Category Archives: #PleaseShareKatherinesStory

The Flood

When it starts, it’s like a flood. But instead of hearing it, you feel it. An odd thought, or a chill down your back. And before you know it memories of her last breath engulf you and seep into everything that you are doing at that moment. It all becomes one suddenly. That life. This life. The emotions. It drags you down deep into the hell you lived for so long. And her suffering. The suffering is the worse. The memories of her humiliation, and the loss she absorbed as her 7 year old body was wilting away, while her friends and cousins were exuberant and blissful. She watched it all, and felt it, and fought it when we all gave up. She didn’t blink.

The loss of her and of our happy life consumes me sometimes. Once it hits you there’s no controlling it. You either deal with it at that moment, or later. Work, car, store, an event. It doesn’t discriminate. Just like #DIPG. There’s nowhere to go. The effort to crawl out of that painful breadth is staggering. You can’t imagine how a person going through what we have gone through could take one more step, make one more move, continue that conversation, breathe. But we do… I’ve sat there and shuddered, shaking my head from side to side, closing my eyes, blinking really hard all at once to get it out. Literally like a movie, using my supernatural powers to expend any pain or suffering from my thoughts. Anything to try and get it out of my head. After a bit I can push it way down, until later when I’m alone. And I won’t lie. I’ll tell you why I’m being a jerk and ignoring you, or not focusing. And then I’ll move on and make it look easy. But it’s not… It’s like suffering all over again, and neglecting the issue as I did then. Hoping it will go away and just leave our family the hell alone. It didn’t.

I’ve aged years since Katherine’s diagnosis and death, and my mind and heart went with her. I’ve tried to find it, but it’s not there. The mom I was. The wife. The friend. And I care so much about that. So damn much its sad. And that worry has just aged me so much more. The worry about all of it. Mom, Wife, Employee, Daughter, Sister, Cousin, Friend… All of it. So much so that I shake before anything preplanned, uncontrollably. And I will shake all day. Sometimes I feel something pushing me down and preventing me from leaving my own house, or moving forward. It’s awful. And it makes me bitter. Then I make excuses. Then I cut people off to avoid it. Something I never did before…

I guess watching your child die will do this to you. It would take something big like that to keep me from being who I was before. Back when no one could break me, and I was a rock for so many. I got nothing… Nothing more to give.

Words of advice… Don’t

  • ask me to reach out if I need anything, you should reach out to me, or no one will. I admit it…
  • ask me how I’m doing and expect the truth. I will say fine, or miserable, or getting by, and then change the subject. Why make us both miserable.
  • reach out to me and not follow up because you haven’t heard back from me. I can guarantee you that I got the message. Closed the message. Thought of a response. Got anxiety. Decided not to respond. Waited days to feel guilty. And then responded too late. Ya… Another text might have helped me along with that. Or just not getting upset if I respond too late. My bad…
  • get mad when I cancel. Again.           And again.
  • get mad when I don’t reach out with thank you’s for all that you have done. Trust me, you’ve done more than I would have done. I know that, but I don’t show it because I can’t show anything real right now. Even to myself.
  • be shocked when I’m late all the time now, when I never was before. Just be glad I made it. You don’t know the mountain I had to climb to be there.
  • be upset if I don’t go up to you at a party and say hi. I’m not the person I used to be. Please say hi to me. And not cautiously. Or as if I have a disease.
  • expect me not to be upset when you haven’t reached out at all, or nearly as much as you did when my kid was dying. That is LITERALLY like a stab in the back to a mourning mother. I never knew that before. And I would wonder why so many people cared. Now I wonder how it’s possible that all of those caring people don’t care anymore. It kills me inside.
  • pretend I don’t remind you of the possible fate of your healthy living children. I know I do. I see it in the arms distance relationships that have happened more and more lately. I see it in your eyes. I your words. I know interacting with me is sometimes difficult because I remind you of every parents worst nightmare. I can’t pretend I don’t. And if you treat me like I do, I will exit stage left… swiftly.

I’m sorry Katherine. I miss you mongrel. And I’m sorry to all of my friends and family. My daughters, and my friends. Especially David. I’m so sorry… for the truth, and the lies, and this life. I’m writing to be stronger. I’m writing to be here.

Day 23 Packing Up

#PleaseShareKatherinesStory#ThisIsDIPG

#DIPGParentsMakeTheseKindsOfDecisions
Day 23 of Pediatric Cancer Awareness Month
Last night I finally went through some of Katherine’s stuff. I just couldn’t take it anymore. Staring at that heap. So crudely tossed together in a crying fit of rage. 7 years of a beautiful human beings life, now nothing but possessions, memories, bags, no organization, and chaos. Similar to my mind. She was so much more than that pile of stuff. She would definitely NOT approve of the mess. Perpetually her mother’s daughter… I drove home, pumping myself up. Talking to myself in my head. I can do this. I can get started. If it’s too hard, I’ll just stop. I just had to at least start it on my own, so that if it’s too bad for me emotionally, than I wouldn’t be there falling apart, surrounded by others, making them uncomfortable. I felt ok, I knew it needed to be done, and I wasn’t getting rid of anything, just boxing it up, so that helped me convince myself that I could do this. I sat in the car for a while, taking my time to walk up to the door, and walked in to my home.
When I started, I asked Alissa for help. She did, begrudgingly. Not because she didn’t want to help. Because she too felt depressed about it. David came home, looked at me, stone faced. He knew… I was doing this, and there was no changing my mind. He went to get changed, and joined us. We worked as a team, quick, and almost in a hurried manner. Rushing to pack boxes, as fast as possible. So fast as not to touch anything too long, dwell on, or think too deeply into anything that would conjure up an emotion we could not control. We packed her precious items. Her artwork, books, horses, gloves, dolls, tiaras, socks… so many beautiful colored socks. Toys, toys and more toys. Toys she put aside to play with “when she felt better”. Toys she saved for her cousins. Half completed projects, from the “to be finished when she felt better” pile. Half drawn artwork, to be given to people she loved at some point. Trinkets she picked up along the way to share with her kids later in life, rocks, sand, feathers… Boots. Soft pink boots, which she wore every day. I put that in the box, and didn’t look. I just felt my way around the box, and stuffed them in, head turned. So many things. So much of her. Now boxed up, and bagged up. Waiting for me to have the guts to make decisions. Horrible, awful, decisions…
I wiped my face, my neck, my chest, the floor when I was done, it was soaking with tears… I wiped up my soul from that floor as well. My heart… my sanity. Wrapped up the towel, and I put that in a box too. For later…
#KatherineTheBrave

#DIPG

#MoreThanFour

#GoGoldForKatherine

#LovesAndKisses

Thankful 

It’s been a while since we have been able to say thank you for the things that people have sent us, and Katherine. I’m sure there will be plenty that we have missed. Katherine’s stuff is piled up and waiting. I’m moving slowly. Every item, and inch forward, feels like a million miles of pain and hurt. I promise that we are grateful for everything, and will try hard to get to it all very soon. In the mean time I know that time is of the essence with Katherine’s Celebration of Life and #DIPG research fundraiser coming up. So… here are some thank you’d.
Thank you to the Better Britches Team, and Whitney Denman, for Davids LuLaRoe shirt!
Thank you Theodora Cornelia, Sherry Resquer, Damaris Brusby, Kimberly Rucshner, and Laura Moreno for the abundant amount of socks for Katie’s celebration of life. 
Thank you Laura Jean for the leis and for doing so much for this family recently as well.
I remember Katherine only letting me put her socks on. It was Mommas thing. I miss you sweetie. Goodnight everyone. 
#KatherineTheBrave

#DIPG

#LovesAndKisses

#RainbowSocks

September 8th

Day 8, September 8th, Pediatric Cancer Awareness month.
She is frozen in time.
Everything around me moves, and I wonder… How? That look on her face, in this pic, “I’m having so much fun mom! Cheeeeeeesssse!” I was frustrated on this day. Another invite, to another party, on another weekend day, which I felt was wasted in this situation. My sweet Katherine didn’t want to eat, she just wanted to play. Taking time out to eat was wasting time. She wanted to be in the moment, to soak it all in, and enjoy herself. Why do adults forget this uncomplicated fact of life. To be in the moment, and enjoy ourselves, and our kin.
I wonder if it’s because we are lied to. We are led to believe that we have endless time, and that people are out there every day trying to save us, from ourselves. To give us more time… The efforts are fruitless, and the money is evenly distributed, and kids are our number one priority. So, if I told you that the average loss of life for a child who succumbs to brain cancer is 71 years, and then if I told you that the average loss of life for a person who succumbs to breast cancer is 16 years, would you feel safe? Would you stop, and think about the food you’re feeding your children, or the choices you made at their last exam? Would you trust the system to care for them? Then if I said that the #AmericanCancerSociety gives .01% of every dollar that you donate to our children, and that the #NationalCancerInstitute gives less than .04% of every dollar, would you still feel safe, and secure in our current system? Would you be concerned that the poisons that they use to “save” our children cause these children’s as adults to succumb to more cancers, and diseases as their bodies are weakened, and suffer further. Would they get more money than from the ACS, and NCI as adults? I’m going to assume that as 95% of them get closer to the ripe old age of 45, which is the average age at which our children will succumb to other diseases caused by chemo, that as long as it’s not a rare disease, and also not a non-profitable disease, they will be fine and well taken care of, if they make it…
No, I don’t feel secure anymore. I remember that moment, in that hallway, when we were told Katherine would die, and why… We learned that we are the advocates, and the families are the warriors, and that no one else is going to do it, but us. We didn’t feel safe anymore, and neither should anyone, anywhere.
Everything is moving around us. Fast. But there she is, smiling at me… Hoping that I will be in the moment with her. I’m still trying Katherine. I promise.
#PleaseShareKatherinesStory

#MakeOthersAware

#Awareness

#ItComesAndGoesInWaves

#KatherineTheBrave

#DIPG

#LoveAndKisses

#GoGold

Future

Day 6, September 6th, of pediatric Cancer awareness month. What did cancer take from me? It took my beautiful, brilliant, loving daughter. Our families center. It took away a future doctor, nurse, teacher, scientist, cancer cure contributor. It stole a daughter, sister, cousin, niece, friend, and future mother and grandmother. It ripped the core of our existence. The ripple affect of life’s daily proceedings is forever changed for everyone who knows and would have met her. 
What did cancer take from you? What did it take from us as a society. Please share this post and write what cancer stole from you. On the comment, on your shared post, or both. Show me, and others, that we are not alone. Tell people why this matters. Why you will never be the same, and how this should matter to us too. Warning: this is going to stir up emotions. From your childhood, teenage years, or adult life. Maybe emotions that you weren’t really prepared to deal with today. But the reality is that we grow apathetic to things such as cancer, pain, and death. And very rarely do we reach back and remember how wrong, and unnecessary things like cancer are. How much they took from us. The pain of having our loved ones taken from us so soon.
Our government, the NCI and ACS, count on us to go back to normal, and move on. To donate in memory, but not question their process and their billions in funds which do not get distributed evenly, because the ones who shout the loudest are the ones who get that money. I’m not ok with this. I miss my child. We should all be worried and remember, remember deeply.
I have a feeling the comments and shares are going to shock me, and I’m ready.
#PLEASESHAREKATHERINESSTORY

#katherinethebrave

#DIPG

#MoreThanFour

#lovesandkisses

#gogold​

Chinese Ballerina Camp

Because people are asking me, and it really needs to be heard, here is the original video of Katherine without the music. It was the day before our annual family vacation to Hawaii, April 9th, 2014. She was amazing and now you will know how free her spirit was and, for some of you, remember her love for life. 
#KatherineTheBrave

#DIPG

#KatherineDeservedMoreThanFour

#MoreThanFour

#LovesAndKisses​

You Failed Us

Day 5 of pediatric awareness month, September 5th. And I am reminded of innocence lost in my “On This Day” reminders. So many firsts will not happen for my daughter. So many life lessons learned way too young for a 7 year old. #NoMoreLooseTooths #NoMoreFirstAnything DIPG stole her innocence. Lack of funding stole our child. Lack of awareness delayed her diagnosis. #NoMoreExcuses #MoreThanFour #GoGoldInSeptemberForPediatricAwareness NOT OK #ACS #NCI You failed our children with our tax dollars! #Angry is an understatement! #PleaseShareKatherinesStory #KatherineTheBrave #DIPG

September 3rd

I am lost today. September 3rd, day 3 of Pediatric Cancer Awareness month. I am taken back today to the day Katherine was diagnosed. This is somewhat forced upon me, due to a recent situation I’m dealing with, but it’s real, and it’s raw, and it’s tearing me up inside.
Right now a beautiful young child is sitting in a hospital NICU, and has just been told that he has cancer. One day he was feeling perfectly normal, and the next day he is in agony and unable to walk. He is scared, worried about his mother, and thinks he is going to die. He’s probably wondering if he’s different. He’s worried about looking strange. He thinks life will never be the same again. He’s right… His mothers entire world has changed. She feels like a ghost surrounded by lab coats. No one can comfort her. 
I know exactly how she feels. I was her. I can’t remove myself from this experience, because I was this experience. I can’t just send my love, and sympathy, and hope for the best. I know how in some cases, such as ours, the best doesn’t happen. I do believe in miracles though, and if I could have one right now I would ask for it, even though Katie did not get one. This is happening right now. And it will happen 46 more times today in a hospital near you.
We need to wake up. We need to make more people aware. We need to take away the excuse of, “I had no idea.” This mama knew better. Being very close to Katherine’s story, she demanded an MRI, after being told everything was fine, and just go home. That MRI discovered a cancer so big that her son may never walk again. Within hours his basic functions started going. But… He may live, because she was fierce and would not take excuses! Awareness saves lives.
So let’s spread some damn awareness, and save some children’s lives! Please share this message, and please copy and paste this statistic! Watch the eyes raise, and the minds focus. ***In 6 years we have created 77 new drugs for adult cancers. 6 years… And in 77 years, we have created 3 for pediatric cancers. 77 years… Some pediatric cancers are still incurable. These children are told to go home, and die. My 7 years old daughter Katherine was told to go home and die. And she did.*** (drops mic)
#KatherineTheBrave

#DIPG

#LovesAndKisses

#MoreThanFour

#GoGold

September 2nd

September 2nd, day two of Pediatric Cancer Awareness month, #GoGold, and oh the thoughts going through my head. My precious 7 year old child is gone. On June 6th of this year she died in my arms, after I asked her to let go, as I changed my mind and begged for her to stay with me, and then begged her to be pain free and go again…
So I’m left here to ask: Why didn’t I know about pediatric cancers and their lack of funding before my Katherine was diagnosed with cancer? Why didn’t we know that some cancers, as Katherine’s, have no survival rate, and that children are just expected to go home and die? Why didn’t we know that cancer kills more than 2,500 children in our country every year. We weren’t aware that over 13,500 kids will be diagnosed with cancer over the next 365 days, right along with us? Who knew that no government funding means that these children sit and wait to take poisons that don’t work, and receive treatments which are more than 35 years old, and with little survival success rates. These children WILL die. I could have never guessed that the NCI controls BILLIONS of dollars in funding but will NOT give it to us!!! I was oblivious. 
Well now I know. And so do you. Are we mad yet???
This was my daughter. Several days after she passed away in my arms. Surrounded by friends and family. She is laying on a cold metal table, in a mortuary. She has her favorite princess blanket draped over her body. This is pediatric cancer. This is #DIPG. This isn’t an adult. She didn’t live a full life. She didn’t even live a partial life. She lived 7 years. She was given no chance. She deserved more. We were told she WOULD die. And that she did. She died. She gasped for her last breathe, in no different fashion than an elderly patient passing of natural causes and old age. At 7 years old. And we died too. 
Please share our daughters story. Please share so that others are aware. So that at some point in our lives other kids hopefully do not have to suffer the same fate. So that the NCI and the ACS have to pay attention. So that our government realizes that their focus, and their priorities, are mute compared to the children dying every day right in front of our eyes, in this country. Dying, in our arms. In my arms…
I’m so sorry Katherine. I miss you. I’ll fight until I die for people to stop this insanity and do something about this. #LovesAndkisses
#KatherineTheBrave

#PleaseShareKatherinesStory