Will's Story: Parent's Letter Project Eosinophilic granuloma- Will's mom

Will is our first born. He was born in 1999. He was perfect (aren't they all?). Just shy of his second birthday, he had surgery at Children's National to remove a benign cyst. What we thought was a benign cyst was really eosinophilic granuloma (EG). I remember everything about the day, that day that changed everything. It was the day everything changed.

We were set up with a team that included a neurosurgeon, a hemo/oncologist and a researcher. We spent many days at Children's while Will was being examined, tested, retested, and treated. It was exhausting and scary, and quite frankly, irritating at times. Nothing happens as quickly as you think it should. Lesions don't disappear during the first treatment like you think they should. The disease doesn't understand that you've learned all you really wish to learn from this experience. The disease also doesn't seem to understand that remission means it can't come back! Unfortunately, it's just not that way.

The interesting thing is, you do learn, but not at first. I am not a big believer of the "everything happens for a reason, so let's find the good in this" theory. EG stinks. So, in the beginning, just let go and feel. Be afraid, be sad, say "Why me?" over and over again. It's okay. Don't go on the internet and look it up (that advice was given to me by our hemo/onoclogist and is excellent advice). 

The lessons come. The first one is that life does, in fact, go on. The difference is now you have a whole new appreciation for everything. Going out for pizza is a cause for celebration! Lazy day at home? Celebrate! First day on a sports team? Wahoo - celebration (all the other parents will laugh at you, it's okay). The second lesson is that you don't have to share your information with everybody. In the beginning, I told, because I was scared, and I needed people to know. Will is old enough now that when the EG came back (curses!), he decided that he didn't want people to know. The third lesson was the most important for me. I learned what it really meant to be grateful. I was grateful that this hospital was researching this disease when Will was diagnosed. I was grateful that we had excellent care that contributed to Will's comfort during the treatment process. I was also grateful that there are programs that I was able to become involved with that helped Children's. It made me feel like I was doing my part. I was grateful that every time we took our precious boy to Children's National, we brought him home with us. 

No matter how you are feeling, know that it is okay. You have never done this before. It gets better. Know this, you are strong enough for this. You'll be amazed at how strong you are, and at how strong your child is. Will is almost 12, and he's battling EG again. He will beat it. Will is still our hero.

Sincerely,

Will's mom (and biggest fan), Amy

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