“I don’t want to go to heaven alone! I am going to miss you! I’m scared to go alone!” As she reached for me so many times.
Katherine feared her death and cried openly about it. For months we would say not to worry, that’s not gonna happen. Or, we are going before you. And this would calm her down. Although, her fears increased, and at some points it took hours to calm her down. Lots of hugs and kisses, and distraction. Eventually that lie would not work anymore. She just knew. It was in the air. She could sense it. Our expressions spoke volumes. And loudly. With each raspy coughing fit and added day of no eating. We were walking open books. Eventually, the fears came several times a week, then multiple times a day. Then it was constant.
I remember a few weeks before she passed, after another cry, I said to her, “Heaven is so amazing, you won’t even miss us. You will blink and be there. You’ll blink again and we will be there. A blink” Time is infinitesimal. A blink. A blip. For her…
But for us, we are that boiling pot of water being watched. We will never quite come to any sense of a normal. Just when we think it might happen, someone starts staring at the pot again. And I lied to her. Over and over. About everything. I promised we would be waiting. And here we are. My other daughters struggling to be normal. My husband fighting to move forward and deal with it in his own way. And me. Holding onto the regrets. As we boil over when everyone turns away again.
I promise you Katie I said those thing because I loved you. I didn’t want you to be worried. I wanted you to smile and laugh and be you again. The Katie Baby who loved funny socks, and frozen grapes, and made flying chicken finger potato pea boats to get her veggies down, just to make mom happy. And, none of it worked. The lies. You were never you again. And we’ll never be us again. We all died that day. A blip. And we’re gone. We’re just still in our skin.
(Daddy’s last goodbye)
I watched my child die and wished so many things I hadn’t said were said. Things that I was worried would make it worse for her. Her fragile emotions, as fragile as it could be as a 7 year old who subconsciously knew she was dying. I had 12 months to prepare, and there I laid, wounded, voiceless, frozen. No amount of “warning” can prepare you for watching your child breathe three last times. It’s always three last times.
No amount of science or faith can save you from that moments sobering reality. My childhood trauma, the fight to escape, was nothing compared to watching her fight to live. To fight to be with us just one more day. She was stronger than all of us, and there we were. Blank.
I know what I’d say. Again…
“I’m so sorry… I don’t know why. I wish I did. I wanted to save you. I will try to save others. Your friends. Their kids. I will keep you alive. You are so special. So much more than this life. You won’t be alone in heaven. Don’t cry. I promise it will be amazing there. I’ll see you soon. I will be there. Please wait for me if I’m not.”
On, and on, and on… I wanted to say so much more. So very much more. She deserved more. She deserved some answers. If this was your last day, or if it was the last day to say something to someone you loved, your child, what would you say? Just the thought makes people pause. I know. Me too…
#KatherineTheBrave #DIPG #EndDIPG #MoreThan4
Just ordered a very large lot of #KatherineTheBrave bracelets. Finally! 🎗 We have adult size gray with light gray font, and children’s size rainbow with bright white font. They say, “#KatherineTheBrave #MoreThan4 DIPG”. Picture in comments. Any profit goes to the McKenna Claire Foundation towards this weekends Lemonade stand up until this Sunday night. Any orders on Monday and beyond will go to the Lucille Packard Childrens Hospital which will support both McKenna and Katherine’s tumor research. Both foundations make a huge difference for DIPG! You can PayPal me at: https://www.paypal.me/katherinethebrave with whatever donation you are able to give, and list your name, address, and how many you have ordered of each size in the comments. Orders will start shipping next week. Email me at JaimeRieck@yahoo.com with any questions. Thank you so very much! – Momma the Brave
#Unravel #KatherineTheBrave #MNO @LibbyKranz @Unravel @MNO #MNOLivermore2017 https://www.facebook.com/KatherineTheBrave/videos/1720816311293220/
Valencia High Schools Go Gold for Pediatric Cancers game was a huge win. Listen to the speakers voice. He read her story so eloquently and better than I’ve ever heard it read. Thank you Valencia, Mr. Louie, our wonderful ASB ladies and gentleman, and the Varsity football team for a wonderful game for Katherine the Brave! It was nice to hug you Garrett Paine. I haven’t seen you in years. 🙂 #KatherineTheBrave #VHS #VHSTigers #ValenciaHighSchool @ValenciaTigers #ValenciaTigers #GoVHSTigers https://www.facebook.com/KatherineTheBrave/videos/1719736381401213/
I write speeches and I’m reminded that even if I feel alone in my battle for my daughter, I have support. Out there. I just have to keep writing. And make everyone everywhere believe how important this still is.
Valencia Go Gold Football Game
“At six years old, after what seemed like months of doctor visits, trying to figure out why our daughter Katherine was struggling to do normal things that all kids do, we took her to the hospital, and were given the awful news that Katherine had a brain stem glioma called Diffuse Intrinsic Pontine Glioma, or DIPG. Our 6-year-old Katherine, the baby in our family, was diagnosed with the number one killer of children in our community, and around the globe. That killer is Pediatric Cancer. Throughout her illness, out Katherine had a smile that would light up a room, and she would greet you with a strong hug and bid you farewell with a stronger hug, waving goodbye, saying, “Loves and Kisses” and “See you next time!” She wanted others to know that she was happy to see them, and would miss them. She gave hugs even when it hurt to lift her arms. She cared for others to the very end. Katherine passed away, in our arms, on June 6th of last year. A light was lost that day. A very bright light. Many of us know cancer. Cancer affects all of us in some form. When we are affected by a cancer diagnosis the fight to get rid of it begins. However, some cancers have no fight. Sometimes with cancer you are sent home and there is no hope. And sometimes, and more frequently, that is happening to small children, all around us and like our Katherine. September is Pediatric Cancer awareness month. It’s the month we get to say, “This is NOT OK” and, “We will not stand by and watch this happen to our kids.” We wear gold tonight to show our support for the many children out there that are fighting to live every day, and for those that could not fight and were sent home like Katherine. We wear gold tonight, and support these children to spread awareness, and share in their battle, so that others know that we need more funding to save these children, and we need people to know that it isn’t always a happy ending. Sometimes its tragic, and sometimes they don’t win the fight. But they could, if more people knew, and more people supported now. We were once like everyone here. Just going about our life, and thankful for every new day with our family. Let’s give that to everyone, and stop Pediatric Cancer in its tracks! Thank you for coming tonight. Thank you from our family, David and Jaime, Katherine’s parents, from her sisters Tori and from Alissa LaShorne, who attends Valencia this year as a senior, and thank you from Katherine, our little DIPG warrior, who is now Katherine the Brave. Good luck Valencia Tigers Varsity Football team, and to everyone Loves and Kisses, See You Next Time.”
My best friends son. 😔💛🎗
Pediatric cancer is not rare.
Let’s do something about it.
September is Pediatric Cancer Awareness Month and we have so much work to do. Our children deserve our awareness and our action. So that’s what we’re going to do. Over this next month and beyond, we are going to share the stories of some of our brave warriors and heroes who teach us to fight hard and never give up.
“Aidan WAS a very active boy. He played just about every sport you could think of. If he wasn’t watching a sporting event or playing himself he was constantly outside riding his scooter, building forts in the backyard, or shooting hoops with his best friend. He loved school. He had only missed one day of school from Kindergarten to the fifth grade. He loves his friends but he also loves to converse with adults. He would be invited to kids’ parties because he was “friends” with the mom. (Lol) He is bright and has a memory like an elephant. He loves practical jokes and has the most amazing sense of humor. He also loves to travel! Because of the tumor on his spine, Aidan is now paralyzed. He can no longer play sports, he has not been to school in a year, and instead of being outside, he is stuck indoors playing video games or watching tv. He struggles with the fact that he cannot walk. He was paralyzed from the neck down and once the tumor was removed he has gained some mobility on the right side. He cannot control his bladder so I have to use a catheter to drain his urine. He has had some incredibly embarrassing moments because of the bladder function loss, and has found humor to get him through. There are a lot of uncomfortable moments and together we try to focus on what he does have verses what he doesn’t. From the date of diagnosis, I left my job. I am a single mother and so there is absolutely no other person providing an income to support Aidan and me. We have to rely on donations from family and friends and even people we have never met. I will start working again soon, but am only able to earn 150% below poverty level. So, that is obviously not enough, but to me it is better than nothing. The reason for this is Aidan is able to be on Medi-Cal, which covers much more than his other two insurance policies. Yes, even with two insurance policies, the bills would be more than I even make in a year. Right now, he is working hard in physical therapy. Hopefully he will be able to get back into school in the next month or two. I will work in between caring for him. I am very proud to be his mom. He has dealt with this cancer diagnosis and being stripped of the life he knew with a lot of strength, mentally and physically, and laughs and makes me laugh on a daily basis.”
Fighting for Aidan
She found her! After the war. And the rebellion. And the fight to find her. We. Fought. To. Find. Her. I got lucky. I found the key to the lock. The one person who could find my lost soul. This woman found her. In this strange place. The woman looked at me, smiled, then looked towards my child and pointed. She stood there. My child. In the middle of something else. Stopped. And stunned. She smiled to me and started running down the sidewalk. Her crooked smile. I ran to her and fell. I hugged her. On my knees and she smiled. I caressed her hair. So golden. Too scared to look at her face, even though it felt so real. Because as I’m hugging and crying in sleep and in life it’s dawning on me. Shes so clean and well taken care of. Where has she been? Quick bursts of hugs now. Soaking it in. It’s dawning. I feel her bones. Her weak bones. The sucked in skin around her collar. I remember those. She’s transforming before my eyes, yet she doesn’t let go. Such a strong determined hug. This realization brings me comfort. She was real. I’m not imagining it. It quickly brings me sadness too. I remember now. I realize what’s happening. I’m awake enough. It’s just a dream. She died. She’s not lost. She’s dead. No need to let the dream play out anymore. 😔I force it gone and sob. I sob so hard I sit up to breathe. I’m still sobbing. My baby. She’s gone. She will always be gone. I will always cry. Self medicate. Envy. Suffer. I will be in a permanent sad dream and will never have a fully happy one again. Or her… That thought of forever is what’s hardest. I tell myself that that’s ok. As long as I can save her. Each and every time. At least I can accomplish something for her. Which I couldn’t here. And even if it’s just a sad dramatic dream. It’s all I have left.
I’m so sad tonight as sleep escapes me again.
Today’s the day. The day we start again to share her story. And many more… #BecauseShesGone and #BecauseSheMattered. Please help me spread her face all over the internet. #GoGOLD this one month. Please share her pictures and tell them to Please share her story, and change your profile pic for pediatric cancer awareness month! Thank you. #KatherineTheBrave #DIPG #BeSomeonePositive
My child is number 29, in a class of 29. The newest student… I imagine her standing in line behind McKenna, and Jennifer, and the other 26 children in the lab, waiting for her turn to follow the instructions given. Smiling, and eager to do her best to follow the rules, and shine. Staring up, hoping she’s next..
I know this is a fantasy, but it’s helping. I know she’s actually in a Petri dish, in a lab refrigerator, waiting with McKenna, and Jennifer for her turn, and an even bigger part of life then we could ever give her. Repeat, it’s helping…
Story time: Katherine was involved in a recent study, and you really have to hear about this. I cried, smiled, cried some more… It’s unbelievable.
Synopsis from the study Katherine was in at Stanford and just released a few weeks ago. – High-Grade Gliomas (HGG’s) are a diffusely infiltrating group of cancers with a dire prognoses (Katherine had a glioma on her PONs). What is thought to be the tumor reservoir, the lateral ventricle (SVZ) for a range of HGG’s including adult glioblastoma (GBM) has been closely associated with decreased survival and increased tumor recurrence. Death… DIPG (Diffuse Intrinsic Pontine Glioma) is the most common HGG of childhood and the leading cause of pediatric brain tumor related death, with a median survival of only 9 months and a 5 year survival of <1%. DIPG tends to not only infiltrate the brainstem where it originates, but also spreads distantly to the lateral ventricle (SVZ).
The debate – Does the cancer begin in the stem cell niche or does it spread there for all Gliomas, adult or pediatric. DIPG clearly starts in the PON’s, and then spreads there, making it harder to treat, and decreasing the survival rate. This also makes DIPG an illustrative tumor type in which to discern these mechanisms for all gliomas.
Yes, Katherine’s is a teacher, and is teaching us things about how cancer affects all of us who could, or will be affected by it. Her tumor provided the Stanford team a rare and valuable resource for their study. Thanks to the team at Stanford, and Katherine’s tumor, we have a potential target for future therapeutic development against glioma invasions, and some insight into how to treat these tumors better for all of us. Yes, us…
In the picture below, Katherine is SU-DIPG-XXIX or SU-DIPG-29.
For more details on the study, go here: http://www.cell.com/cell/fulltext/S0092-8674(17)30823-1?_returnURL=http%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS0092867417308231%3Fshowall%3Dtrue
For more details on the team at Stanford, go here: med.stanford.edu/monje-lab/people.html#dr_monje
Thank you for taking the time to read this, and helping us prevent a number 30.
Jaime (SU-DIPG-XXIX’s mommy)