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May 05-11

This Week

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Tonight as I was putting Jack to bed he was a bit restless. For a minute I was frustrated and then he said “Mom, will you cuddle me?”

In an instant I was quickly transported back to the endless nights we spent with him in hospitals where it was only our embrace that would help him relax and fall asleep.

I obliged and within minutes he was sleeping soundly. I remained there for a while. I hugged his body as I felt his chest move up and down. A few tears fell from my eyes as I allowed myself to think about everything that little body has been through.

Jack is doing so well. He just finished first grade and had his first swim meet of the summer season last Wednesday. On Thursday he completed the last round of his two month long putt putt challenge and he finished in second place (he was disappointed he didn’t win, I don’t know where that competitive streak comes from 🤣). 

He had clear scans in April. We are ever grateful to his treatment teams for the work they did to get him where he is. As Dr. Batra, his oncologist at CHOP, told us when she saw him when he relapsed, what they did was as much an art as it was science. She guaranteed nothing. Told my brother in law that she would do her best, but that his odds were less than a coin flip.

Here he is. The side of the coin that was less likely. This is never lost on us. We just passed the anniversaries of two children we knew whose fate was not the same as Jack’s. There is honestly not a day that goes by that I don’t think of the families that we know who are not able to cuddle their children tonight.

The time passes and we continue to focus on the positive, but we always have the what ifs and the what could be on the horizon in our minds. It doesn’t consume us, but it keeps us on our toes. Jack had a cough for more than 8 weeks this winter/spring. I’d be lying if I said that Mike and I didn’t have conversations about whether or not this could be the cancer that doctors warned us about returning, in his lungs. Thankfully, his scans were clear and we took some deep breaths as we drove I-95 home from Philly.

Tonight at the pool Jack stood next to a sweet friend. Also a recent first grade graduate, and a cancer survivor. They compared scars from their ports.  Jack also showed his blue tattoos (from radiation) while his friend shared his g-tube scars. It was a humbling and joyful moment. 

Sometimes where we’ve been seems like a fog. Yet, it has created such clarity for what we know is important day to day. We aren’t perfect and do get bogged down in the minutiae, but those scars, those tattoos, they help bring us back in the stickiest of moments. 

As anyone who has been in cancer land knows, once you visit, you never forget the experience. We don’t have to get as many pokes or tests. We don’t have the level of fear we once had. But, we are aware of the reality, and try to embrace what we have had to stare in the face.

We celebrate the moments. We give ourselves grace when we do get frustrated. And we say yes to every request for cuddles.

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