Category Archives: Daily

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

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

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 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

Peacock

Tori, Alissa, CiÅra, and I are in line at Jamba Juice this weekend, we order, and she asks us what name it’s under. I say Jaime. We wait for our drinks, and the the guy calls out Katie. We all look at each other. Yup… They are our drinks. Alissa says, “You must have said Katie…” I said no way. I would have remembered that… Somehow, on Sunday, I got through an entire day of school clothes shopping without a problem. I could hardly walk on Saturday. Ended up in urgent care. I could hardly walk Monday. Ended up needing help into and out of the car. I think I know how I got through that day. Thank you my lovely Katherine. We miss you so much! #KatherineTheBrave #DIPG #Peacock #GoGold​

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War

I don’t think ANYONE can understand the complete and utter disaster my mind is in as I even begin to contemplate going through Katherine’s belongings.
“I’m on a craft of some sort, floating, and sick to my stomach, headed to a shore, my goal. I have to begin, get off this boat, about 1 mile before I reach my goal, the shore. With no assistance, no preparation for what’s to come. No idea which direction I’m going. I see an end point. Maybe… No idea what I’m doing. I wade through the water and floating debris of my daughters life, for a mile or more. Carrying lbs. and lbs. of cargo, stress, and pain, on my back. In my mind. Fear is gripping me. Should I turn back. Maybe tomorrow. Praying I don’t let the water and anxiety overtake me, so that I am lost forever. Avoiding the seriously dangerous thoughts coming at me from all directions. Shots of memories, regret, and missed moments in time. These “things” are coming at me, and decisions must be made. Box. Trash. Give away. Stare. Cry. Breathe. Cry. Hate. Breathe. I can’t breathe. I can’t think. I have to get through this… I need to focus. I have to get to shore. I have to save myself, before the process of removing my daughter from this corner of the shore takes over and expands into every area of my life, similar to how this cancer spread through her mind. Freely. Almost as if it received a warm welcome. I can’t let that happen. But I don’t want to do this. I want to give up, even though I know I already have.”
A glimpse. The first two pictures are where my daughter was with me. Strong. Alive. Fighting. The second picture is how my daughters life exists now thanks to DIPG. A pile of memories. To be gone through. To be sorted. Overflowing and feared. Cancerous. This is where we are drowning mentally every singe time we gather the strength to even contemplate going through her life. We’re at war with it. #LessThanFour did not just kill Katherine, it’s killing us. Slowly. 
#LovesAndKisses

#KatherineTheBrave

#DIPG

#PleaseShareKatherinesStory

#KatherineDeservedMoreThanFour

First Day Of 2nd Grade

Today Katherine should be starting 2nd grade. I should have taken the morning off and drove her to school. Walked her in. Excited. Taking lots of photos of her curled hair and big grins. Hugs and assurances that she would be fine today!
Instead I’m looking at Facebook memories of my child who isn’t here anymore, and noticing her half smile from all the way back in preschool where I was unaware of the danger lurking within our child’s mind. What did I miss. Could I have done more. So unaware. So oblivious. 
Today’s Facebook stroll is another reminder of why we ALL need to do more for our children who are dying every day and given no funding for research by our government. Not one of my friends can say they don’t know the truth now. 
What are we doing to change this!? Ask yourselves… I ask myself this every damn day. We all should. 
#FeelingSomethingMissing #APieceOfMeIsGone #KatherineTheBrave #DIPG #LovesAndKisses #PleaseShareKatherinesStory

Tori graduated!

#KatherineTheBrave’s oldest sister Tori.
“Finally received Tori’s graduation picture. I’m so proud of you Tori. Funny story… Tori walks up to the lady handing her the diploma, and the lady says, “We’re not really supposed to talk to you guys, but I really like your shoes…” As you can see, Tori’s gushing. Good job mom Megan. :)”
#DIPG

#SuperSib