23 April 2014
Given the choice of Jolly Rancher flavors, I usually choose watermelon. Watermelon is also my favorite Jelly Belly flavor… well, one of my favorites; there are a lot of good Jelly Belly flavors to choose from. What a surprise today to learn that my daughter, Natalie, prefers sour apple over watermelon in both candies! Yuck.
Our conversation came in response to our visit with her neurosurgeon. In describing her brain tumor he said, “It is small, like a jelly bean.” Later we asked her what color she would choose – thus the shocking disclosure that she would choose sour apple over watermelon. (In all fairness, I do really like those apple suckers that have caramel on the outside.)
Here are some things that we have learned. Several years ago this same surgeon had another teenage Li Fraumeni patient with a tumor very similar to Natalie’s. The biopsy was inconclusive and they opted to not operate. Six or eight years later she was back – the tumor was much larger, stage 3, and the surgery was much more complicated. She lost some motor function, etc.
|“A” marks the spot. It is on the right side –
looking from the feet up
It is really the Li Fraumeni Syndrome that has everyone concerned and we all agree that it needs to come out. It isn’t such a rush and will probably be scheduled in June or later. Scheduling is a bit tricky because they need a particular surgical suite with room for lots of equipment and computers. It sounds like the computer will do a lot of the work – our doctor is the chief pediatric neurosurgeon and has done well over 4,000 surgeries and over 1,500 of them are craniotomies. He was confident, likable and seemed to have good judgement – we feel that we are in good hands.
How am I feeling about this new little jelly bean in our lives? Since we have known about it for some time – today I am feeling relieved. Scheduling surgery a couple months out feels like I have some space to breathe. The risk of complications is low at this point. Recovery will probably include one night in ICU and the possibility of coming home the next day, with a very short time until Natalie is back to normal. Everything felt like good news today.
|A double treat to have Dad come with
us to the doctor. First that he is in town
with time to join us and second that he
bought us our favorite lunch.
Dr. Selden was also intrigued to hear that Jackie had grown a chordoma – and very surprised to hear that it was in her thoracic region. We are so used to that ol’ tumor that we forgot it was so unusual.
Earlier I asked Natalie is she had anything that she wanted to share – She didn’t. Now she seems to have changed her mind:
|Pupusa de Carne Asada
with Horchata! Yummy.
This is Natalie. I consider myself fairly familiar with trials (especially physical) and in my short career I have formed a theory/thesis. Call it whatever you will but I call it the three days rule. When something horrible happens to either you or a loved one you have three days. The first day is spent freaking out. By the second day it begins to sink in. This is the day to cry and be made at the world, its the hardest. But the third day is the most important. Day three is recovery. Stop crying, breath deeply and get on with your life. It doesn’t take the pain away or bring back someone who is lost but it helps to move on and face life, which you must do no matter what. Just keep swimming:)
When I was twelve I learned to get through dental visits by sitting down and shutting my eyes. I open them when they are done. I just got back from having my teeth cleaned – with my eyes shut. As I thought there wishing I was someone else, I imagined that their sharp instruments were directed into my brain rather than at my gums…. ugh. It gave me a fresh perspective on the courage my children have displayed.
Last night I was feeling the heaviness of it all – and waiting in the car for a child – so I began to mindlessly wander through Facebook. My friend, Laurie, had recently posted this quote by Eleanor Roosevelt: You gain strength, courage and confidence by every experience in which you really stop to look fear in the face..You must do the thing you think you cannot do.”
I remembered the day we learned that the odds were highly in favor of our children experiencing cancer. I knew I could not face that – it filled me with a sort of horror. We are facing it, and it isn’t horrible. Well, sort of horrible; but the strength, courage and confidence I see building in my children bring a real beauty and joy to our lives — go figure. I am grateful.
|Waiting to be hidden and eaten!|
A few aspects of my life tell me things are not normal – I came home from the dentist craving cream of wheat and ate three bowls! That has never happened before – when I was stressed over Jackie I ate bags of chocolate. We had Easter dinner the week before Easter, colored eggs two days after Easter and have still not had our traditional chocolate bunny hunt. I have stepped over the Frozen DVD for several days without putting it away (or asking anyone else to put it away), and it doesn’t bother me. Obviously I am stepping over a few other things as well…starting to bother me. When such heavy focus is needed in one aspect of our lives, we cannot always address these other issues. Eventually we will eat the chocolate bunnies and pick up the DVD…
However, I really don’t like things growing inside of my child’s brain – I am so happy that it will soon be out!