Monthly Archives: July 2016

School Days

The Placentia Yorba Linda Unified School District adjourned in memory of Katherine on June 21st. We thank you all for that, and for everything you have done for Katherine after her diagnosis. She loved going to school. She loved Glenview. She made wonderful friends in her short time there. She wanted so badly to be there more too. Although she just couldn’t towards the end becuase of her anxiety. She knew she was different, the moment she was diagnosed, and no matter how hard we tried, and encouraged her, she just could not hang.
I just can’t imagine the emotions of a child at 4, 5, 6, feeling different prior to diagnosis. Why can’t I play as long as these kids? Why does my head feel so much pressure? Is anyone else feeling this? I’ll just try to ignore it. The emotions. Which after diagnosis probably led to questions of Why me? Do they all know? Why is everyone staring at me? What did that kid mean by, “Are you going to die?” Trust me, we got it all… and so did poor Katie. I wanted to save her, assuming she would live forever, and keep her education and social structure moving forward. I wanted to make her normal, but I gave up trying after a while. I was encouraged to do what was best for her, it being a terminal diagnosis, and we did. She wanted to be home. Safe. Surrounded by family.
Her teacher came here several days a week at that point, and oh man she loved that. She loved Mrs. Sullivan, with all her being. Here is Katie with Mrs. Sullivan on June 2nd, my birthday, and 4 days before she passed. She was smiling here, but #DIPG took the visual of a smile away from her. Her freshly made bird house from Erin behind her. She was so proud of every accomplishment, because they were so hard to accomplish, and she did it.
I look back and realize that my body, mind, soul prevented me from seeing the truth of what was happening to my daughter at this moment in time. The fast decline. I saw her strong and whole, and here I see that she clearly is not. I am so sad about this. I am thankful that I didn’t realize it, but I am sad that I could have said and done more possibly before she slipped into her sweet quietness. For her, and for myself, selfishly… I had more to say. I know that feeling will pass with time. I just hope it does soon.
#KatherineTheBrave

#PleaseShareKatherinesStory

#LoveAndKisses

Kyleigh Took Care Of Mommy Today Katie

I cry all of the time now. Here and there. Home or while out. Driving is the worst… Too much time to think. It doesn’t matter where I’m going, or the time of day anymore. I just lose my shit randomly and travel back to the days before she declined, and then eventually onto her days of decline, and then to the present. The awful present. Then it’s all downhill from there. Every time. I wish I could hold my sweet precious Katherine. Just one more time. I want to squeeze those frail shoulders and scoop her up and nuzzle her head and cheek. Kiss her nose and say, “I love you mongrel…” “I love you so damn much…” I’m dying inside. I’m not me anymore. It’s like I’m hovering. Or running. Or both. I can’t maintain. I can’t focus. I just can’t. I try to hold it in. I try not to make other uncomfortable. It’s hard. I can’t stop it. It comes like a tropical storm of tears and pressure. It builds like a thunderclap and roars through my head and my heart, until the tears just flow, and flow, and flow. The storm… It takes over my senses and I can’t think of anything else but my child. How could this be? Why is she gone? What did we do? What didn’t we do? Was it a dream? Was she really here? Am I being punished. Was she?Everything is just so wrong… It’s just so wrong. And just like that, it progresses. I remember something simple. Something precious. And I think fondly of her. I remember what she really was and what would matter to her most. It’s a coping mechanism. I know it’s me subconsciously trying to stop myself from going into a panic. Maybe I just cry enough to move on for a little bit longer. I can do this. I can get through the next few minutes. Hours. The morning. The night. This meeting. Buy myself some time to breathe. Like a normal person. Remember normal. Like we used to be.
Kyleigh got me through today. She brought me through the emotional theme park turnstile which I now call life. She let me talk about Katie. She didn’t stop me. Who would? She’s worried about her Aunty Jaime. I could see it. She wants me not to be sad. But she misses her too. I reminded her of how much Katie cared about her. How important it was for for Katie that Kyleigh was happy. She lived, loved and breathed Kyleigh’s happiness. She cared about everyone’s happiness, especially mine as well. It was her biggest concern ever, that other enjoyed life. So Katie, guess what? Kyleigh made mommy happy today. She took care of that for you. Mommy cried and Kyleigh talked to her. She made sure mommy smiled and didn’t get too sad. We miss you Katie. Kyleigh misses you. Loves and kisses. #KatherineTheBrave #DIPG

Katherine’s Sisters Survived!

Thank you to Sam, Moriah, Skyler and Linda, for all that you did for the girls tonight after their car accident. We seriously don’t know what we would do without you. Thank you to my coworkers, especially Chen DW, for helping me get out of the office without having a meltdown so that I could get to my daughters. Thank you to the citizens that assisted them while waiting for the ambulance, police and firemen to arrive, and thank you to the policemen that talked to me and helped calm me down about the situation. Thank you to the staff at Placentia Linda Hospital for being uber amazing to the girls and getting us in and out quickly. The girls are ok. The car was totaled. They were T-Boned at an intersection. They ended up on the sidewalk. Oil everywhere. Huge bruises up and down their bodies, sore, maybe a hairline fracture, and emotionally upset, very emotional and lots of crying, although nothing’s broken and there are no head injuries. Thankfully. We are so very lucky. This could have been much worse. From the looks of the car, I don’t know how they got out. The last thing we needed right now. We are grateful.

Kyleigh!

Christmas 2015. Tensions were high. Cousin Kyleigh just would NOT smile. She was not impressed and not in the mood darn it! Katherine was devastated, because as you know, everyone just HAS to smile for their pictures. She kept looking back to the left, to us, to the left, to us. Her heart break was crushingly apparent as this went on. Is she smiling yet… Finally she let out a, “Kyleigh!” Nothing… So she give up, and gave a half smile herself. And then theres cousin Molly… Smiling… Desperately trying to ignore the tension and she just doesn’t understand why Katie could not let it go and Kyleigh would not just freaking smile! LOL! As such… The moms stepped in. A little lesson. To teach them just how silly they looked. They laughed with us, and finally, finally, Kyleigh smiled! I loved this night. I cry thinking about it. Nothing will replace this… Nothing can take these memories either. 
David and I were crying last night in bed, again, and we both realized, sort of at the same time, that we never recorded her feelings. We never took videos of her opinions or feelings as it related to the photos we took of her, current events, her emotions. We took videos she wanted to take, but we never selfishly asked her to express herself for our own benefit and memories. We are so sad about this. How could we have missed that. Our advice to other families, either going through this, or supporting those that do, sit your children/teenagers down and bring up something, or show them something and ask them how they feel. Ask them what they think of things. Ask them to share a story, and why the story mattered. Don’t respond negatively to anything they say. Just know it’s them, and they are growing. You will cherish it later. Whether you agree with it or not. We will never get that back, so don’t let that opportunity pass. For Katie’s sake. 
Loves and kisses Katie. See you next time. 
#KatherineTheBrave

#DIPG

#LovesAndKisses

Strong cancer warrior mamas!

I am in agony over the loss of my child. I’ve been reaching out for familiarity in this struggle and have been blessed to be welcomed into a strong community of women who have gone through exactly what I have. I am surrounded by some amazing cancer warriors. It helps to have amazing, giving, loving family and friends during the tragedy, and loss of your child. Additionally, a layer of support by those who understand because they have been in the exact same position you have been is so necessary.
We shared. We cried. We laughed. We bonded. Thank you Strong Cancer Warrior Mamas Tracy, Wendy, Kristine, Arisa, Ana, and Staci for listening to me and letting me vent!
#KatherineTheBrave #DIPG

“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

Wabbit Season

A rabbit just ate Katie’s poppy seed flowers. She planted the seeds before she passed, and she waited so patiently for them to grow. She didn’t make it to see them grow. It was beautiful though, when they finally did. I lit up when I saw it. And her and I talked about it. Well I did. That rabbit must have crawled up the planter and just ate the petals. I used to love that rabb
it. Used too…The problem is that Katie loved that rabbit too. Grrr! I’m so incredibly bummed. I’m wanna get ’em! #KatherineTheBrave #DIPG #WabbitFood