Category Archives: Health Updates

“I don’t want to go to heaven alone.”

“Weeks before she passed, she told me she didn’t want to go to heaven alone. I don’t know if there’s an afterlife but I do know that she did not die alone. She did not die in vain. She was loved, she is loved, and she will be remembered forever.” – Lauren Fontaine
#ThisIsDIPG

#DIPG

#KatherineTheBrave

#PleaseShareKatherinesStory

#MoreThanFour

#WithTruthComesAwareness

https://www.facebook.com/lauren.fontaine.923/posts/1728153394091060

Katherine’s Last Day/Katherines Legacy

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#LongRead #SorryForTheBook

Today has been one month since Katherine left us. I can’t not cry as I write this. I cry so easily now…

Katherine’s Last Day:
One month ago tonight, near 7 PM, Katherine’s breathing became labored again, and we’d assumed that she needed some morphine. Her cannabis oils were helping with 100% of the pain, but her morphine was added to assist with breathing. I called the nurse over and said, “I think she needs some morphine.” The nurse looked over the couch, and back at me, and back to Katie, and went stone faced, her eyes knowing… her words solemn. She said, “I just gave her morphine at 6:30 PM.” She knew… She walked over to Katherine, listened to her heart, and told all of us in the room, “It’s time… She will be going soon.” We went from crying, to screaming, to begging, to praying, all in a matter of seconds. I didn’t want to believe it, and I said so out loud many, many times. We loved, and hugged, and talked to her. We told her stories, so intently, so rapidly, as if we only had so much time, and we wanted her to take them with her, and this was our last chance. I don’t’ know if she heard us, I don’t think she did, but if you could bottle up all of that intent and attention to detail in that one room, and with those wishes and prayers, and they would mean something, they just may have.

Katie continued to fight for that next 30 minutes. She went back and forth between weak heart rates, and strong heart rates. Her body still. She looked at peace. I went to give her some liquids, and she bit down on the sponge. So hard that I jumped. I thought it was a sign… it was. Her organs, and her body, just did not want to give up. Giving up is unnatural for our bodies it seems, they fought so hard. No food for days, no fuel, yet they fought to keep her going, and with us. So naturally.

At 7:32 PM Katherine took three very hard breaths. Breaths so deep, that I had actually believed she was going to speak to me, and say something like, “Mom, you’re smothering me… stop!”, which is something she would joke about and say to her sisters, and I. I just stared at her, and looked around the room at everyone there. I stared back at her, than at them again. I kept saying, “No. I’m not ready. You’re not ready. Go baby. It’s ok. Do not suffer anymore, No, don’t go, not yet. Please don’t go. We need more time. Be at peace Katie. Mommy and daddy will be ok. We will miss you. We are so, so sorry. We’re just so sorry.” I had my arms under her neck, holding her, my hands on her, everyone’s hands were on her, as if that was going to save her. The nurse walked up to her at 7:34 PM, she listened to her heart again, and she said she was gone. My baby was gone. Just gone. It was so unnatural.

As family members were walking up to our home, to try and get there before Katie had passed, they knew. They heard the sobbing, and crying from everyone in the house all the way down the street. Our neighbors were so kind, and tried their best not to intrude, as they said little prayers and kinds words. We just went numb. The whole house. We were relieved. We were torn apart. We were heartbroken, and out of our skulls, all at one time. It was like floating above everyone in the room, and watching it from a different angle. The emptiness. 12 months of hell, and she was at peace, and our lives just tumbled down the rabbit hole. I didn’t feel like I was inside my own self. I can’t even describe what I was feeling, yet it wasn’t painful, just surreal.

Katherine’s Legacy:
Something that I’ve realized in the past several weeks is that Katie has made a huge difference in those around her, in the short 7 years of her life on this rock. I’m still trying to determine the reason. There are so many obvious black and white explanations, however, the gray area, which is my usual go to conscientious choice is what I’m aiming for. Right now I’ve come up with the following:

1: To teach momma how to blow the best milk bubbles
2: To teach mommy that she deserves a 2nd chance, no matter how many times she’s made mistakes as a mom
3: To show her sisters how a pro paints
4: To show the world that you can still love, while suffering a terminal illness
5: To teach cannabinoid opponents that they are wrong
6: To teach cannabinoid advocates that this is worth fighting for
7: To teach daddy just how much a person can love him, with no guilt, regardless of how much he thinks he doesn’t deserve it
8: To teach her doctors, teachers, friends, and family (cousins), patience during the most critical of circumstances
9: To teach us all that saying, “see next time”, and “loves and kisses” is so important, no matter how hard it is to get up and say it, or do it

If you have any ideas of what Katherine’s legacy is, please feel free to share them with us…

#KatherineTheBrave
#DIPG
KatherineTheLegend
#MoreThanFour
#PleaseShareKatherinesStory
#TruthBringsAwareness
#LovesAndKisses

Trollers

I want to personally thank everyone for taking care of the trollers on Katherine’s page. You are all so supportive, and understanding. Even when the #truth of our posts, are tough to swallow, you know we’ve lived it, and you are supportive of our decision to share our life and spread the word about this awful disease. #KatherineTheBrave received a 0% survival rate. She was given 0% funding for her cancer, #DIPG, from the government. We had to reach far into the depths of our lost souls, and beg for any hope in this nightmare. We fought tooth and nail, and were not awarded for our efforts. She suffered… so much. Our baby suffered. We promised Katherine to fight for her. We promised her that we would use her story to keep other kids from suffering her fate. We promised her transparency. She wanted us to share her story. She smiled for every picture. In fact, if she didn’t smile, she made me delete the picture, and take it again. She’s not smiling anymore. At least here on earth. But that doesn’t make this any less tragic. So, if they don’t want to witness the truth about pediatric cancer, than I am sorry, but I will not stop showing the hell we experienced, that she experienced. I know it’s hard for families going through this as well, to witness the possible future, but it’s real, its raw, it’s what they are experiencing too, and this is why they can’t look at it. It’s hard, I know…. However, my posts are no more graphic than what we saw every day at the hospital, and with our new cancer families children, who have died as well. We were surrounded by it. Why is Facebook any different? It’s not, and its the best place to make her name known, and to spread the truth, and to help find a cure. As I’ve said before, confidentiality and secrecy is what killed my daughter, transparency will help cure this awful disease, DIPG. As people see it here, and as they get angry about this truth, it will scream volumes over a few stragglers in a hospital, experiencing it first hand. In Katherines name, I will not stop showing the truth, until we have a cure. I apologize for anyone we’ve offended, but feel free to remove yourself, or… we will. You could also choose to become witness to this tragedy as it played out to us, think differently, and help us fight.
Thank you… #MommaTheBrave and #DaddyTheBrave

Loves And Kisses

#KatherineTheBrave spent the day with her family and friends watching old photos and videos of her as a much younger happier child. We wanted to remember her. We wanted her to remember her, as well. We listened to Hawaiian music and read stories. We laughed and giggled, and at some points we could feel that she was with us.
I planned this post for months. I had the perfect words to say. The details of those thoughts are lost to me now. What can you say on a day like this. I’m sorry. You deserve more. We as a society failed you. Don’t go. Let go. We love you. Goodbye…

 

Our sweet adorable Katherine passed away this evening at 7:34 PM, in the loving arms of her family and friends. She is singing now, skipping on clouds. Playing pain free with her friends. Eating sherbet. Tracking rainbows, and everything she did before this horrid cancer took over her precious little body. 
Thank you to everyone for supporting us. Thank you for loving our daughter as your own. We could not have done this without every single one of you by our side.
Goodbye Katherine. Loves and Kisses…
#DIPG

#KatherineTheBrave

#PLEASESHAREKATHERINESSTORY

#MORETHANFOUR

Breathing

*GRAPHIC – BUT NECESSARY* *UPDATING WITH TRANSPERANCY*
#KatherineTheBrave is struggling to breathe. She sounds awful and we are suctioning her constantly to keep her from suffocating. We are on 24 hour nurse care and we have her in our arms constantly. She yelled at nana this morning to stop kissing her, so she’s still there. 
Last night was hard. She started labored breathing at midnight. Foamy mouth. It’s a bad sign. I remember from my sweet grandmother as she passed of lung cancer. Somewhere in between the suctions, and caressing her tired muscles, I fell asleep. What a slumber. A hard 3 hours. When I woke up she was hot and breathing more heavily than normal. I reached over to touch her and she must have realized I was finally awake, because she leaves over desperately to look at me and her eyes were wide and begging me for help. Her eyes screamed “momma”. I fell apart. This poor child of mine was alone and awake suffering for lord knows how long, and when I woke up she probably thought thank goodness she’s going to save me. I felt like the worst mother. I ran to the kitchen and got every drug she was due for and more and dosed her and calmed her down, called trinity nursing, and held her. Within 10 minutes she was breathing slower and was much cooler. My poor baby. My one goal was to NOT let her suffer and I’ve failed. I will not fail again. I don’t care if I don’t sleep. 
I cried all morning. I can’t stop. She’s going. I know it. I’m dying a little each hour as she goes. I know it. We all are. 
#KatherineTheBraveDeservedMoreThanFour

#DIPG

#FuckDIPG you’ve ruined my life!

My old soul

My old soul… Hospice has given her two weeks. This is not set in stone. By any means. Hospice said she may last longer, but the body can only take so much. Her words, “I can’t imagine her dealing with this for more than two more weeks…” I thanked her for that. Honesty and transparency mean the world to us right now. So maybe longer, but our best bet is to plan for this event within two weeks so that we have our head together when it does happen. The worst is yet to come. I suppose. 
This simple life we all go through every day, blindly, is so terribly hard on Katie right now. Getting up at 4 AM because she can’t sleep. Bathing is miserable for her. Watching her hurt and cry, struggle to breathe, eat, swallow. Wetting herself as she pleads with us to move faster and allow her to pee in a toilet like a normal child would. She got extremely sad because she can’t make her other favorite cousin Molly’s birthday party. She asks why the kids outside are laughing. I haven’t shared but her school has a carnival soon. She’s going to miss it. That one hit me hard. Tori and Alissa never missed their elementary school carnivals. She even struggles to eat her last favorite meal, sherbet. She is struggling to live, period. 
After all of that and more, she fights. She wants to be normal, and be here, with us. She still loves hugs. She doesn’t smile, but she loves them. Moms can tell. She yells at us sometimes, so she has some vigor. She thinks she can still drink and eat. She keeps trying.
However, I want to say let go #KatherineTheBrave. I refuse to allow my child who once looked right through people souls with her beautiful solemn stare, as if she could see your true inner being, suffer any longer. She deserves peace. Let go. Don’t suffer anymore. I’ll take my two weeks with joy and do whatever you enjoy doing. I’ll do Legos for hours. See 14 sunsets and 14 sunrises. Wake up to you 14 more times. As long as you are at peace and comfortable. Not suffering. Playing with other kids, in whatever is next for us. If I get more than 14 days and nights, I’ll be grateful, as long as they are all joyful days that you are not suffering. I just want you to be at peace. Whatever that takes. You deserve joy, and only joy. It’s the hardest thing for me to do, to tell you to let go, and I haven’t told you yet, I may never say it, but it’s what I want to say. I want you to be at peace, and if leaving me gives you that, than so be it. You deserve happiness and joy. You deserve peace and serenity. #KatherineTheBraveDeservedMoreThanFour
I love you Katherine and I’m so sorry. I’ve never been so sorry for anything in my life. I am filled with sorrow and sorry’s and I can’t tell you how much stronger you are than I will ever be. My big brave baby. 

#DIPG

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 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​

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