Go Gold Pediatric Awareness Football Game

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’m feeling much better.

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.

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.
—> https://unravelpediatriccancer.org/notrare/
“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

I found her!

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.

Because She Mattered

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

Jaime (SU-DIPG-XXIX’s mommy)

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)

She’s bigger than school

 

Katherine should be starting school tomorrow. 3rd grade. One of her sisters is a high school senior, and the other a sophomore in college. This countdown is sobering… We’ve seen it in mourning family posts a hundred times in this one week alone. 
So, I got my sad pictures ready. Kindergarten… all smiles. 1st grade… sadness. Thank you steroids. No 2nd grade. No 3rd grade. An empty doorway. An empty walkway. An empty space. Death. How could I let this happen? I kept thinking, with my head hung low… 
But then I realized something… Something I haven’t shared with you all. And that’s where she truly is, and what she is actually doing. How she’s not only a cancer fighter, and tumor donee, she’s a teacher, a traveler, a successful plot twist to a horrible outcome, a wise and knowledgeable force to be reckoned with and studied throughout the world, by those with the bright minds to understand her message. She’s a juggernaut in the pediatric science world, and we are light years away from her amazing grace. She’s a cure. 
As September goes along, I’m going to bring you into Katherine’s new world. Her fight. I’m going to beg you to change your profile into her picture and share her story to encourage you. You’re going to learn things, cool things, as I learn them, and as she’s already mastered them.
Thank you for coming with me. We start tomorrow.

MNO

I am proud to announce that I will be speaking at the Mama’s Night Out Livermore event alongside, Libby Kranz – Jennifer’s mommy. Thank you for the opportunity to share our daughters story and the reasons why our families need your help. Jaime King (Katherine’s mommy) https://unravelpediatriccancer.org/mno/mno-livermore-2017-guest-speaker-lab-info/

Go Gold

Will you #BeAPositiveForce and #GoGold with your profile pic this September for Katherine the Brave? Please change your profile pic to a child fighting cancer in September. You are 199% approved to take Katherine’s. Show people why she mattered. Thank you… #BecauseIMatter