Tag: DIPG

help

World cancer day was yesterday. The old me. . . I would have posted about it. Said how horrible cancer is. Read a few blogs or stories. I would promise to do “something”….tomorrow or after the kids get up from naps. Feeling a bit cleaner and like I did my part. . . . and that would have been a lie. This is not to put down anybody else. I know for many other people yesterday was a spark to action. But I can tell you for me. The 4 month ago me. . . it wouldn’t have been. The new me. . . I live it and will continue to live it. . . as is so well expressed by a father and husband of a new found friend. . . here. The new me is making preparations for when my daughter dies. . . to get her tumor[…]

click

…click…click…click You know that sound a roller coaster makes. This is the sound track to my life. . our lives. . right now. Last night I was almost euphoric. I was pacing around after she ate. Waiting to see if she threw up. She went at that applesauce with such fervor. . such hope. I stopped her from eating too much. I left the room for 10 mins and when I came back she knew her body didn’t want any more. Tony offered her more multiple times. But her body said no and we listened to her body. We ate dinner together and talked. Tony commented how strange it was to be talking about burial and tumor donation over pasta with no tears. . . just normally. I cannot explain how hard it is to see your child not eat. Day after day. To have all of the bones in[…]

all night

My blogs are going to be short. And probably not every day. I just feel like I need to give a warning of that. Each day is so long . . .normally that would be a complaint. But I am thankful beyond explanation for each moment and each breathe. She was up every hour last night. Struggling to urinate. She bears down and shakes with how hard she is trying. . . its so heartbreaking to see her fight so hard to do something that should be simple. . .that just a week ago was so simple. One week ago . . was it really only one week ago? Last Sunday night was the last we went to bed hopeful . . it was the last night before the new prognosis. Next Sunday I will likely be lamenting this one. I think she will already be gone. my baby. no.[…]

plea

She ate a popsicle. She loved it. And she slept. A lot. She had one good 5 minute wakeful period and all 4 kids got to be together opening a gift bag that had been dropped off for them. It was bliss. And this is what I did. I have no idea if it will make a impact. But I mean what I said. I welcome any member of our government who would vote no to equal funding to come into my home. I am just getting started. . . my plea Please watch and share everywhere you can. And harass the hell out of people you know that don’t share. I appreciate so much how you are all in this with us, but I hope you stay with me . . . with us . . .even after my writing changes from our day to day horrors of loving[…]

light

We tried the new meds. I talked to Jennifer about trying to eat even though she was scared. She was so excited to eat. Her eyes sparkled as she took those few bites of chocolate gelato. Then she vomited again. I felt her collapse in my arms. Defeated. Tony cried with her. A pure outpouring of love and an ache for his daughter. It was beautiful and touching and heartbreaking. I rubbed her head and we “talked.” She couldn’t speak, so I asked questions. She would squeeze my hand to answer. She is scared of what’s happening to her body. I talked to her about it. About our goals for her care. About how it’s OK to be scared. I told her I’m a good mommy; I’ll always take good care of her younger siblings. But that she will always be the one that made me a mommy and I[…]

Angry

Today was hard. Will I ever not feel that way? So much of today was spent talking with nurses, pharmacists, and thankfully our great docs. Her oncologist from Stanford cried with me today. I don’t do that. I am a private crier. I have a need for Jennifer to eat, at least one more time. She might regain some of what she lost. She is hungry, but scared to eat. So tomorrow we start fresh to try to get on top of this awful vomiting and nausea. I hope to get her to eat. At least with this new plan I’ll know I did everything and didn’t just–this isn’t the right word– “quit.” She hates meds by mouth. Always has. So tomorrow we try a new path. I know it’s only been a day, but when time is this limited, when a tumor is this hungry and fierce, a day[…]

chosen

Today started beautifully. She called for me in the middle of the night to bring her into our bed. I happily did. We slept like we did when she was a baby…wrapped in each other. I breathed in her scent. She rubbed Tonys head and face and pulled him into her. She held her baby sister. She even drank some water. Tony brought her the radio he bought last night and she loved it. Then we headed to Palo Alto.   I am going to cut to the chase. Tonight I need to be with Tony and he needs to be with me . . . but we agreed to update on here. We belong to each other . .   What I posted about new tumors wasn’t exactly right. Its not brand new different kinds of tumors in her frontal lobes . . . Its a progression of sorts[…]

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[…]