he thought the date was Jan 28th.

I brought Mike to the ER at Jefferson that afternoon and told the ER doctor that I could NOT take this man home in his current state. It took 3 hours of explaining that "Mike presents well and is funny and charming, but I guarantee that a neuro exam will reveal major problems." Finally I was heard and he was admitted that night. Sunday, in the hospital mike got worse. Sunday night his fever was 104. One of his hormonal imbalances due to the tumor makes him urinate so much that he becomes dehydrated. With meds, this is no problem, but the balance was thrown off and he spiraled out of control on Sunday-Monday. His vision loss continued to the point that he was almost blind. His sodium was 168 (normal is 135-145) and his resting heart rate was 160. Because he kept having to use the bathroom, he repeatedly would get out of his hospital bed heading for the bathroom, and would forget he had an IV in, so would rip it out of his arm or the wall. He also tried to leave the hospital in a mad dash down the hallway. So, Sunday night and Monday, Michael was strapped into his bed in the Neuro ICU. At that point, we were not certain that Mike would be coming home from the hospital. Finally, with no other options, they decided to remove the shunt in his head on Mon afternoon.

In a sort of miraculous turnaround, after surgery Mike quickly began to improve. Over the next four days he got back to normal, sodium and heart rate down. Cells from the shunt were tested that week and revealed that there was, in fact, a slow growing infection is his brain. They administered huge doses of targeted antibiotics through his IV.

However, MRIs also revealed that the remaining tumor cells, having not been radiated due to all these complications, had regrown at an unprecedented rate - making the tumor almost its original size. This meant after all this, we were almost back to square one. So, they attempted to remove the tumor again using the endoscopic approach (for the second time) on tuesday March 28th. Unfortunately, the scar tissue from the first surgery made this approach fruitless. All vital structures are stuck together with scar tissue : optic nerves, corotid artery, hypothalmus.

Because Mike's vision loss and double vision were quite bad, any chance of resuming his old life and job depended on having vision restored. The only chance of this was through a craniotomy - a fresh approach through the skull. This took place Tues, April 4th.

The craniotomy involved an incision from the ear up the skull along the hairline to the top of the head. Once inside, Dr. Evans spent hours trying different avenues to gain access to the tumor with no luck. The entire area is interconnected with scar tissue - carotid artery, hypothalamus, optic nerves. He had to back out and say the next step would be radiotherapy. On Wednesday Mike was kind of there but tired, and on thursday about the same. Friday am Mike was almost impossible to rouse and didn't know where he was and responded inappropriately to questions. They rushed him to surgery Friday am to put a shunt in to drain some of the fluid that was collecting in the third ventrical. They also removed a portion of the skull to give his right frontal lobe room to swell with less risk of damage. After surgery he was able to follow basic commands (squeeze my hands, wiggle your toes, stick out your tongue) but still had trouble with where he was and other basic questions. Sometimes it was gibberish. Other times it was just non-sequitors. Once again they have his arms and feet restrained because he gets restless and tries to pull at his various dressings and IVs (and given that he has no skull bone over his brain in the front, that's not a good thing).

As the day went on he seemed slightly more alert... nothing dramatic, but more likely to be able to give appropriate one word responses. It took a lot to rouse him from the sleepy state he seemed to be perpetually in. His heart rate was quite high (140-150).

Before I left that night, I got him wide awake and he was able to look me in the eyes with his left eye (right eye is still swollen shut). he told me he loved me and I told him that we were a team and that we would beat this to which he replied confidently, "We will." I kissed him goodnight and he repeatedly said, "kisses" in a quiet voice as he drifted back off into slumber.

(summary through April 7th)

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