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[…]
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[…]
So you know that whole no news is good news thing . . . not always true. Her tumor responded well. It actually shrunk. But . . . buts are never good are they? More grew. The blood started pounding in my ears. This feeling..this pressure and sound in my head has only happened twice now. On her birthday when we got the prognosis . . . and yesterday. Its like the my ears are pushing outward . . . trying not to hear what they are hearing . . . and my throat closes . . . clenches up trying not to swallow the information being forced down. I know at least one on her frontal lobe . . and sugaring on her spine. Her dr. a pediatric nero oncologists…said its one of, if not THE most aggressive cases she has seen. fuck I asked if it changed prognosis . .[…]
Sitting here I know I want to write…but there is so much…I almost feel like I have writers block. My sister and I talked yesterday about how fast things move…How if we don’t talk about something immediately time marches on and we miss our time to talk window since there is always something new to talk about. This blog is my outlet…my safe place…At yesterdays appointment my sister took JLK out of the room and her dr “scolded” me. Asking if I got out and did things for me? I laughed. Not just because there is nothing I want to do other than be with my kids and husband…but because its kinda how I have always been. And some things about ourselves we cannot change. The whole trip was covered by MAW even money for souvenirs, but I still was me and totaled receipts every night and paid attention to[…]
She made a wish…all of us together with Disney. It came true. Too much to write about so I will try to share with pictures. I have lots more coming. One of the many, many amazing things Make A Wish/Disney does for families is we get a free photo pass. So all those pros there that take pics…we get a cd of those!! I did a pretty good job of living in the moment…putting the camera down….So many memories. I hope to blog tomorrow about it…just to write and see where it takes me…But here are a few pictures to share our trip.
Sometimes I find the changes we suddenly face so hard to swallow… Tomorrow we leave for our daughters Make A Wish trip. She loves Disney…so going to Disney World will be amazingly fun for her. But I think thing she is most excited for is being with our whole family together for the vacation. Our kids…they fight…they are after all siblings. But they love each other so much too. Jonathan insists that he be the one to push her in her wheelchair. And Jennifer seems to really like it. Of course I do too! Something got Jonathan sick on Friday night…and Tony a bit sick last night (but he is sure its food). Honestly though we have no way of knowing if the rest of us might get sick on the trip. We are a “rush” trip. Meaning her drs felt that we needed to go January at the latest[…]
I had planned to blog tonight. But one of our boys has a stomach virus. So in the interest of health I am planning on a early bedtime in preparation for the messy battle ahead. Just wanted everyone to know we are well and still hopeful that we will leave for our Make A Wish trip to Disney World bright and early on Monday morning as planned.
This weekend we had a very special wedding. Our Fairy became a MRS. I will blog about it more when we get some pictures of it all, I cannot wait to share it! But JLK was a flower girl as was Baby Charlotte and our boys ring “bears”. Couldn’t have possibly been a better day! Here is a shot Tony snagged! Today was my first real mom day since all of this started. Getting the 2 bigger kids to their schools and feeding, cleaning, settling disputes all on my own. It went better than I expected! But it was so hard to drop them off. I feel so unsettled being away from them now. I have this overwhelming desire to keep all of my “duckings” close to me. Thankful for good friends who miss gymnastics to let me come over and stay somewhat sane. But[…]
It feels like so long since I have blogged. I uploaded (or down loaded not really sure the difference!) pictures from my camera yesterday. I looked at them today to remind myself what I have been wanting to write. As life happens I think to myself how I want to write it…and explore it. Coming home has been quite the transition though. Not much day to day life more-so wonderful memory making time. It started with Christmas and then what we call Scharrenberg Christmas and then Disneyland…home to New Years Eve and lice!! eek (although not fun…another life experience with my girl in the books) I thought today as she was getting de-liced that one day when the boys are in school and a lice outbreak happens somebody who doesn’t know might say I am lucky I don’t have another daughter since its harder with girls hair…I am already thinking of[…]