Life can change in a minute so cherish every second of it. I always thought I knew what was important in life but after experiencing these last 5 weeks, I realize that I really have no clue. Here is my journey to clarity; I hope my story will allow you to contemplate what is truly important in your own life.
On October 25th my son was admitted to UCLA hospital because of a headache. Most people do not go to the ER first; they try medications and if this does not work, they may see their health care provider. My son, however, is not like most people because of the brain tumor in his right lateral ventricle (click to learn more) which was found over 3 years ago. The ventricle produces cerebrospinal fluid which lubricates the brain and spinal cord. If one is going to have a brain tumor, having it in the ventricle is not a bad place because there is space for the tumor to be without pressing on any brain tissue. This of course is only true if the tumor does not grow large enough to block the drainage of cerebrospinal fluid because this leads to hydrocephalus (abnormal amount of fluid in the brain) which can be life threatening.
The doctors ordered an MRI and admitted him because his tumor grew dramatically and was causing significant hydrocephalus. Because of this he was at risk for death and needed close monitoring and medication to decrease the swelling in his brain. He also needed to have the tumor removed as soon as possible/safe. It was also too dangerous for him to come back home for the surgery. As my son is telling me this on the phone, I am shocked, scared, and feeling completely helpless since I am over 2,000 miles away. The last time I felt this helpless was when he was first diagnosed with the tumor on May 4, 2009.
Imagine getting a call one morning telling you that your son had fallen, hit his head which required stitches, required a CT scan to make sure there was no bleeding in his brain, and that the scan was normal except for a brain tumor. I was at work seeing my own patients and felt completely helpless because my son was 200 miles away. We got him home, had an MRI of his brain, and saw a neurosurgeon in a matter of 2 days. The surgeon was confident that he had a benign tumor, one that may have even been there since birth, rare in adults, and typically does not grow or, if it does, grows at a very slow rate. However, since it was found, the brain needed to be imaged for a few years to make sure it did not change. The neurosurgeon and all the radiologists were very confident that he had a choroid plexus cyst. Every MRI showed no change until May of this year when the MRI showed that the tumor did not grow but was blocking more of his cerebrospinal fluid. My son was informed that he needed to have it removed before the end of the year. Although it would be brain surgery, since the tumor was small the surgery was considered routine and he would be able to return to school in 4 weeks or so. My son is in graduate school at UCLA so he wanted to wait until his winter break so that he could have it done here in Chicago and recuperate at home.
Needless to say, I was on the first plane out. How I wished I could have just said “beam me up Scotty” and I would be at his side…it was the longest 4 hour plane ride of my life. Thank goodness his girlfriend was with him. They have been dating for several months and I was looking forward to meeting her in November when they were flying to Chicago for a family event and to see the neurosurgeon in preparation for his December surgery. This was not how I envisioned our first meeting…in a hospital room worrying about the person we love. Thankfully, she was everything my son said she was and more…sweet, caring, smart, and truly concerned for his well-being. My husband flew in a few days later. Here my husband and I are, in California, while our whole support system is in Chicago.
His surgery was not until October 31st and this was only October 26th. The doctors wanted the swelling to go down further. The weird thing about all this is that he was feeling great again. He had no headache or anything worrisome yet he had to stay in the hospital because his condition could change in a split second. How strange it is to see him look and act completely fine yet know there is an intruder in his brain causing nothing but trouble. How I wish I could just kiss his head and make it alright. We talked daily about the upcoming surgery, but our conversation the day before was the hardest. Waiting 6 days for him to have surgery was stressful for everyone; but, the surgery did not seem realistic until the day before. While we had discussed his fears and concerns throughout the week, it was just too real now.
Having a great deal of medical knowledge is a double edged sword. I can be a great advocate, explain what is happening and answer questions; however, I also have a heightened awareness of the risks, complications, and recovery of this type of surgery. THIS IS MY CHILD, how I wished I was completely ignorant. I tried to hide my fear. I could not hug him, kiss him or tell him how much I loved him enough. All the “what ifs” kept swirling in my head…what if it is cancerous, what if he loses function of his right arm/leg, what if his speech is affected, what if his personality changes, what if he will not be able to return to law school ever, what if he dies….the list was never ending.
Surgery day, finally. Our family and his girlfriend surrounded his bed, kissed him, told him we loved him, and reassured him that everything will be fine. We joked that his intruder was finally getting evicted. The doctors told us that it will be an 8 hour surgery and that they will give us updates. More waiting, it is now 10 hours and still in surgery.
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