Category Archives: Health Updates

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!

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

Donation

Please #GoGrayInMay Katie would love to see your gray ribbons and outfits this May. Please tag her, your mom, sisters, and/or dad in your pics! Share with your friends and family. Ask them too go gray for the #1 killer of children with cancer under 10!!! We need your support and We want to share on her page!
Right now, as a #DIPG family you are told your child has cancer, your child will die, please start palliative/hospice care, have them suffer through radiation to give them more time. You’re told to “please donate your child’s tumor to science when they pass”. You will fill out autopsy forms before your child even declines. Staring at the trace of a body on a form knowing a pathologist and a mortician will fill out this form for your child/ of your child. A child they’ve taken away from you way to soon because it must be a viable tumor. It’s hard to do. It’s hard to hear. We know… However, it’s necessary that you know this, and for science we do it. We do it so that other families will hopefully be saved from this hell we live and so that they won’t have to do this. We speak, fundraise, donate so that other families will not feel this pain.
The attached is how and where #KatherineTheBraves tumor will go to. So please support us. #PleaseShareKatherinesStory which may help motivate the support of others, and help us raise awareness, which we need so desperately!
Thank you!

Lucky

Katie had a lot of visitors today. Some we missed and some we were able to spend time with. We can’t thank you all enough, for all that you have brought to us, the support… Emotionally, financially, and physically.
Because of you #KatherineTheBrave had a better day. And although I wanted to make this post happy and joyful, because she really did have a good day, we are not afforded such luxuries, and the #truth is the only way we are going to cure this cancer. We know it could all be gone in seconds with #DIPG. Every day is a roller coaster for us. Yet, we are lucky. You heard that right. Even with Katie’s current suffering we are lucky. She is aware. Most of the day. I can still say I love you, and hug her, and she can feel it, and say it back to me. Right now there is a child out there (or rather many) with DIPG who is in a living hell. Many kids currently suffering with DIPG are further into their diagnosis and they can’t feel their loving families touch, or even respond to it right now. They are fully cognitive, yet trapped in their own minds, unable to move. Petrified. Alone. Imagine that…

This is #NotOk. And this is why I ask you to #PleaseShareKatherinesStory. Because #KatherineDeservedMoreThanFour and #4PercentIsNotEnough!
Latest symptoms:

1: Walk on her own freely

2: Eat on her own holding a spoon

3: Grasp or hold items for extended periods

4: Go to the bathroom on her own

5: Speak and express herself frequently

6: Eat Sherbet alone

7: Build Legos

8: Get in and out of bed

9: Swallow her own saliva

10: Control hiccups

11: Play with her favorite cousins and friends

12: Left eye is swollen and hurts/rolls around

13: Bring up phlegm

14: Drooling

15: Fears of being alone

16: No longer able to color

17: Anxiety

18: Swallow normal bites of food

19: Sleeping normally

20: Can not grasp a paint brush (devastating)

21: Requires a wedge to sleep

22: Frequently requires a suction machine

Bath time!

Well… We can’t begin to explain how a child with #DIPG can go from barely being able to function normally, wetting herself, not being able to hold a crayon, crying and sleeping all day, to feeling great the next day and being in good spirits. We’re too afraid to stop and question it. #KatherineTheBrave is having a great day, and that’s all that matters! She didn’t even cry about her bath! Doesn’t she look relaxed? Me next!!!

Choking

Thank you Lydia and Linda for your help tonight. And thank you David for attending Alissas award banquet for me. Katie had a long day. It was just a long, long day. She choked on her first bit of food tonight. It was silent and had I not been looking at her, we wouldn’t have even noticed. It scared her to death. I’ve learned from countless parents and Dr’s that this is a very scary, and bad sign for a #DIPG patient. We are concerned. Tonight she slept early. She needed it. And so do we… So off we go. Here’s are some pics and a very, very scary statistic that we should all share for #GoGrayInMay. We are hoping for better luck tomorrow! Thank you so very much everyone. Goodnight… #KatherineTheBrave

This Os t Hollywoods Scare Flick

*Graphic* #PleaseShareKatherinesStory #KatherineDeservedMoreThanFour #ThisIsDIPG #ThisIsBrainCancer #DIPG
She was like this all night. Raspy. Congested. Struggling to breathe. We haven’t slept at all. If she doesn’t sleep, we don’t sleep. Everyone pays the price for this cancer. However, these kids pay more than anyone. Nothing we feel could ever even contribute an equal amount of pain and suffering to what my precious child is going through right now. She deserves to live. Right? So why is this freaking happening? Last night, or this morning, (I can’t remember because I didn’t sleep at all), I had visions of Katie running through the house, calling for me, asking for a snack and what we were going to do that day. Eyes wide, I gasped and pushed it down. Not now. Not where she can see me. Those happy days are GONE. And they are gone because of #DIPG. Imagine a child running and playing, and hugging with all her might, giggling over her dads silly jokes, suddenly pulled backwards in time and her life source ripped from her. She is lying there, lifeless, and helpless. Drooling, mumbling, searching with her eyes for answers. This isn’t the stuff of movies. This isn’t a dream, or hollywoods latest scare flick. This is Katie’s life. Right here. Right now. #MoreThanFour #4PercentIsNotEnough

Help

*Warning – Graphic*
So for today’s #GoGrayInMay post I wanted to mention the supporters of our children suffering with brain cancer. Thank you to all the family, siblings, friends, people/strangers who give moral, monetary, supplies, food, or any kind of support, period. You suffer too. Sometimes I think some of you are suffering just as much as we are in all of this. The people that brain cancer affects, and the ones left behind in its wake, are the true sufferers. Katie deserves more, and so do we, right? Why do we have to watch this? Something needs to be done. You have had to hold us up. Show up with items we needed. Sat with Katie while we ran errands. Assist me in bathing, feeding, and being there to do things as simple as loving her when I just couldn’t give anymore. Your well intentioned support is the only thing that’s kept us afloat emotionally, physically and financially. You shop for us, clean our house, sit with us as we lament on our current situation, reach out for additional support for us, and just care for us period. We’ve had many people send, deliver, and just show up in general to help. I’ve had many friends help me bathe Katie because of my back. To give an example of the gravity of this task, I’ve attached a photo. Katie HATES baths. She hates them more than not being able to eat sherbet. That should explain how hard this task can be for a child we don’t want to have anxiety, ever… I wanted to share this photo, of Katie and Jill, so that you understand how hard it is to be our friend right now. Yet, here you are. Thank you, and this is why we GoGrayInMay!
#PleaseShareKatherineStory #MoreThanFour #DIPG #FourPercentIsNotEnough #KatherineDeservedMoreThanFour #GoGrayInMay #Truth

Update – Katherine’s OK

***Warning – Long Post***
Important stuff first. Katherine is ok, we have just been inundated with items due to her increasing symptoms, so we’ve been rushing some things through in the past few days. We apologize for the lack of posts, but I have just not had ONE second to do so. We are watching our childs life disapear before our eyes, and it’s wearing on us emotionally. So much so, that we are mentally exhausted every single moment and what little we have is focused on our kids. We meet/talk/confer with Hospice daily. Our main goal right now is making Katie comfortable, happy, and keeping her peaceful. She shouldn’t be stressed at all, and I’ve expressed that to them. If it was me, I’d want happiness, and that’s what she will have. Hospice is amazing, and they are on the same page and totally on board with our wishes to be one step ahead of her suffering. I promise we will try to get on here more as the days continue to move along. Thank you all so much for the well wishes, and for everything you have said to us and to Katherine to encourage her to fight. Here is a list of her latest symptoms (these symptoms come and go, some are permanently gone, some are increasing):
1: Walk on her own freely

2: Eat on her own holding a spoon

3: Grasp or hold items for extended periods

4: Go to the bathroom on her own

5: Speak and express herself frequently

6: Eat Sherbet

7: Build Legos

8: Get in and out of bed

9: Swallow her own saliva

10: Control hiccups

11: Play with her favorite cousins and friends

12: Left eye is swollen and hurts/rolls around

13: Bring up phlegm

14: Drooling

15: Fears of being alone

16: No longer able to color

17: Anxiety
I share these symptoms with everyone to bring awareness to this horrible disease, and to all of the human blessings that it slowly takes from our children, our child, so rapidly. It’s an attempt to take you into our world, and as graphic as it is, our honesty is necessary to push for funding and support. The more people aware, the more funding we will receive for this “rare” cancer.
And even through this all, with all of these symptoms, she smiles. She smiles a lot… She insists on others joining her, and she wants to live.