Since my six-year-old son Jack was diagnosed with Leukemia in January, there have been both sweeping changes and little changes in our life. Some are harder to describe than others - some more subtle while others are glaring. Sometimes aspects of his personality that were there before might come out in a more noticeable way, or they might be more hidden, protected. Jack is still himself, of course, but the version of him we are living with now isn’t as steady or balanced. I often wonder how much of him is changing permanently because of this experience.
I’m not sure I can still describe him as a “happy-go-lucky” kid, for instance, which would have aptly described him last year.
Now his mood can change on a dime, and he is VERY sensitive. He is quick to cry, quick to anger, and quick to feel defeated. No amount of good-natured teasing is allowed. A simple behavior correction or disagreeing statement will send him running to his bedroom with a shout of, “I’m going away from you now!” If he gets angry, he’ll growl and even hit himself in the head.
After months of isolation from other kids, Jack is great at interacting with adults. Often it seems he prefers it; after all, adults behave less erratically than kids and are actually more likely to give him what he wants. Other kids require more negotiation, more effort to communicate, and a jumble of emotions, including frustration. What began as a preventative measure against illness has led to Jack avoiding socializing with kids if he can help it. It even takes cajoling to get him to attend a birthday party.
With that said, it can be difficult to interact with Jack due to his lack of attention span. He has so little focus. Questions must be repeated several times, and he needs constant reminders – within seconds of each other! – to get him to do anything at all. He is distractable, flighty, and more forgetful than ever.
He is still a prolific little artist and those abilities have not suffered, but any math he knew from Kindergarten has eroded (although we’re hoping this can be regained fairly quickly). Most 'processes' are difficult for him. His interest in reading has lessened, as well, likely due to headaches and side effects from chemotherapy. Since he is easily frustrated, he typically doesn’t stick with new things long enough to improve at them.
He’s been a fairly thin kid since he reached the toddler stage, but now he has ZERO muscle definition. He is skinny as can be – the baby fat is gone, too. His eyes are a little sunken with shadows, and his skin is so, so dry all the time. Despite continuing to go on hiking adventures with his dad, he is quickly winded with any activity – he no longer runs everywhere or challenges us to race to the door.
Not surprisingly, he eats like a bird (since the steroids were left behind) and his diet is limited. The full array of things he will eat includes: carrots, cherry tomatoes, cheese, salami, rice, grapes, apples, edamame, chocolate, waffles, pretzels, seaweed and milk - and he rarely finishes anything. No more chicken. No more fish. No more peanut butter and jelly. Definitely no yogurt! He’s even less likely than he was before to try new things, too.
It’s not all bad, and things could definitely be worse. Sure, everday things take longer, are more frustrating or have more serious or worrisome implications, but our life is not exactly lacking. Nevertheless, there is no part of Jack's life - our family's life - that has not been affected by all that cancer has brought in the last nine months.
I'm enormously grateful that Jack is HERE. I'm thankful that he can still smile. He’s growing, he’s learning, he’s still a spectacular kid. I can hold him and we can laugh and giggle together.
No matter the battle that is raging in the background and diverting his attention away, he is still my sweet, Scooby-Doo-loving, alien-impersonating, imaginative and fierce little boy. Cancer can't take away his spirit.
Crystal, author of Ewokmama.com
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