Month: April 2014

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[…]

answers

I woke up feeling like I was hit by a truck… weighted down and sluggish. Shoulda just stopped there.. but I didn’t..I went for a run. It was a crappy run.Oh and full disclosure since I hope to see so many of you at the 5k in May…I use the term run very loosely.. its more like a clumsy jog even on a good day! Then we loaded up to go to my nephews birthday party at Chucky E Cheese.. There was a bar next door to it.. Shoulda just gone in there.. I couldn’t handle being there. My sister had Charlotte and Tony was with the boys somewhere so I walked out and texted him that I needed to go for walk. I felt totally overwhelmed…this feeling like I wasn’t fitting properly in my own body.. like wearing a flip flop on the wrong foot. I wish I could[…]

clap

Music moves me…music permeated today… this song is the theme song for the first half of today… 2 months come… and gone.. This morning was really hard for me. We drove to Monterey… to be near the ocean and eat breakfast at a little place we really enjoy. Last time we were there was about a year ago on our “baby moon” right before baby Charlotte was born. …she turned 11 months today. Next month she turns 1… I really thought Jennifer would be here for that. I honestly never expected her to not make it to May. At our breakfast spot they have live music. The guy today was amazing…I got his card..  The song choices blew my mind, I cried at the table.. a lot. The hardest I have ever cried in public. I think its hard for Tony to see me like that… openly vulnerable.. to know how[…]

longest wait

2 months ago.. I was holding her. feeling her heartbeat…hard and fast… Tomorrow 2 months ago that beautiful heart finally succumb… stopped beating. The distance between me and her life grows…every time I go to bed another day is added allowing the gap between our time together to grow…but also a day closer to reuniting with her again.. my love/hate relationship with my bed. Nights I write and I re-connect. ..I also hurt..unexplainable sorrow. my love/hate relationship with the nights. I ran this morning. Thought about running the 5k in May…thought about how it will feel to add to the Jennifer Kranz fund at Stanford…I thought about how much she would have loved to help out her doctors. How much she loved them and wanted to make them proud. Her head doc called me last weekend. Just to check in and say she was thinking of her..of us.. These doctors[…]

opposite

I’m kicking…as hard as I can… trying to not sink under. . 2 months is looming… pulling me down. . This week has been leading me this direction.. today was a day where I felt like it has taken everything in me to not give in.. to not be swept away.. I had to keep going and trying for my boys. I cannot give up. But I am tired… tired on so many levels. More levels than I even knew existed. ..not even 2 months and I am already so weary of this constant ache. We are looking into another kind of grief support group.. one thats more like a class and has something for the boys. Like a grief support group for kids. .. but they have to be at least 4. On one hand I get it.. Nicholas is only 2. .. but there is a lot impacting[…]

hardest

Another Wednesday.. means another week has passed. .. 8 week in total since I held her and felt her. I spoke with somebody tonight about what that time was like.. those last 36 hours with her. Lying in her room with her. I knew she was dying.. knew she would be gone forever. I had no idea what that really meant. What that really looked like and felt like. It surprises me…constantly on this journey.. How hard it is.. I knew it would be the hardest thing I ever had to do. I mean I thought I really really knew and understood.. was prepared. “hardest” doesn’t even begin to so it justice… not even scratch the surface. Its like a tornado of all the “hardest” I could ever imagine feeling..deafening sounds..whistling in my ears.. I feel like much of my day is spent in “the calm before the storm”. ..[…]

truest truth

Its another one of those nights that my mind is in a jumble. I feel like I miss one night of blogging and my mind starts to race a million miles.. . .. shattered and scattered. I am weighing all our options for how to best make a impact in fight against pediatric cancer.. should I start a non-profit…should I start a branch of a already established non profit… should I concentrate on blogging and try my hand at public speaking… All while staying upright… living a balancing act .. . parenting grieving kids…loving a grieving man and desperatly grieving myself. All I know for sure is my family has to be top priority. I didn’t write last night because Tony and I had a in home date night. We haven’t sat together at home and shared a meal like that since she was on hospice.. After that my need[…]

proud

I had found out about a fundraiser earlier in the week that was happening tonight. Another family lost their beautiful daughter to the DIPG beast and started a foundation a few years back. good people doing good things  <– check them out! They welcomed my mom and I and baby Charlotte to attend. I debated until 30 mins after we should have left whether or not I should go.. . sick baby…I was tired and wanted to blog.. and it scared me. I went and I am glad we did. Driving through palo alto.. a city we spent the bulk of the last of her life.. I had to look down at my lap as we drove through those familiar streets. I felt .. . cold and lonely. .. . full and warm. One town that fills me with such contradictory emotions. I know it’s not time to go back to[…]

goodbye

New day… new goodbye. Its starting to feel like everyday there are new ways I am saying goodbye to her. .. over and over again. Yesterday, friday,  I picked Jonathan up from school. Right before I left to get him we got a email to approve her headstone. I like… well I like it enough for something I hate with a passion. And so expensive.. we were warned how much they would cost..but the nearly 8 grand bill shocked me. Totally worth it and I’m not trying to complain, I only share it so people have an idea about it.. maybe most people do, but I have been surprised at every turn how expensive death is. I haven’t tried to cut corners or find ways to do it cheaper though.. so I am sure it can all be done for much less. There is something special on it that Jonathan[…]