Tag: cancer treatment for a child

Research and family

  *ahem putting on my unravel Libby hat *  I was honored to get to be part of an amazing and inspiring conference. It was host by PBTF (pediatric brain tumor foundation). I was in the company of around 10 motivated foundation founders and 71 brain tumor researchers. It was humbling to say the least, to be by far the least intelligent person in the room.. but also super educational – I even tried to figure out how to make that sentence sound smarter.. but thats the best I got- We heard about immunotherapy and clinical trials. I was introduced to a few incredible researcher led programs, which was so invigorating to see them helping further another scientists work to be successful. It means one winner in the end. Kids fighting cancer. One of these programs is organizing big data to strengthen others ability to run their investigations. And another[…]

atta girl Jennifer..

This blog all pertains to this interview we recently had .. please watch if you haven’t. 4 years too late for her. There is more weight to those words than any others in the entire interview for me.. Because I am human.. because I am her mom. and its all 4 years too late for her. .. 4 years too late. That’s because I am her mom.. and I struggle to not see things through those lens. But if I step back. And I remember my little girl I know also. she will wait forever she will fight forever.. Because that’s who she was.. and by donating her tumor.. By raising money to fight DIPG.. we are still letting that be who she IS. She did not lose her battle.. because she is still fighting. I often get caught up in a vicious spiral.. wondering who she would be. What[…]

forget

I look at her picture. And I want to grab her out of it. To feel her warmth again..I just want to grab her by the shoulders.. and shoulders. .. her shoulders .. remember oh God.. please don’t let me forget.. her shoulders .. my hands could perfectly cup them. If I moved my thumbs inward I could feel that bony bump right there.. They curved in slightly.. I think . ..I think she hunched just a tiny bit. Oh my God. Is that her? Or is it Jonathan? please .. oh please. jennifer. no. no. no. its like i am losing you again. Piece by piece she was stolen. And now it happens again. As I struggle against my own brain to remember her. Its like a grainy cell phone picture.. We have tally marks on the wall for the kids heights. I walk past and will touch where[…]