Blog - Unravel Pediatric CancerUnravel Pediatric Cancer

..because life keeps happening..

February 4, 2016Unravel Pediatric Cancergrieving after 1 year, grieving after 2 years2 years, 4 year old grief, 4 year old sibling loss, anniversary of child loss, bereaved sibling, child hospice, child loss, childhood cancer, couples grieving differently, difference in make and female grief, Diffuse Intrinsic Pontine Glioma, DIPG, grief over a sibling you never met, growing up in grief, helping a bereaved family, how couples grieve differently, male grief, marriage after child loss, pediatric cancer, remembering dead child, sibling loss, work and child loss12 Comments

It’s coming. I can feel. Even if I didn’t know it. Even if I didn’t remember it I can feel it. physical .. unrelenting.. grief.. A heaviness in my chest. A strain on my back. Ears always ringing.. just a bit. Heart beating faster and harder. Eyes stinging.. always on the verge of emptying. Another year. .. because life keeps happening. Why couldn’t I save her? Why couldn’t I relieve her pain? Stop her suffering? did i at all baby? was it ever not excruciating? This year is so different though. I knew exactly what I wanted to do. What made sense for all of us and I was able to make it happen. There was freedom in that. Freedom. Strength. Comfort in having a plan that felt right But not this year. This year its all up in the air. And nothing not a damned thing feels right. ..because[…]

flash

January 27, 2016May 4, 2016Unravel Pediatric Cancergrieving after 1 year, hospiceanniversary of child loss, brain tumor, cancer, child hospice, childhood cancer, Diffuse Intrinsic Pontine Glioma, DIPG, dipg progression, lucille packard, monje, mri, pediatric brain tumor, radiation, remembering childs death, tumor donation9 Comments

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[…]

…now what?

January 26, 2016May 4, 2016Unravel Pediatric Cancerunravel events, unravel workfundraising for childhood cancer, get involved, gilroy, how to volunteer, local ways to get involved, national non profit, non-profit, pediatric cancer fundraiser, sacramento, san jose, volunteering2 Comments

“Don’t just be sorry. Be active.” I say this a lot. I believe in it more than anything else I share on this blog and when I speak. I am sorry. Is the sentence I hear the most. It is said with full sincerity and love. I know that. I have not once doubted it.. because hell I am sorry too. But what I want what I need even more than the sentiment of those 3 words is action. Don’t let my daughters death be in vain. Help me and all of Unravel fight against the disease that stole her. The one that takes 7 children every single day from their parents. The day she left me.. I wrote about it here and here.. I was not alone on that day. The day my heart was shattered more than I ever imagined possible… I was not alone. The next thing[…]

so much has changed

January 22, 2016May 4, 2016Unravel Pediatric Cancergrieving after 1 yearbereaved parent, cancer mom, cancer progression, cancer recurrence, cancer spreading, child death, child grief, child hospice, child loss, childhood cancer, Diffuse Intrinsic Pontine Glioma, DIPG, dipg progression, forever 6, friendship after childloss, guilt after child death, kid cancer, remembering dead child5 Comments

Bridgette is 5 months old.. Thats how old Charlotte was when our lives began to crumble. .. Today is hard.. I just woke up hurting and wanting. And mad. I went.. as I always do in the morning, to a place Tony and I both call wonderful torture. The “on this day” option on Facebook. And I saw the picture of my Jennifer with one of her very best friends. They were wearing the matching pink minnie shirts Jennifer picked out for them in Disney World. I smiled. Remembering how the girls were so serious about trying to match everything. Same color hair things.. and boots and leggings and blue skirts. I smiled at how happy she was to be back at her preschool even though she should have been in kinder. How we gave her the choice of where to go .. and she gladly chose Ms Sandy with Maddie[…]

4 year old questions

January 19, 2016May 4, 2016Unravel Pediatric Cancergrieving after 1 year4 year old grief, bereaved sibling, child death, child loss, child questioning death, childhood cancer, connection with dead child, Diffuse Intrinsic Pontine Glioma, DIPG, explaining child death to a child, explaining death to a child, grieving child loss, grieving sibling, heaven, nicholas struggles, pediatric cancer, sibling loss8 Comments

Last night at dinner Nicholas just started asking questions. I was giving both little girls a bath at the sink while my boys all finished dinner. It started off casual and easy and Tony asked if they had more questions.. And Nicholas did. So many. So so many. He directed them all to me. .. It was Tonys first time hearing the things he asks.. Seeing his fear and tasting his 4 year olds sorrow.. .. but we’ve done the before. The way he fights the tears that burns his eyes. They way he struggles to understand. Its just like Jonathan after Jennifer died. This deep want and desire to understand the unimaginable. kids die. we don’t have the answers and i can’t protect you. But Nicholas needs things to be right and fair and in order. As he fought the stinging in his eyes that he doesn’t understand His[…]

a bears voice

January 14, 2016May 4, 2016Unravel Pediatric Cancergrieving after 2 yearsanniversary of child loss, bereaved parent, bereaved sibling, brain radiation, Build a Bear, child death, child loss holidays, childhood cancer, connection with dead child, Diffuse Intrinsic Pontine Glioma, DIPG, heaven, lucille packard, mommy guilt, radiation treatment for a child, remembering dead child, Stanford16 Comments

The holidays have come and gone. We survived. But I don’t really have time to catch my breath. Because now the countdown begins. To the official start of our 3rd year without her. That thought makes me choke and gag. Its a horrible notion. its my vile truth. 2 years ago right now I still had some hope. That maybe.. maybe my Jennifer would be the one. The first to beat this thing. That we would have time for more memories and experiences. That we made all the right choices. Choosing to try radiation. To have Tony keep working so we could take that time later on .. to be with her while she was healthy not in treatment. I will always carry a guilt that I think I pushed for him to do that… To work while I took care of her medical needs.. then take time once we[…]

the 23rd -12th-

January 12, 2016May 4, 2016Unravel Pediatric Cancergrieving after 1 year, hospice12th, 23 months, anniversary, bereaved parent, bereaved sibling, brain tumor, changed mommy, child death, child decline cancer, child hospice, child loss, childhood cancer, diagnosis with dipg, Diffuse Intrinsic Pontine Glioma, DIPG, Disney World, forever 6, guilt, make a wish, surviving child loss, tumor growth10 Comments

12th. I am supposed to be working right now. I have a follow up presentation at Genetech to prepare for next week. January 12th. Kids are at school and at my moms so I can write it in a solid block of time and get myself prepared. Its a big deal presentation. 1 month until THE 12th. .. ..again.. But I can’t concentrate. Its gnawing away at me. The time that I know is looming and coming too quick.. but also too slow. Because it feels like forever since I held her last. And its only been 23 months.. How will I last the rest of my life?? ..how the fuck will I last the rest of my life???? A year ago we were all packed up for our make a wish trip. Unsure what to expect but so excited for the adventure. Right before we left though.. the first[…]

she was here

January 7, 2016May 4, 2016Unravel Pediatric Cancergrieving after 1 yearbereaved mom, bereaved parent, child death, child loss, childhood cancer, connection with dead child, Diffuse Intrinsic Pontine Glioma, DIPG, forgetting a dead child. year 2 of child loss, memories, memories of a dead child, mommy guilt, nicholas14 Comments

I have pulled away from blogging. I have lots of excuses and reasons for it… But I do miss it. The release it gives me.. But especially the connection it gives me to my daughter. jennifer I feel so distant from her right now. So much so I find myself wondering if she was real. If she was ever really here. .. I find myself averting my eyes from her picture. I feel so guilty for it. Like I am denying her.. How much she matters. For the first time yesterday when asked about my kids I didn’t make it obvious she was gone from us. I just answered that I actually had 5 kids and when they asked the ages I only said she was 6.. Nicholas looked up at me and put his hand on my leg. I wonder so much what he was thinking. I presented at[…]

Guest Blog – Dyan Fox

December 29, 2015December 29, 2015Unravel Pediatric Cancerguest blog11 Comments

***This is written by a mom new to the world of cancer.. her daughter just recently diagnosed and about to begin treatment. A few weeks ago.. she was “just a mom” and her little girl was healthy. *** What They Don’t Tell You There will be a buzzing in your ears when you hear the news. The doctors’ words will fall over the room like broken glass. You’ll hear things like ‘tumor’ and ‘cancer’ and frantically try to avoid the shards, but you’ll be hemmed in by those pale green walls. “Why can’t there be any color in this office?” you’ll want to scream. “Why can’t there be some kind of life?” Eventually, the appointment will be over and you’ll walk out into the world, having to blink at the sunlight that won’t stop shining, no matter what thoughts are roaring inside your head. You’ll look over at whoever was[…]

her Christmas gift

December 23, 2015Unravel Pediatric Cancergrieving after 1 year, holidays, sibling lossbereaved family, bereaved parent, bereaved sibling, child death, child loss, child loss holidays, childhood cancer, christmas and child loss, connection with dead child, Diffuse Intrinsic Pontine Glioma, DIPG, elf on a shelf, heaven, relationship with dead child, remembering dead child, second christmas, sibling loss, signs from dead child, tumor donation, year 213 Comments

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[…]