Monthly Archives: May 2016

I’m feeling fine even without a public outcry.

I would do anything to have only been judged publicly for neglecting my child for one second at a zoo. Bring on the public shaming and outcry. All the hypocrites can judge me all they want. Ya, I know, you’ve never turned your back on your child for even one second, ever, anywhere. You actually just never got unlucky, thank goodness for that. Doesn’t matter. I wouldn’t care in the least what they thought. At least I’d have my child with me, alive and healthy.
I’ll never judge another mom again for turning her back for one second. Shit happens. I feel like I turned my back on my daughter for years before she was finally diagnosed. Imagine that feeling of neglect. That guilt, with a living healthy child, can be squashed. Easily.
There are bigger, more evil, fish to fry in this fish bowl. We need to stop judging and start saving all of these kids society professes to care so much about. So much so that they create internet memes, and write comments on news articles, and their angry because mom should have known and this gorilla should have lived. What about our kids who are actively dying right now? There’s no dying gorilla in the room here, just suffering parents, siblings and families. Where is the public outcry for them??? What about the 4% of the 100% that we get? Why aren’t the ACS and NCI getting backlash for pulling out their guns and waiting too long to shoot, vs. shooting too soon. Who’s judging them?
Agh… Forgive me, I’m frustrated, but I don’t take it back. And contrary to what Katherine says, she’s not feeling fine, she’s feeling pretty crappy, in fact.
#katherinethebrave

#dipg

#PleaseShareKatherinesStory

#katherinedeservedmorethanfour

I’m #KatherineTheBrave, and I approve of this message!

#MommyTheBrave, and #DaddyTheBrave voted in the primaries today. Remember, our kids will continue to suffer the consequences of our choices at the polls if we don’t do something about it ourselves. Not being happy with our two party political system is no excuse not to vote. Not voting gives the least of your choices the upper hand. Think lessor of two evils, and go with it. Republican, democrat, libertarian, etc… Doesn’t matter. Vote and make yourself heard. Fight for our children, and our future. Thank you.
I’m #KatherineTheBrave, and I approve of this message!

“I’m feeling much better.”

Katherine hates the process of getting her throat suctioned out. She cries and her eyes water. She cringes and begs us to stop. She tells us she is fine, even when she’s not, so that we will just stop doing it. I talk to her through the entire process. I tell her I’m sorry. I wish I didn’t have to. She’s so much braver than daddy and I, and we would not be so brave. I remind her that it’s going to make her feel so much better. And then I rub and hug and kiss her. I’m tired of doing this. I’m sure she thinks I’m evil incarnate during the process. She forgives me each time. And every single time we’re done she is so worried about us doing it again, that she says this to reaffirm that we do not need to do it again. She is so adorable and precious and doesn’t deserve this treatment or disease.
Katie is getting up really early tomorrow to see the sunrise. And we are heading out again early evening to see the sunset. She sat on her couch all morning, starting at 4 AM, just waiting to see the sunrise out the window, before I realized what she was doing. We talked about it, but not until I went to shut the window shade did she say, “No, I want to see the sunrise!” So, it was too late. Tomorrows the day. I hope it’s beautiful. 
We’re selling shirts, bands, and stickers to pay for her meds. I’ll post some more sizes tomorrow, after I do a recount. Donations for the shirts, bands, and stickers can be made to jaimerieck@yahoo.com via PayPal or the GoFundMe at https://www.gofundme.com/katherinethebrave. Any donation for the items will do.
Thank you…
#DIPG #KatherineTheBrave‚Äč

I’m sorry

#KatherineTheBrave is completely immobile. She cannot move her legs or arms, strategically, 95% of the time. She is completely reliant on diapers. She sleeps most of the day. If she can stay awake long enough, she will eat, but swallowing is shaky ground and, more often than not, impossible for her to accomplish. Foods not processing in her at all, everything comes out at mush. This isn’t a newborn baby. This is a 7 year old suffering from terminal brain cancer. It’s expected, and as hospice calls it, “disease progression.” So we hurry, and wait. 
While we wait, we try to entertain her. She decided she wanted to do Legos today. We had no more! So I ordered two small sets on Amazon prime now, two hour delivery, and she had some to do. I hold them up so that she can see me do them. I cry through the entire process. So does David. Seeing her like this is killing us. She watches intently. In and out of sleep. Not able to move her fingers to help. She just wants to touch them sometimes. Just feel them again. So I let her.
She misses it. Being a kid. I’m dying inside. I can’t stand this time right now. I take back every negative thing I’ve ever said to her when I was frustrated. I told her that today. I am so sorry. I would get frustrated when she would act off, when all she was doing was struggling to be a big girl. Trying to be herself, and a kid. Inquisitive and interested in what we were doing and trying to learn her own way to move forward. I take it all back. I take everything back. I’d do anything to go back there again. Anything.
#thisisdipg

#thisishell

#dipg

#morethanfour

#katherinedeservedmorethanfour

I’m a bad kid.¬†

Finally an update:
We gave away a girls bike today. Ya… We were cleaning out our shed and David lined it up with our beach cruisers and I said set it over there, we can give it to Kyleigh. My sweet niece. So he did. Unaware of what we were doing. I was unaware too. The day goes along. Today my sister says are you giving that away. Ya… She takes it to my niece. As she’s pulling away I look at David and say, we just gave away a bike that was given to us and intended for Katie when she grew up. What in the world is wrong with us?
Isn’t that insane? How on earth could we subconsciously do this. Why would anyone do something so forward thinking. Their child’s still alive. Well, I’ll tell you why, when your child is diagnosed with DIPG, you are given NO survival rate. We walked out of that hospital on June 5th last year with so much trauma and denial, but the reality is always there. Eating away at you. So you prepare. We’ve been planning for Katherine’s funeral for 12 months this June 2nd. Imagine planning your child’s death for 12 months. In your head. You don’t actually plan it, until it progresses, but mentally and emotionally every time you look at your child you know life without them will be horrible, you dwell on the survival rate, and your living with that cruel fate until the tumor wins. So it’s hard not to suffer with the impending future.
No matter how hard we try to save her, at this time, and with these circumstances, this DIPG tumor will win unless things change. Katherine is the strongest person I know and she is struggling to exist. Anything that could rip the heart and soul out of such a precious child, with such a beautiful old soul, is the biggest, strongest, most evil thing which western or natural medicine can not beat. It doesn’t matter if its days, months, weeks, years, DIPG will win until something changes. When are we going to fix this? 
Recent symptoms: Katie dropped a pea from her mouth today, it landed on her chest. She couldn’t grab it with her hand so she tried to use her mouth. I cried. She can’t move her legs and arms. They are stiff and hallow. Almost as if she has strength to push back, but it’s misleading. She doesn’t even feel the touch. Hospice said this is disease progression tonight. I cried. 
After talking to hospice and our therapist, I have finally relented and brought the fact that she was sick up to Katherine directly. I asked her how she felt and if she wondered what’s wrong. I urged her to talk to me. Do you have anything you want to ask me. Do you feel like you want to say something. I didn’t push, just asked and waited doing other things, but she did have questions… “I want to ask about me being sick. Im a bad kid.” She cried. I died. Mom died. She repeated it over and over no matter how many positive stories we told her about being such a wonderful person. 
My patience is wearing thin. I’m wondering how we are still moving. Please understand that we are not seeing as many people as we normally do. It’s just something we have to do right now. Thank you all for your support. 
#KatherineTheBrave

#DIPG

#KatherineDeservedMoreThanFour

#MoreThanFour

#PleaseShareKatherinesStory

Moms turning 40

#KatherineTheBrave has spent the end of her night discussing my birthday. She wants to plan something special. She is such a special child. So caring and concerned about everyone. She wants me to celebrate. To be happy. To enjoy my 40th. My precious baby.
Katie deserves to grow up. She deserves to be an artist and teach others her ability to bring out beautiful thoughts from her mind onto paper and crafts. She cares so much that others are happy. She deserves to care, and touch, and feel and love the people around her. She deserves to make sure that people have great birthdays and see them smile. And that they have exactly 40 balloons on their birthday, because I’m turning 40, so to her that made sense. It makes sense to me too now. She makes sense. 
#GoGrayinMay statistics: Remember everyone, brain cancer is the number one killer of our children under 10 with disease. Cancer. Yes, you’ve read that right. I know sometimes it’s hard to believe that statistic. We cancer parents speak this terminology and mess with your psyche, and make you wonder, is it true? This statistic. Is it real, or just another angry mom, pissed to all hell because her baby was unlucky enough to be struck with that “rare” cancer?! Well it’s true, on both counts, I’m pissed to all hell, but I’m not full of it. I’m speaking the truth. And it’s time to believe me. More kids die of cancer than car accidents and abuse. Yes. And don’t get me started on just how many kids die. To cement this statistic for those of you still on the fence, I’ve researched the CDC.gov sight to prove it. We are lumped here, so it’s vague. But to even be listed alongside the top three killers of children on a government site is proof enough that enough is not being done. We have organizations to prevent child abuse. They will rip a child from a home without blinking. We have organizations to prosecute abuse and prevent car accidents from negligent drivers. Drunk driving laws and punishments stemmed from children who have passed due to this type of travesty. We have people for that, right? What do we have for pediatric cancer. Yes… We get 4%. The number one killer gets 4%…
Who’s with me?
#PleaseGoGrayInMay for Katherine and brain cancer victims!

#PleaseShareYourGrayForKatherine and tell

others why you’re wearing gray

This week is #DIPGAwarenessWeek for California.

#PleaseShareKatherinesStory so that others hear our cry and see the #TRUTH about this horrible disease.

#Awareness is key to saving our children!

Behind The Badge OC

Behind TheBadge OC continues to feature #KatherineTheBraves story, even when other media outlets will not. Thank you to Lou Ponsi and Steven Georges for coming out again and telling Katherine’s story for us, on the request of Erin and Kelly, and to fight #DIPG. I hope this is shared a million times!!!
#PleaseShareKatherinesStory

https://www.facebook.com/OCBehindTheBadge/posts/1206637882720478

Katherine Should Have Made The Party

Katie should have been at her cousins Kyleigh’s birthday party. Surrounded by presents, and giggling, her family, all the usual suspects of favorite friends, causing mischief, and everything. I’m so angry. I’m just so pissed. Instead she can’t even hold her own head up. Instead we had to shield her from the pain of watching other girls enjoy life, because she can’t enjoy anything. She would suffer more going than staying home and missing out. We created a separate party here with just a very few people. To keep her anxieties under control. What kind of insane world do we live in where a cancer has a zero percent survival rate. What kind of f’d up country would put billions of dollars into fighting a Zika virus that hasn’t affected nearly anyone vs. the thousands and thousands affected by cancer. I’m angry seeing the photos of this event. Katherine deserved more than four percent for all pediatric cancers. Katherine deserved more than one percent for brain cancer. Katherine deserved more than ZERO percent for #DIPG. Katherine should have made this party.
#KatherineTheBrave

#cantstopcrying

Will you hold me tight?

#KatherineTheBrave had a hard day. Before the nurse put the NG tube in I explained what was going to happen. In detail. She doesn’t appreciate surprises. She prefers to know her fate. Shes always faced it better this way. Katherine’s response after the description I gave of where the tube would enter and how it works, “Ok. (pause, contemplation, looks at me deeply) Will you hold me tight?” Oh yes baby, I’ll hold you so very tight. She didn’t move or whimper. She didn’t cry or wiggle. She stiffed upper lipped it. As usual.
She deserves more than this. That’s what I told her after she screamed at me tonight that she was mad and wanted to tuck everyone in. It’s a safety blanket for her, to make sure the family is in their beds and near her. I keep telling her none of this is her fault. She didn’t do anything wrong. So tonight after the last anxiety attack, she’s on my lap and I say it again, “None of this is your fault Katie. You are a good girl and you always did what your momma told you to do. Even when you didn’t you wanted to, you just were being a kid. You are such a good girl.” She then went limp. After a day of stress, and fears, and anxiety, her body basically said I’m done.
And she sleeps. Like a sweet innocent baby. Only this innocent sweet 7 year old baby is sleeping after having her throat suctioned out, an NG tube passing through her nasal passage, anti anxiety meds in her system, an empty starving stomach, and a murderous tumor slowly taking what little is left of her quality of life.
#thisisdipg #hernewreality #hellonearth #morethanfour #katherinedeservedmorethanfour #PLEASEShareKatherinesStory 

The New Normal

I just changed my 7 year olds “diaper” as she laid there unconscious and unresponsive. In my head I had visions of a child upset that it was bedtime. Saying, “Please mommy, one more story”. Wanting to sleep with her big sisters, just to get out of being in her own bed. Saying, “Goodnight mommy-sita.” Or Pew Pewing her daddy. Those days are gone. Months ago. Finding joy in anything is impossible for #KatherineTheBrave. It’s still hard to fathom that.
Tonight she would not respond to our attempts to wake her up, and she could not take down her pills or oils. For goodness sakes, she couldn’t even hold her own head up. I looked at David, he looked at me, “It might be time for a nasal tube.” His response was some sort of denial. Who can blame him… I’ve denied it for several weeks myself. She so much more aware at times, and others she’s just so out of it. It’s hard to balance anything when it’s always changing and so up in the air. Humans want structure. We crave routine. Cancer will cure you of your need for it, I assure you. I’m just so bummed about the recent decline. We need more time.

This nighttime delirium is common for Katherine lately though. Night times are harder for her. After a day full of anxieties over anything and everything you could imagine, she is just done. She fears the night. She fears it so much that she asks for it from the moment she wakes up, until the moment she goes to bed. Just so it could be done with and she won’t have to worry about it anymore. Almost like she wants to face it head on. After all of that stress, all day, she knocks out early and wakes up around 3 AM wondering what the heck happened. Scared. This is a routine. A new routine.

Well, I hope she wakes up at 3 AM again this time. That means she is still aware. We can take her in our arms and move her into our bed. Hug her. Tuck her in. Snuggle. And fall back to sleep. This means we get another day, because sadly, and according to the “rule book” on #DIPG, one day she won’t wake up this way. The way we now call “normal”. She will appear comatose, but she will continue to be aware cognitively. She will wonder why she can’t see, hear or feel us. She won’t be able to communicate this to us, nor will we be able to comfort her in any way. This child we are supposed to protect will suffer worse than any of us could imagine. She will get a punishment worse than any judge and jury could ever possibly hand down onto the hardest of criminals. And all because she’s a child, and not an adult, and because her cancer is deemed rare, and not valuable enough to invest in financially.

This is Diffuse Intrinsic Pontine Glioma. This is why we are angry. And this is why we will continue to fight.

#AllLivesMatter

#AverageLossofLife71Years

#MoreThanFour

#BrainCancer

#GoGrayInMay

#BrainCancerAwarenessMonth

#KatherineDeservedMoreThanFour

#PLEASEShareKatherinesStory