Chemo times 2

Some of you have asked about my kids being on chemo. They don’t have cancer, they have juvenile arthritis. JA can cause excruciating pain and deformalities, steal childhoods, bankrupt families, destroy marriages, cause blindness, and even kill. Although for different reasons, the difficulties my family has faced are not unlike the problems of cancer families, but without the public awareness.

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The public’s knowledge and perception of cancer and juvenile arthritis is a touchy subject for the JA community. We know that arthritis can be just as life altering, if not as deadly, as cancer. We also know the general population is not aware of the similarities. It is hard to educate without sounding like whiny, self absorbed divas who want special treatment for their kids.

While both diseases have periods of remission and risk of recurrence, one way or another cancer treatment usually has an end. For many JA patients, treatment is a never ending battle. I have heard heartbreaking stories of JA children who shared infusion rooms with cancer patients and constantly asked their parents when it would be their turn to ring the bell announcing the end of their treatment. For them there is no end.

The mortality rate for cancer is definitely higher. I am thankful that I have not watched my child deteriorate, knowing there would be no recovery. My heart aches for parents who have lost a child. Even in remission, recurrence is a continuing threat. Parents of JA kids in remission have that same fear.

A friend of mine shared recently that her daughter was in remission. I joked that she was asking for trouble. A few days later she was back at the hospital. I felt bad, like it was somehow my fault, though I knew it wasn’t. That friend doesn’t blame me, but the pain is still there. JA parents hurt when one of “our” kids suffers, and we rejoice together on good days.

I won’t pretend to understand what it is like to have a child with cancer. But I do know what it is like to have a child in ICU, their sibling wondering whether they will recover. Both my kids have lived that hell on earth.

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What college do you go to?

My daughter just got back from getting the oil changed in my car. My 16 year old daughter. She told me about a young man who struck up a conversation with her. He started with her Texas Rangers shirt, eventually asking where she attends college. Did I mention she is 16?

She is quite a beauty. Inside and out. After what she has endured in her short life I’m not surprised. Her parents divorced, her brother has a chronic illness, she has anxiety, her mother (that would be me) and brother have ADHD and she lost 2 of her grandparents in a couple years time. She is hypersensitive and hypermobile. Translation: she can taste medicine that is supposed to be covered with flavoring and has super loose joints. Her sense of smell is also very acute. I feel sorry for her if she ever gets pregnant and has to walk near the meat section of a grocery store.

For now I will enjoy having her at home, still volunteering to run my errands. I know that all too soon the college question will have an answer.

My baby girl

My baby girl