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May 19-25

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I took a long walk by myself on the beach Sunday morning. As I got lost in the sound of the waves I was reminded - violent waves, churning sand and rain give way to calm seas, sunshine and peace. Salt air heals and revives the soul.

The past three months have been long and challenging. Trying to get energy back during the grey doldrums of winter mixed with grief was a battle I wasn't winning. The recent nice days and sunshine have helped immensely. 

In January, I saw Dr. Raj for my 1 year follow-up. While radiation oncology was feeling confident moving to MRI's every 6 months, Dr. Raj insisted we repeat every 3 months for at least 2 more years.  Dr. Raj saw everything that was in my head and my nerves. He's still on high alert. He removed the nerves that gave me the ability to feel something was wrong when tests showed nothing was there. I trust his instinct to be extra cautious, so we moved my MRI from April to Feb. Over the past week, I saw Dr. Sobanko, Dr. Lukens and my renal transplant team.  No cancers to cut out, all is stable. We are feeling good, breathing a little easier.

Steve and I are living in the in-between. Creating memories and living the most positive life we can. But, I'm living with cancer. We aren't in the clear.  I can see the worry on his face when I get a headache. I get anxious and overthink each time I find a new bump anywhere on my body. We've been reminded the past few months that tomorrow is not guaranteed - we know three young parents that passed suddenly or lost a battle to cancer. We know three spouses that had the impossible role of telling their child/children that Mommy/Daddy is not coming home and the heartbreaking work of answering that question daily. I'm here, this is what we focus on and celebrate. But, for the first time since this fight started, I'm finding I get anxious when leaving DJ or promising him "I'll be home". 

The first week in March I had my first, "Daddy isn't here", moment. I had the privilege of skiing with a donor & friend in 60 degree weather one morning. On my way home, I picked up my phone to call his office thinking, "he'll get a kick out of this". It wrecked me. It's the first time since Parkinson's took away the man he was that my brain forgot and only thought of "Daddy". Those were intense tears, hard tears but healing tears. The first week in April I drove some of Daddy's ashes to his hometown. With his brother and our cousins, he was laid to rest on the Tuscarora Mountain where he grew up hunting. I hadn't been back to his hometown in over 15 years. It was bittersweet driving home; I felt a heaviness for leaving him behind but peace for him to be "home". 

It hasn't been dark per se, but it's been heavy. 

So what do we do...our best. Take life one moment and step at a time. We went to see our favorite band, Shinedown, at Penn State. We planned 4 games to the Phillies and are planning a family vacation to celebrate our 5 year anniversary this fall. We get outside, we eat the cookies, we attend the parties and soak up the joyfulness of our friends and family. 

I am so incredibly blessed by the community around me. In fact, some my longtime donors/friends surprised me by nominating me for a Be The Joy surpise. This foundation works in Media, PA to bring joy, light and hope to community members. They started by giving tips to servers/bartenders during the pandemic and now spread their joy to individuals and businesses via the generosity of donations from community members. I was shocked, humbled and incredibly touched. My generous community gifted me tickets to Shinedown, Phillies, dinners out and, most importantly, encouragement. Steve and I used one of the gift cards in March; date night to celebrate the day we met 8 years ago. 

Finding the right professional to talk with is important. I've gotten connected with the team at Penn who specialize in working with transplant patients. I'm working on carving out more "me" moments. I'm taking breaks at work to walk outside and breath deep. 

I will never stop saying it. I appreciate everyone who is praying, cheering and reading. You have more of an impact than you could possibly know. 

Summer is my season. Sunshine is coming - I'm ready! 

XOXO Liz, Steve & DJ 

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