Sunday, January 30, 2011

Four Years. Seems like a long time, sometimes it seems like the blink of an eye. Four years ago today we found out Hannah had a brain tumor. I remember that phone call like it was yesterday, especially because recently Colby wrote an essay for class about Hannah. She was asking me questions about how they found the tumor, how long before she was in the hospital (the next day), and what happened after that. She was interviewing Hannah and me, it was like a quick jog down memory lane.

We don't dwell on the cancer anymore in our family. We don't dwell on any of that anymore, we just live our lives every day like all of you. Only, our lives have changed so much since that day 4 years ago. What we dwell on now are the daily struggles Hannah has. She beat cancer, to be left with the scars from that battle. Those scars aren't overwhelming, but they are challenging. Hannah deals with daily nausea and headaches. She takes pills morning and evening. The doctors have tried to adjust her medicine, and eating, and we're still working on it.

She deals with osteoporosis and low bone density which inhibit what activities she can do without pain. She has residual left sided weakness so her left foot is a bit slow and her left hand is shaky. She has balance and coordination deficits because her tumor was in the cerebellum, which controls motor function.

She has growth issues, although she is hanging on to the bottom of the growth chart. To Hannah, this is a big issue. She points out regularly that she is shorter than everyone else. Since her back isn't growing normally, she retains fat around her middle that other kids normally grow out of (or in to.) She asked me yesterday how she can "get skinny." She won't wear a two piece bathing suit or a shirt she thinks shows off her body too much. She cries. We can control this somewhat with diet and activity, but we can't stretch her back, we can't make her shoot up by a foot or catch up with her classmates and friends. Interesting to note that while this is a big issue for Hannah emotionally, she is 11 1/2 years old and wears a size 10, perfectly normal for her age, even on the small size. But what matters here is her perspective, and she is bothered by this. When we talked about this being her 4 year anniversary of the brain tumor, her answer was "another year shorter, another year fatter."

She has learning deficits and memory issues. Often times she will call us into her room at night after bedtime to tell us something, only to forget what it is she wanted. Now, this is common for Dave and I with our early onset Alzheimer symptoms, but uncommon for an 11 year old. School is hard for her. She is keeping up with her class, with modifications, but has to work very hard to stay there. Homework is difficult and often ends in tears. She says she's not going to 7th grade. She says-in all seriousness-she wants to be home-schooled. She told me just today that she would rather have an MRI than go to school.
And Hannah's emotions-well they are difficult for her and difficult for the family. There is a lot of evidence about children with medulloblastoma and how the surgery and treatment can change your personality. She has emotional outbursts, irrational fits, aggressive moments. It affects all of us, as Colby and I were discussing last week. It's difficult to live with it and always keep it in perspective.

But while there are the difficult struggles, there are also the rewards. Hannah cares deeply for others. If she feels someone is treated unjustly, she has to make it right. She is concerned with right and wrong and fairness for all. Her wit is still sharp. She is extremely committed to her Cans for Cancer program and loves organizing for fundraisers and buying toys and crafts for the kids in the hospital, all selected with extreme care. She loves her Hofstra softball team and always talks about baking something for them. For months last year in school, Hannah wrote in her planner every day "bake big cookie for Hofstra softball team."

Four years with such incredible support all around us. The support from our family, our friends and our new friends has been what has kept us going. We have met some of the most inspiring, incredible people, although this is not the way I would ever have dreamed of meeting any of you. Thank you all.

The surgery, the radiation, the chemotherapy, it all took it's toll. So while we don't dwell on the cancer, we live every day with it's effects. We adapt, Hannah adapts. She goes to school, she takes piano, she swims and she plays lacrosse. We all live our lives with our every day challenges, just like everyone else does. We survive, Hannah survived, she is a survivor. We are happy.

♥Kim