Tag: Lucille Packard Children’s Hospital

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[…]

..3 years ago..

I feel weaker… more run down than I have the last 2 anniversaries of this … this date, this message stolen from FB.. “After a bit of a whirlwind Jennifer was diagnosed with a brain tumor. We are home now. On Monday we will go in after the team has discussed her case and come up with a game plan.  I will set up some sort of a caring bridges or something site. For now though my older sister Ann and Renee are my “word spreaders” But please know if you want to call or text feel free. If I cant or dont want to answer I won’t.  Tony Kranz would prefer a little more silence on his end. Our number one concern is all of our kids. So if you see them please just be normal and smiley with them. And remember even though JLK is the one with the medical diagnosis all of our kids are[…]

swipe

My mind wanders.. a lot. I have always been a big day dreamer. Its actually one of the reasons I have always enjoyed working out. Its a time to just let my mind and imagination run free. But right now .. even though our california weather is not very fall like I seem to remember. .. I am fighting my day dreams now.. I am finding myself crying nursing Bridgette in the middle of the night when I can’t escape my mind. .. memories. They are flooding me right now much more often.. Of her being sick. Of her treatments. Its hard to get a grip on them… They seem to move through me so quickly.. Like snippets of videos of her. I hate that. That my memories of her don’t seem real right now, they just feel like … like I’m watching her not through my own eyes but[…]

nano course

I was invited to this thing called a nano course here at Stanford. Its a small invite only week long conference. The basic idea is to train some parents/foundation people to be liaisons for the medical community. What that means is much of what I was taught went over my head!! Some easy take aways I can share now ..  A lot of the stuff we learned wasn’t specific to childhood cancer.. but translated to all cancers. Like a 3D gel that can mimic tissue better than other mediums. .. a big step up from a petri dish, but more accessible than a animal model. The head of that lab was so jazzed and into it. It was pretty remarkable to see. That leads me to my next easy take away. There are so many cogs in this machine. We heard from multiple different heads of labs. That are all[…]

Diagnosis Day

I’m Jennifer’s auntie and Elizabeth asked me to get this site up and running. First of all, Tony and Libby want to express their heartfelt and deep gratitude for all of the love, prayers and well wishes that have been pouring into them from everywhere. They are overwhelmed with gratitude and amazement at all of you! However, they are currently unable to receive visitors or calls at this time. That will change but for right now, they just need to process everything that they have heard. If you need something or have some information that you think that they could use, feel free to contact me, Ann Scharrenberg Calcagno, my mother, Mary Goggin Scharrenberg or Renee Ridgeway via facebook as we are all on there. So today JLK, Charlotte and their parents met with the Tumor Board at Lucille Packard Hospital, where they were told that Jennifer has a brain[…]