brain tumor Archives - Unravel Pediatric CancerUnravel Pediatric Cancer

kick.kick.breathe.

September 21, 2018Unravel Pediatric Cancerchild loss, childhood cancer, DIPG, grieving after 4 years, growing up in grief, sibling loss3 year old sibling loss, 5 year old grief, 5 year old sibling loss, 7 year old sibling loss, bereaved family, bereaved parent, bereaved sibling, brain tumor, child death, child grief, child loss, childhood cancer, Diffuse Intrinsic Pontine Glioma, DIPG, sibling loss7 Comments

You ever been in the water.. and you start to get tired and your stroke gets slower and you sink a little deeper .. or like when you are in the current and you stop fighting it and let it pull you … That’s what grief is like I think.. Sometimes its too strong and you simply are unable to resist its pull on you.. Especially in the beginning.. because really you are only just learning to swim. But then you learn.. you have to right? So then you feel it happening and you kick against it.. Just a few strong kicks will bring you back to the surface and you can gulp in air. It happened to me today. pull. kick. kick. breathe .. but first I’ll rewind.. Two days ago I took my 4 younger kids with me to go see their sister. .. the living .. growing..[…]

atta girl Jennifer..

April 23, 2018Unravel Pediatric Cancerchildhood cancer, diagnosis, DIPG, DIPG treatment, grieving after 4 years, latest postbay area childhood cancer, bereaved family, bereaved parents, brain cancer, brain tumor, cancer progression, cancer treatment for a child, childhood cancer, Diffuse Intrinsic Pontine Glioma, DIPG hope, DIPG option, lucille packard, Lucille Packard Children's Hospital, NBC bay area, pons tumor, Stanford, Successful DIPG, treatment for DIPG6 Comments

This blog all pertains to this interview we recently had .. please watch if you haven’t. 4 years too late for her. There is more weight to those words than any others in the entire interview for me.. Because I am human.. because I am her mom. and its all 4 years too late for her. .. 4 years too late. That’s because I am her mom.. and I struggle to not see things through those lens. But if I step back. And I remember my little girl I know also. she will wait forever she will fight forever.. Because that’s who she was.. and by donating her tumor.. By raising money to fight DIPG.. we are still letting that be who she IS. She did not lose her battle.. because she is still fighting. I often get caught up in a vicious spiral.. wondering who she would be. What[…]

with the patience of eternity

April 10, 2018April 10, 2018Unravel Pediatric Cancerchild loss, childhood cancer, DIPG, grieving after 4 years, latest postbereaved parent, brain tumor, child death, child loss, childhood cancer, connection with dead child, coping with child loss, Diffuse Intrinsic Pontine Glioma, keeping memory alive, surviving child loss6 Comments

I know I need to write.. But Im scared to. But then again Im scared not to. I find myself aching for her.. I find myself wanting to hide and just be with my kids.. (and husband) shutting out the rest of the world. I am strong. I am the second strongest person I know. I am broken. I am the most broken person I know. I am crying constantly it seems.. just a tear.. maybe two.. Then it dries up. My pain burrows deep and hides itself away.. I freeze. I sat down now to work on our speeches for upcoming Night on the Town in Sacramento.. I started to pull up pictures for Tonys presentation.. and I felt that familiar buzz… a weight on my chest.. forcing all the air out of my body. an invisible noose tightening quickly around my throat. .. I exhale.. and its gone.[…]

3 years… almost..

January 26, 2017January 26, 2017Unravel Pediatric Cancerchild loss, childhood cancer, DIPG, grieving after 2 years, latest postafter child loss, brain tumor, caring for a dying child, child hospice, child loss 3 years, DIPG, guilt after child death, guilt after child loss, how to help a child on hospice, pediatric brain tumor, regrets after death11 Comments

Almost 3 years. I said those words aloud to another DIPG parent last week, a Dad just starting out on their journey.. and I haven’t been able to shake it. .. 3 years. Its been almost 3 years since I last held my daughter. Since I last smoothed the hair from her face.. And whispered in ears.. Almost 3 years since I felt her slight weight in my arms… I wonder. So much I wonder if I helped her. If I said the right things to her.. I wonder if she felt safe.. if she was angry? Was she scared? were you scared baby? I don’t know how to not let the slow onslaught of questions overtake me. I am trying. I am really trying to stay above.. but the waters are rising. . A slow and constant pounding … a steady and growing swell of grief is swirling around[…]

is 3 real?

May 11, 2016Unravel Pediatric Cancerchild loss birthdays, grieving after 2 years, latest post, sibling loss3rd birthday, bereaved parent, bereaved parents, bereaved sibling, brain tumor, celebrations after child loss, charlottes birthday, child hospice, child loss, child loss birthday, child loss holidays, childhood cancer, connection with dead child, Diffuse Intrinsic Pontine Glioma, DIPG, growing up in grief, honor dead child, remembering dead child16 Comments

Tomorrow morning I wake up to a 3 year old little girl… and it makes me sick to my stomach. and really really angry. I, like all moms, get a touch melancholy about their birthdays.. about how quickly time passes once you are a mom.. But my ridiculous decorating the night before their birthday has helped it become a fun night.. Birthday eve. The other kids get to stay up and help decorate and wrap presents. I make the birthday kid a birthday chair horrifically decorated in balloons and streamers.. Its made me happy to have them turn a year older. A day all about them. . and I like giving them that. Nothing expensive.. just attention and traditions. I’m usually excited about their birthdays. .. even after Jennifer died I still have loved.. maybe even more if thats possible.. decorating and getting the house all ready after the birthday[…]

cool kids table

March 28, 2016May 4, 2016Unravel Pediatric Cancergrieving after 2 yearsbereaved parent, bereaved sibling, brain tumor, child chemo, child loss, child radiation, childhood cancer, childhood cancer death, childhood cancer survivors, Diffuse Intrinsic Pontine Glioma, DIPG, divide in cancer community, helping a bereaved family, jealousy, jealousy child loss, keeping memory alive, lucille packard, make a wish, pediatric cancer clinical trial, pregnancy after child loss, rainbow baby, sibling loss, Stanford11 Comments

I’m jealous. Of things I never ever would have imagined feeling jealousy over. But cancer has changed me. Losing my daughter has changed me. I see the bonds other cancer families have created through time spent wandering the halls of the hospital and I want that. When I see them getting together.. those surviving and those still fighting a feel like I am walking around the school cafeteria with a tray in my hand.. with only one table to sit at. Most of the tables filled with parents who haven’t carried a cancer diagnosis and they look away and down when I walk close.. Truth is.. even when welcomed I can’t seem to figure out how to lay my tray down and sit anyways. The table is too smooth too shiny .. I see another one and a part of me longs so desperately to sit there too.. Kids that[…]

down the aisle

March 21, 2016May 4, 2016Unravel Pediatric Cancergrieving after 2 yearsbaby after child loss, bereaved parent, bereaved parents, bereaved sibling, brain tumor, bride, burying a child, child death, child funeral, child loss, child tumor, childhood cancer, Diffuse Intrinsic Pontine Glioma, DIPG, facebook, guilt over child loss, mommy guilt, Stanford, tumor donation, walking down the aisle, wedding8 Comments

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[…]

unrelenting questions

February 28, 2016May 4, 2016Unravel Pediatric Cancergrieving after 2 yearsadult cancer, bereaved parent, brain cancer, brain tumor, child loss heaven, childhood cancer, Diffuse Intrinsic Pontine Glioma, DIPG, operable cancer, pediatric cancer, signs from dead child, signs from heaven, terminal cancer6 Comments

My days seem to be so full of questions. Unrelenting questions that most will never ever have an answer. Sometimes I wonder.. why do things happen the way they do… Why does she send me the things I believe are signs the way she does. . A few days ago I was at Starbucks and saw a woman wearing a sweatshirt I knew from a distance was about brain tumors. .. I debating.. Maybe it was for an adult. Maybe she wouldn’t respond well to my coming up to her. .. but I did. Just like I asked all of you to do. I walked up to her and told her wy I approached her. Her granddaughter had a brain tumor. .. And I felt a rush of kinship. .. Except it wasn’t. Her tumor was operable and treatable. .. And she was an adult. I think because of that momentary imaginary[…]

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[…]

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[…]

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