Tag: tumor donation

down the aisle

So I had my day planned.. . I was going to practice my speech for the upcoming MNO this weekend since I haven’t done it yet .. and then maybe carve out time to blog about how often people are surprised by my smiles.. and the joy they see in my family that is ALWAYS present.. …but Facebook had another idea for me.. Tony and I have talked lately about the love/hate affair we both have with the “on this day” option. The one that you can see old memories. .. moments that you shared a year.. or more ago on that day. Today scrolling through .. luckily after all the kids were at school or napping I was seized by the grainy image on my screen. .. with a caption of bitterly ironic words “not ready for this” Oh how I miss the safety of the sadness of watching my[…]

flash

flash.. Today it starts I guess.. flashes. Constantly. Of her final weeks. I feel like I am suddenly on the verge. Scared I am about to topple off.. Because I know its not a matter of it.. simply of when. But I can’t do this right now. I leave tomorrow for Seattle to give the amazing Dr Olsen a check from Unravel. Jonathan is missing school and coming with me. I need to not be a shell. .. So I hope by diving in.. and sweeping out the cobwebs of my mind.. maybe I can be more .. Because today was sudden. .. flashes.. moments.. horrible and beautiful. Walking down the hallway past what was Jennifer’s room.. now holding a sleeping baby that never got to meet her biggest sister. a flash that stops me.. Solid. I try to grasp and savor it. The weight of her.. How tiny she[…]

her Christmas gift

We woke up all with Jennifer on our hearts and minds… And as it turns out the feeling was mutual. My niece came over last night and saved Christmas for the second year in a row. She came over to wrap presents for my kids. Without her to talk with and to honestly do most of it I don’t know if it would have gotten done. It is so hard to not be wrapping for her.. So I just avoid it at all costs. As I fell asleep silent tears hit my pillow..  as I was helplessly wishing I could give her a present.. This morning the very first thing Nicholas did was ask my a question about sissy.. He was groggy, wiping sleeping from his eyes and asked if she used to wear boxers.. I was taken aback and at first said no.. but then realized she probably did[…]

small change

I have so much to do right now for Unravel. I am trying to get a few of my blogs selected in different contests.. a way to reach a new audience. We are trying to get a informational video ready and a new brochure and 2 MNOs and so many other things I should be working on. Including our Facebook page. But instead when I opened up FB to go to our page I first noticed there was post by my friend Heather. .. a link to her blog post about recent photo session she had done. You can look here.. I encourage you to look. Fall in love with this family the way I have.  And then get so angry. Because it doesn’t have to happen. I look at this mom. Who is now one of my close friends and my heart breaks. Because I know the ache she[…]

everything and nothing

I miss her today with all of me. I went for a run. It usually clears my head.. gives me space… But not today.  I am hurting. I remember so clearly 6 months ago. Calling my sister to tell her to come.. then not come.. then come. I wasn’t sure that we needed her… wasn’t really sure how close Jennifer was to her death. But I was afraid… so she came to us. Today I am angry. .. . at everything and at nothing. I remember thinking I could never hurt worse then I did right then. I remember thinking the same thing those first days after she died. Thinking I couldn’t ever hurt as much as I did then. I was wrong. So incredibly wrong. I thought the same today. I thought I could never hurt worse than I am now. And as soon as I thought it, I[…]

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[…]

done good

We went to an event last night.. me Tony and our.. well we don’t have a official title nailed down.. but basically our COO for Unravel.. It was to support Innovators Network who basically support Project Violet. I am a huge fan of what they are doing and how they are doing it.. far too intelligent for me to explain.. but worth a look! I love that people on the West Coast are starting to stand up and bring their support to these amazing west coast minds.  It was a good experience. I am glad we went.. but I am also left today with a dull ache and sadness. I am trying to sort out why. I thought a lot about Jennifer’s oncologist. How amazing she was to Jennifer and to me. . How very lucky we were to have her. And I thought about the incredible Dr. Monje and her[…]

tumor donation

**It was suggested to me that I write about my experience with tumor donation … to hopefully help other parents of children with terminal brain cancer. So please feel free to share**   Tumor donation. Not something I ever imagined we would have to discuss in regards to one of our children. Our daughter Jennifer was diagnosed with DIPG on her 6th birthday, Oct. 28th 2013.  DIPG is a brain tumor that is terminal upon diagnosis. I couldn’t believe that any of it was real. I was still in that fog 3 months later when we found out that the tumor had progressed… rapidly and it was time to go on hospice. The tumor on her brain stem had progressed to different parts of her brain and her spine. We asked if all the tumors would be helpful. The way her beloved and loving oncologist responded to that question was[…]