Life can change in an instant. When you've got your health, you've got everything. Never say never.
Clichés, yes, but nonetheless, true.
I've been thinking about those sayings during the past two months since my 5-year-old daughter, Ellen, was diagnosed with leukemia. The first one often comes to mind when I'm explaining to people about how we found out she was ill, that we took her in for what we thought was a cold she couldn't' shake and learned she had a life-threatening condition.
One minute I was chatting with my hair stylist about my family's summer vacation plans, and the next minute I was trying to process a call on my cell phone from Ellen's doctor who was explaining to me that the results of the blood tests he had ordered for her earlier that day showed her blood counts were disturbingly low.
The next few days were a blur as we spent the majority of our time in the hospital where Ellen underwent more tests and blood draws and had surgery to put in a port so she could start her chemo treatments. In between comforting her and trying to assuage her fears about blood draws and intravenous chemo treatments, nurses, doctors, social workers and clergy talked to us about Ellen's illness and about how to cope with it and to care for her.
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It seemed impossible to us that the same little girl who had, just a few days before, been riding horseback now was hooked up to a tangle of tubes attached to a monitor.
Coping
The reality of her condition really hit home, though, when Ellen was released from the hospital and my husband, Brian, and I were responsible for her care. It was like having a new baby all over again as we dealt with the uncertainty of whether the symptoms she had were normal or not. We solved that problem by doing the same thing we did when our first child was born and called the doctors and nurses if we were in doubt.
In the two months since she's been home, we've become more comfortable caring for Ellen and in our ability to discern when things are serious health issues. For example, if her fever climbs to 100.5 degrees, we know we have to call the hospital and that the staff will tell us to come so she can be admitted to do tests for infection. On the other hand, if she breaks out in hives or has a mildly sore tummy, but no fever, we can monitor the situation and no trips to the hospital are necessary.
We have been admitted to the hospital for one to two days three times since she came home after her initial stay. In between those times, which happened on consecutive weekends in July, I realized the accuracy of the cliché about health. No longer do I take it for granted when our family can just stay at home, work, play and spend time together. The trips to the hospital have given me a taste of the stress that families undergo when one of them has a serious illness and periodically must be hospitalized.
It also has made me realize that looks might be deceiving. Children and adults who appear healthy may be dealing with serious physical or psychological problems. That gives me renewed resolve to be compassionate and to not judge them if they are exhibiting behavior that seems questionable. The behavior may be the reaction to emotional stress or physical pain that I can't see, but is very much a part of their lives.
The reality
Not only does an illness affect the family member who is sick, but also others: parents, siblings, grandparents, aunts and uncles and the rest of the extended family. For example, when Ellen is hospitalized our sons, ages 11, 9, either must go with us and be confined to a tiny room or stay at friends' houses. We've mostly opted for the latter and are grateful for the many kind families who have offered Brendan and Thomas a place to stay.
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The potential for Ellen to get an infection that will require hospitalization is always present and makes living in the moment a necessity. Not only can we make no plans for the next day, we really don't know from hour to hour, even minute to minute, when her temperature might spike. One Saturday night she was watching the end of a movie at 10 p.m. when my husband, Brian, noticed she felt warm. An hour later we were in the emergency room in Grand Forks waiting for antibiotics.
Those trips to the hospital are sobering and scary. When Ellen is home, playing and teasing her brothers, I sometimes can get lulled into a sense of false security and forget that she has a cancer that children have died from. Her hospitalization is a reminder that her health is tenuous.
A long time ago I learned the wisdom in the old adage about never saying never, yet I can truthfully say that I never thought one of my children would get leukemia. And I hope that this chapter of my life will teach me to never again take life for granted.
