[/caption]Last January, we decided to go to Amelia Island, Florida to celebrate Ellie's 8th birthday. Every since I'd moved north, I'd had the thought that if I could just get somewhere sunny in January, I would be in better spirits for the rest of winter (which seems to last until May some years). And, quite frankly, we are really good at being on vacation.
Upon our return, Ellie had an MRI. Dr. Iskandar (the pediatric neurosurgeon) explained that the shunt that was routing excess cerebral spinal fluid from her brain to her stomach was beginning to fail. The tumor had grown enough to make the shunt less effective. He felt like it was only a matter of time before it completely did not work and at that point we would have to do an emergency partial resection of the tumor (aka brain surgery). Thom & I went home to discuss this rather large decision we had to make for which I felt solely under qualified. For years I had struggled against the possibility of having to do another brain surgery, I didn't feel I could bear to witness Ellie going through something like that again. But, when it was presented to us this time it didn't really seem like a decision needed to be made, it seemed like the next logical step on our journey.
[caption id="attachment_136" align="alignleft" width="300" caption="A previous trip to the beach with cousin Katy."]
[/caption]The surgery was scheduled for April 4. Which meant I had two months to ponder. Typically we have had emergency types of surgeries and procedures. While it is certainly not desirable to be in an emergency situation, at least it eliminates the pre-surgery stress build up. I was determined that this time I would not fall into the worry spiral that ends in the well of despair.
I remember in Chicago Ellie (Betsiat the time) and I were waiting to see her oncologist. Sitting beside us was a couple who were waiting to speak with a cardiologist. Their baby needed heart surgery and they were traveling around interviewing doctors. I shared how Ellie had had emergency brain surgery. We looked at each other in amazement. I couldn't imagine having months and months to set up a major surgery, time enough to interview doctors. On the other hand, they couldn't imagine having emergency surgery and not being able to prepare for it.
[caption id="attachment_458" align="alignright" width="300" caption="The opposite of Ben in Florida."]
[/caption]There was a moment of clarity for me while I was driving the car (usually in the car or in the shower is when I have those moments.) I suddenly thought, if I spend all day today worrying about Ellie having surgery in 2 months, then she might as well have had surgery today because I would have missed what actually happened today. I knew that I didn't want to miss today. I decided I would spend every day acting as if we were on vacation--seeing people and doing things that we love. It helped keeping myself busy too, because then there wasn't as much contemplation time. That's not to say that the upcoming brain surgery was not constantly in the back of my mind, it just didn't (always) consume me. It was more like background music. I also began to prepare for the upcoming event by organizing things and cleaning (I practically felt like I was nesting.) It was challenging, however, to plan anything beyond the surgery because I had no idea what our lives would look like after surgery.
My mom arrived a few days before surgery to help us out. She is one of those people that when she leaves after a visit, it actually feels as if a member of our immediate family has gone missing. She just rolls into our lives so easily. She also loves to do laundry and always takes over that task when she visits.
[caption id="attachment_158" align="alignleft" width="300" caption="Dan, Sara, Zach, Noah, Mia & Hanna"]
[/caption]The evening before surgery, I was running around preparing everything for the big day. My heart was pounding as if I were running a race and it helped to keep moving. Thom's younger brother, Dan skyppedus from China where he lives with his family. We were all pretty tense and uptight and Dan was completely on fire, it was like watching a comedy routine, so funny was he. After we hung up, Ellie said, "That was a great movie of Uncle Dan!"
The night before surgery, I stood in my closet picking out my outfit for the next day, wondering, "What does one wear to brain surgery?" Nothing seemed quite suitable. That night, no one slept well. We were all on high alert that Ellie might wake up and go eat or drink something (before sedation you are not allowed to eat or drink.) I think she had to be at the hospital at 6am or something equally early. Fortunately, although she was awake, she never even asked for anything to eat or drink. We all went to the hospital together, with a very sleepy Ben in tow.
[caption id="attachment_218" align="alignright" width="300" caption="Ellie & Agogo"]
[/caption]When we arrived, we discovered that there was an emergency surgery that Dr. Iskandar needed to perform before he could work on Ellie. The great thing was that because Ellie was busy chatting up the nurses, talking with Agogo (my mom) and reading books, she didn't even notice or ask to eat or drink.
Then, one of our great friends, Esther, showed up with a brand new soft, floppy giraffe for Ellie (Ellie's favorite animal). Esther's husband, Dave, a doctor at the hospital, also stopped by. He was recently published and celebrity for being the best in his field. When he showed up, we joked that we should make sure that everyone saw us with him so we could get VIP treatment. He suggested it might be better if we NOT mention his name, that we might actually get better service that way...I wonder if he thought we might ruin his reputation with our antics...
[caption id="attachment_465" align="alignleft" width="300" caption="Oh to be back on the beach in Florida..."]
[/caption]When it was Ellie's turn for surgery, she began to cry (probably because she was having so much fun with all her new found and old friends) and saying "It's not fair". At that point, everyone around, including nurses, just about started crying because who in the world thinks any of this is fair? Fair has nothing to do with any of it.
There was a surgical waiting area at the hospital that we were directed to. As we went, Ben innocently asked, "Where is Ellie?" I felt like a crystal bowl that was knocked off a shelf. Like a stick of butter that melted into a puddle on the floor. All the anticipation and worry errupted from my body in the form of loud tears. I started thinking about where Ellie was and what was being done to Ellie at that very moment. Unless you are a surgeon, it seems best not to ponder these details. Fortunately, my hysteria was short-lived and we proceeded to the waiting area. Esther hung out with us for awhile and then went to pick her 2 adorable children up from school. Then our friend, Cynthia showed up to hang out for awhile, while Thom & Ben went home for some playtime & bath time. We waited and waited and waited. Every hour the receptionist would come over and say, "She is still under the microscope."
The room became less and less populated as the day wore on. Offices around us started locking up and going home. The lights began to dim around us and still we sat. The floor cleaner began to clean the floors. And still we sat (or paced or chased Ben).
Finally at around 8:30 pm, my mom said she needed to go home because she physically felt ill. Well, if she went home, then I would have to go home too because Ben would not be allowed in the recovery room. At this point, we desperately needed the help of my older sister, Susan. She is really good at telling people what to do. So we got on the phone with her so she could come up with a plan and just tell us what to do so we didn't have to think for ourselves. She relished this opportunity as she feels in most cases I do the exact opposite of what she wishes. Our plan was for me to go home, drop Ben & my mom off and then return to the hospital to see Ellie after surgery. Instead, once we got home, it seemed better for me to stay at home, get Ben to bed and return in the morning (see I still didn't follow Susan's plan even when I asked for it, how's that for gratitude??) It felt highly unusual to not see Ellie after brain surgery. Fortunately, I was so exhausted that not seeing her only added to the general weird, dizzy, spacey way that I was feeling. I almost felt as if I were having to choose between my two children, a feeling I would have quite often while Ellie was in the hospital this time.Thom said that when Dr. Iskandar came down after surgery, he was so excited that he had been able to remove 50-60% of the tumor. Thom sort of nonchalantly said, "Great". Because he had not
[caption id="attachment_466" align="alignright" width="300" caption="Ben cannot believe the size of the puddles in Florida!"]
[/caption]expected anything less to have occurred and because he does not show unbridled enthusiasm like Ben & I do. For him, that was pretty darn excited. Then, Dr. Iskandar ran off to perform another emergency surgery (he is the only Pediatric neurosurgeon in the region and nationally renowned.)
Thom reported that when Ellie came to from surgery she was immediately back to herself, chatting everyone up, reading books. He said it was amazing. Then, just as suddenly, she stopped talking and started having a seizure, the worst he had ever witnessed. This led to her being intubated and sedated for several days following the surgery, but that is another story.
Several months later, Ben would ask me, "Why you cry at hopital?" He was still trying to figure the whole thing out.
Oh, Debi. Your Ellie is so precious. Thank you for sharing your story.
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