Support for Those Living with Adrenal Insufficiency

Just an Average Kid

Written by Jennifer M.

I asked Lily if she wanted to write something to help others learn about Adrenal Insufficiency and she said- Like what?  I told her to just write about what she felt and what she had to do because of it.

-2

 

 

“If I get sick, I have to have a shot and 

go to the hospital. Then I miss school 

and my friends. It sucks.”

 

 

 

 

Sometimes it’s really hard on kids to be different. When Lily was diagnosed with Adrenocortical cancer in 2008 – we just wanted  her to live. We knew nothing about adrenal insufficiency or what long term care might mean because we were just hoping to get to face those hurdles with her for many years to come. After living with AI for the past 4 years- I definitely wish I would have known more about it going in. It wouldn’t have changed our treatment plan- but I think we definitely could have avoided a couple of the adrenal crises we have faced. I didn’t even know the first few crises she had were in fact due to the chemotherapy killing her adrenal glands- we just assumed the side effects were from the chemotherapy. After she was off chemo for a few years, she had a bonafide crisis and it felt so familiar.

We try to treat Lily like an average kid, but one with special medical needs. She wears her medical ID because we can’t be with her all of the time. She knows what it is and why she wears it. She  understands that her body doesn’t make certain hormones and that’s why she has to take medication every day. She knows she is different but that with the right medication and care, she can do anything she wants to do.  The other day she came downstairs beaming because she had reached her goal of being  100.0 pounds and guess what- she beat it she is now 101.0 pounds. One of the fun side effects from taking steroids- the never ending appetite. We focus on healthy eating and exercise, knowing that tapering the steroid dose is not an option. She is officially off the weight chart for 8 year olds.  As a mom I worry to no end- is the steroid dose right, is the cancer back, is she getting sick and need a stress dose?

I fought with school boards who did not want to allow her solu-cortef to even be kept at school or administered. We spend hours at a time in the endocrinologist’s office, she gets poked and prodded to make sure we can keep her healthy. Every day she takes medication and her moods ebb and flow with the concentration. So we tweak things here and there to make it work. She had her first sleepover at a friend’s house which was a huge milestone for all of us. Most parents sleep fitfully during this time, wondering if their child will be lonely or sad. With Adrenal Insufficiency- you know that when illness strikes or if an injury happens- 20-30 minutes is too long to wait for Solu-cortef. But as parents we keep fighting for our kids- so they can have a long, healthy, happy life despite living with adrenal insufficiency. Organizations like AIU are a blessing- helping to pave this road we are destined to travel. Making the journey less lonely and a lot easier.

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