Gracie was diagnosed with a very rare form of cancer. If you look it up on Google it says “Malignant rhabdoid tumor (MRT) is one of the most aggressive and lethal malignancies in pediatric oncology”. And unfortunately as much as I try to not focus on the “rareness” of this it’s very hard to do. When you’re in the business of rarity you don’t shrug things off and are most often in a state of worry when things just aren’t right. My friends and family can vouch for this! Our son, Luke caught the stomach bug for the 4th time this year. Each time my anxiety growing and with this last time a call to the doctor.

Gracie and what happened to Gracie is always on my mind. When I’m alone, cooking, driving or reading a book I sometimes realize I’m not focused on anything, nor seeing or hearing what’s in front of me. It’s in these moments that I’m fully thinking of Gracie. Her smile, her touch, her cuddles can quickly turn into the loss, the horrific disease that took over her body, and the emptiness that fills my heart. It’s moments like these that my body tightens and I feel powerless. These moments come and go and have changed the way I look at the world and how I deal with certain situations.

It changes the way I deal with and analyze any sickness or symptoms in my family, friends, and especially Luke. I have a hard time saying “It’s nothing, it’s just the bug”. For weeks I knew there was something wrong with Gracie, but we all kept thinking she’d get over it. And when she didn’t and her diagnosis came we were introduced to the business of rarity.

So when Luke has “the bug” and it’s centered around his belly and we have to have blood tests, x-rays, and ultrasounds- I panic inside. I feel his belly for masses, ask the dr. privately if there’s something really wrong… all along thinking something rare and really bad already happened to my family. But knowing this does not make us immune from another rare thing happening again… even though the dr.’s at CHOP biopsied Gracie’s tumor and her cancer was NOT genetic (good news), it doesn’t take the worry away. I hate thinking this way. But I know it will always be there. I know I have to be reassured and I have to go with my gut feeling to get things checked out.

Before Gracie got sick, I didn’t realize how many families were going through what we were going through. It’s strange how something like this was so far away from us our whole lives and now it’s everywhere. With the foundation we have started we hear these stories daily and try to help families in need. It will always be around us and we will be here to help for as long as we can.

This rare business has also led me to something that’s very hard to do. One of the hardest things in the world is asking people for money. I’m sure you hate it and I do too. It’s major fundraiser time for the Golf Tourney and the sponsor, donation and player letters have gone out to contacts, as will lots of facebook notifications. I ask you to give, I ask your friends to give, I ask you to come to the golf tourney, dinner, auctions, like our facebook page, buy our chocolate bunnies, and don’t forget about the Night Of Grace…..the list goes on and on. There is a large part of me that wants to hide when I have to ask all of you to help or donate. It’s hard to put yourself out there and my deceased daughter out there on display, but I do it because it’s the right thing to do. I do it for Gracie, I do it for the other babies, children and their families fighting this battle. It’s just part of the rare business we’re in.

As for Luke, he’s in this rare business too. Not too many children had a sister for a few years and then have to keep growing up without them. He comes out of nowhere on a daily basis with “I wish Gracie didn’t die” or “I miss Gracie” or “Why did Gracie die?”, along with questions about situations he’s starting to remember like “Why couldn’t Gracie go in the pool with us, mom?”. He’s getting to an age where he’s trying to understand more of what’s happened and these questions come at the weirdest times! I’ve just started realizing that Gracie may be on his mind as much as she’s on ours. We were getting ready to go to the doctors about this stomach bug he has and he says “Mom, I hope they don’t have to cut open my belly like they did to Gracie.” Of course I reassured him that was not the case and that was not going to happen, but in this “rare” business were in I was secretly thinking “me too”.

Luke is on the mend and we think it really was a very nasty stomach bug! My anxiety is starting to decrease (thank you family and friends for putting up with me!). Our family will keep moving forward and continue to help others until a cure is found~ and we hope you will help us <3.