At this point Sara's had so many tests that I can't keep track any more. She's been under sedation more times in her 3 short years than probably most of my family combined. And yet again, I sit in the waiting room at TCH while Sara has her 6 mos MRI scan.
We scan Sara every 6 mos to track the growth of her tumor in her pelvis; the one that has caused her to have her urosotmy and has the potential to cause huge problems with her kidneys and spine. If it is growing at the same rate as her body, not getting any bigger in proportion to her body, we call that stable. If it's growing faster than she is, then it is growing because it is continuing to take up more space which she needs for her kidneys and other organs. The hope that it will stop growing all together are remote since the tumor uses the same growth hormone to grow that her body uses to grow.
We did the last scan in late January 2010, and her tumor showed it was stable at that time!
I've become a pro at passing the time sitting in these waiting rooms, and the free WiFi is a life saver. I've read tens of thousands of pages of hundreds of books by now, and no matter what you do your brain is never far from what is going on around you. Lots of times I'm so tired or overwhelmed that I just sit and watch the people and kids around me.
Some days as I watch I feel down and wonder if those parents know how lucky they are that their child can walk, talk, and looks relatively health. Do they take for granted that their child can wear shoes, and do simple things like jump and run? And some days I notice the cases worse than Sara, and I sympathize with those parents that they will never see their child do what "normal" kids do...like even make it to adulthood. Sometimes it brings me to tears to think about it, but it is a reminder of how blessed I am.
I'm reminded every time we go to NF clinic that Sara is one of the worst cases they have, but it could still be MUCH worse. Sara's life is not in danger currently. She has no tumors near her heart, lungs, or brain. People live relatively normal lives in wheelchairs, and that she won't be missing out as much as I worry she might.
This place is more than somewhere I bring Sara for appointments and tests; this place is a reminder of all the things that are good in life. Caring people, loving families, life's ultimate blessings, and much more! For me this place is a second home, and a place where I can reflect and process what is going on in my life. This place is my sanctuary; its quiet, I can think, and I know that Sara is safe here and receiving the best care possible. I know it seems strange to find peace in a hospital of all places, but that is exactly what I have found here in the past...and continue to find here each and every time.