Category: diagnosis

waiting for the shoe to drop

A common saying I had no idea where it came from .. but its been chasing itself around my head the last few days.. So I had to find out .. according to wiktionary Etymology : A common experience of tenement living in apartment-style housing in New York City, and other large cities, during the manufacturing boom of the late 19th and early 20th centuries. Apartments were built, similar in design, with the bedrooms located directly above and underneath one another. Thus, it was normal to hear a neighbor removing their shoes in the apartment above. As one shoe made a sound hitting the floor, the expectation for the other shoe to make a similar disturbance was created. I was kinda the opposite of this. I honestly was walking around fairly confident in regards to my children there were no other shoes that could drop.. I have been more scared of[…]

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[…]

relapsed

I want to help. I want to change. I want to heal. I am selfish most of the time. Most of the time I hurt just for me. For us. For our loss. For our pain. ..but Unravel. We didn’t name it after Jennifer. We didn’t make it specifically a DIPG or even brain tumor research foundation. (although we certainly fund it) I have always known why. Always known it was because its bigger and more than just her. But today sitting outside of Starbucks is when my heart absorbed the reason. His name is Juan David. Just two and a half. Infant ALL. .. oh well ALL thats a “good one” right? Thats a easy one right? Well as sweet Elayna taught us there is no such thing as easy or good. The treatments are always brutal.. And infant ALL.. is actually not good. The percentages aren’t in their[…]

a napkin

**** sometimes I write posts and don’t post them right away. This is one of those written in August**** Trying to prepare for Jonathan to start kindergarten. .It forces answers a lot of questions and fears I have been lucky enough to avoid. But it seems to help a new crop of them bloom. We got out Jennifer’s uniform because its a unisex top and he wants to wear hers. It matters a lot to him. Once alone with these bright blue memories I held them to my face.. desperately trying to find a piece of her to breathe in.. I couldn’t. Tony did find a hair of hers.. We carefully wrapped around the button. I gave him 2 and explained the other 3 we would save for her other younger brother(s) and sister(s). **Bridgette not yet born I didn’t know if he would have 2 little sisters or little brothers.[…]

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[…]