Celebrating 10 years!!! Surgery date April 30, 1999

SURGERY April 30, 1999

Complete Resection of Craniopharyngioma

After searching hi and lo for a certain scrapbook...I came up blank. I know exactly what scrapbook and what box. But, alas, we have moved numerous times since then and it is at the moment buried.  So this picture was sent to me by my mom.  She advised us to take pictures during the whole surgery ordeal, she said that one day Emily would be interested to see and read about her surgery.  The day is here, Emily has been asking and luckily we did take a picture. Actually only 3 were taken in the hospital. It was a tough ordeal and Mike didnt care to remember it.  So we only took 3...and I will continue searching for that scrapbook. Until then, this picture was taken a few weeks after her surgery.  

Surgery day was the hardest day of my life.  We had the sweetest aenesthesiologist who has since retired. He realized the delicacy of the situation and sat me in a rocking chair and passed me Emily.  He allowed me to rock her gently as he put her to sleep and then gave me a few moments with her before he took her from my arms.  We then waited.  Emily had received a beautiful blessing the night before her surgery and we were optimistic that things would go well.  We waited in a small waiting room off the Icu area.  We were told the surgery would be close to 8 hours. Kristin and I occupied our minds by playing game after game of yahtzee (thanks Ola).  After just 5 hours, our surgeon, Dr. Hamilton emerged.  We were shocked to see him so soon but this turned out to be smashing news!  The tumor had begun to invade a few areas of Emily's brain.  The optic nerves, the hypothalamus and of course the pituitary gland. Dr. Hamilton was concerned prior to surgery that the tumor was adhered to the hypothalamus and would not go near the hypothalamus to remove any tumor cells as this would cause irreversible damage for Emily.  However, Dr. Hamilton went in and was able to deflate (drain) the tumor and as he did so...it fell away from all the structures we were concerned about. It fell right off the optic nerves and right away from the hypothalamus.  The pituitary gland was a loss, but we pretty much knew that and were prepared for that. The tumor grew right along with the pituitary gland during development and there was no way to separate the two structures.  This was not unexpected news and we were prepared for it.  We were thrilled when Dr. Hamilton told us that he was able to cauterize the remaining cells of the tumor and that he was able to perform a complete resection of the tumor (meaning he got every last darn cell!!) The surgery could not have gone better and I attribute this not only to the skill and care of the surgeon but also to the many prayers offered on Emily's behalf.

The surgery was done...but we still had to face recovery.  This was BRUTAL!  I cant even go into detail...just know it was torture. I was with Emily at every moment of her recovery and because she couldnt speak it was so so difficult to know what she needed. She did not sleep because she was on a high dose of steroid.  Her face swoll so large that on day 3 her eyes were swollen right shut and they would just cry these huge tears. The doctors were testing her for something called diabetes insipidus so they were only allowing her to take in so much liquid at a time and the poor thing was starving. We eventually began sneaking her liquid because we couldnt take it anymore (turns out she did not develop this condition).   It was exactly 3 weeks before she gave us her first smile post-op.  That was a great moment and I remember it well...it was then that I knew we would all get through this and be alright! Over the next few weeks and months we realized another miracle had occured. Emily could see again. We weren't sure as to what she was seeing or how well.  We were just thrilled she could see. Our opthamologist had warned us that the optic nerves were not forgiving and once moved, rarely did they regain function. We tried patching one eye to see if it was just being lazy...but it wasnt being lazy. It did not see so this drove Emily CRAZY (duh) and patching did not last long.  She could see and we took that as a miracle and to see with 1 eye is sooooo much better than none! We made it through diagnosis, we made it through surgery, we made it through recovery, we learned how to manage Emily's medicines, Mike passed his medical boards just 2 weeks after her surgery, he then graduated Medical School (where he received special mention and a standing ovation), we found out baby # 2 was coming,  we celebrated Emily's 1st Birthday and Mike began his surgical residency! Crazy crazy time for us!

We continue to manage Emily's health conditions. This is truly an amazing thing for us.  She does so well on her growth hormone and her other medications. The amounts change frequently with her growth and it definately isnt a perfect science.  Overall, she can be managed easily with a few ups and downs.  She is still being monitored for any re-occurance of the tumor.  Unfortunately these tumors, tho benign, tend to re-occur even with a complete resection.  So we now have graduated to a yearly MRI to check for anything and so far nothing!  We are now 10 years out and feel more confident with each passing year that we have seen the last of that tumor! Emily is truly a blessed little girl!!