Tag: Diffuse Intrinsic Pontine Glioma

…but she is

I find myself back to a place where I have a longing for my nights to come and write. I don’t know if I am in a transitional period or if it is just a hard spot for me right now. I am brimming with emotions lately.. anger and sadness.. and a sharp desperate ache for my Jennifer. I have prayed a lot lately. Constantly talking to God, just walking out to the garage to grab a  bottle of juice I speak to Him. I ask for help.. . Sometimes its unbelievable to me. .. how I can feel so mad at Him on one hand .. yet still closer to Him than I have ever been. I know heaven is real. I know this isn’t the end.. but I just get so damned scared. And so I write … I release those fears through my fingers.. and then somehow am[…]

warrior

Warrior. Warrior mom. Warrior child. It’s a badge given to cancer families in this world I am slowly becoming accustomed to. It has always felt uncomfortable.. awkward for me… I wasn’t sure why. . I just have always known Jennifer wasn’t a a warrior. She was a barely 6 yr old girl who loved to hide from her Daddy when he came home from work and then jump out to surprise him…a little girl who snored like a grown man but always denied it was her. A brown eyed beauty who truly believed in the magic of a princess.    I don’t think any of our DIPG kids are warriors really.. .I think they are more like sitting ducks. Being picked off one by one. I am angry. I wrote awhile ago how it wasn’t a fair fight for her. And I realized this feeling is just an extension of[…]

Flutter

This idea came to me at my sister’s house. She had a neighbor whose house had been “flocked” with all of those pink flamingos on the front lawn. I thought what a great concept to raise awareness for pediatric cancer … Then it happened to me and I found out it could also be utilized as a fundraiser. I am proud to introduce… FLUTTERING Dragonflies live relatively short lives but live it to the fullest.. making an impression wherever they go. Jennifer’s nursery as a baby was decorated in dragonflies and they have always been our symbol for her. They seem to zoom all around until they are over the water, one of Jennifer’s favorite places to be.. they hover there.. wings fluttering.. You can’t help but stop and look at them. We are hoping you are able to help some dragonflies flutter in the month of september to make a lasting impression. For a $25.00 donation, we will send you a fluttering kit, but your time[…]

gift

This experience has showed me the goodness in people. We are so grateful for all the love and prayers, the monetary support and meals being delivered to my men folk back home. I am trying really hard to help JLK see how lucky we are and to teach her to find ways to pay it forward. Its hard to do though since I catch myself wondering why? I am no longer raising her to be a productive adult or a good wife. I want to give her only yeses. It has been brought up that maybe we should send her back to kindergarten after treatment. As a way for her to know she is ok and not be scared that we aren’t making her go. Not gonna happen though, both since I am selfish and I cant imagine not being with her….(that make me pause knowing I am going to[…]

Gift

We just received a check from the PayPal account from a list of all kinds of people. It was actually kind of fun to read it together and talk about how we know them. We will be using this gift for lodging and food while JLK gets her treatments. It removes a huge burden for us. I also want to share how very difficult this portion of the journey is for Tony. He is struggling to be able to accept these extreme acts of generosity. My husband is an amazing provider both monetarily and emotionally…I think he struggles with not being able to do it all. So I appreciate this even more if it can lessen the burden on his already heavy shoulders. Thank you.

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[…]