We missed you at your birthday dinner Katherine. We went to your favorite place and ate all the spaghetti and ice cream we could. We hope that you heard our thoughts and whispers to you. We are so sorry we couldn’t save you. We would have done anything to have you here with us. You were a beautiful vibrant candle burnt out too soon sweetie. You deserved more time and you had so much more spark to give. You were our old soul from birth. Daddy, mommy, Tori, and Alissa miss you so much. What are supposed to do now… without you.
Mommy made this video for you. She wishes you were here to see it. Maybe you can…
#katherinethebrave #dipg #forever7 #dontjustbesorry #lovesandkisses #seeyounexttime #rainbowsherbet #pleasesharekatherinesstory #loveisall
PLEASE SHARE KATHERINE’S STORY: I know this is very late, and would have helped had I shared it hours ago, but I just had an epiphany. Katherine’s birthday is today, and she’s not here to enjoy it. She received a terrible fate and handled it like a champion. A fate that would crush many adults who’ve lived a long life. And, everyone following Katherine’s story wants to help in some way, but they can’t for one reason or another. I feel the same way. Some days I can barely get out of bed and that’s my contribution to life. Well here’s how you CAN! If you would like to help cure the cancer that took Katherine’s life, you can here. We donated Katherine’s tumors for research, that was her contribution. Her tumors are being used to save other children, like yours. She will never have another birthday, but we can help other kids not lose theirs. Pay it forward. #forever7 #lovesandkisses #rainbowsocks #seeyounexttime #pleasesharekatherinesstory #katherinethebrave #dipg https://my.supportlpch.org/fundraise?fcid=747343 If you donated, let us know so that we can thank you. Love, Katherine’s family
Update On This Day 2017: This is Katherine resting peacefully in February 2015. This is her before we could even imagine how brave she really was. 5 months before diagnosis, when we were told, and didn’t believe, that she would not survive. That she would slowly succumb and her body would fail her during the process. One year to the week before we were told that the MRI results were not good and there was nothing left they could do to try and save her, and appease our eagerness for her to live. What I realized now, and what I didn’t know then, could never have prepared me for that day. Devastation isn’t even on the scale of meaning for emotions after that realization. As you stare at another human being telling you that your child isn’t worth fighting for anymore. I stayed strong for Katherine. I smiled for my other kids. Let’s make memories we said. Let’s go now… smiling. I sat silent a lot, and felt as if my heart was as thin as tissue paper. I visualized it slowly blowing away in the wind… I felt crushed. Yet, I had no idea what true devastation was… that crushing feeling would grow. There was so much more to come. So much more strength and heartbreak to come.
I was sitting in my bed last night, just zoned out. Emotional, after being back with my husband after 6 days away with the girls. He stirred up so many emotions in me. But there it all hung, unsaid… There was so much that only he would understand, but I just couldn’t speak, because my thoughts would ruin his night. So I smiled… and played nice. But I could not move past it.
These thoughts stayed with me, all night. The day Katherine passed. Her face when I found her struggling in her final hours. Her continued struggle to let go at 7 years old. Her fight to not die like this, and to give in to her own struggling bodies demands. I sit in the bed she was dying in, and I feel like it’s a million miles away from here. It feels so unreal. Did it happen right here? When was she in my room? Who carried her weak dying body from the bedroom to the living room? Who was with us as she died? Recalling their faces. Have I thanked them? Did she wake up again after that final struggle? So many things I don’t remember… SO many things I can’t pull out of my brain. I just want to rip it out of my body and punt it across a field. I can’t make it stop. Knowing now that she was dying, and so many things were left unsaid. What was the last things she heard. What the hell were they? Did she feel enough before she slipped away? At the time I didn’t see these as her final hours. Maybe I refused to. Maybe it was too much mentally. I realized so much too late. Everything I said to her beyond those final moments was more than likely not heard… She was gone. I missed my chance. I know that now. The one thing I swore not to do for 12 months. I planned to say so much and only very few things got the time they needed. For 12 months I planned to not miss a word as my child was dying. To be there mentally, and emotionally for her. She was trying to tell me in her own way before she passed, and with her eyes, that she was going. So many things. “Mom please stop the pain, mom please tell me it’s going to be ok, mom what do I do…” I missed it all. I just wanted the confusion and suffering to stop, so I gave her the things you give to stop it, and she slipped into her comatose state. Forever gone even before she stopped breathing, and her little heart stopped beating.
Katie’s 8th birthday is this Sunday. I can’t think… my brain is fried. Anyone I’ve spoken to today isn’t getting coherent and complete sentences. We’ve lost Parker. This has brought up so many pre-existing regrets for me, and my only advice I could give was “say what you need to say now. Say it and don’t hold back. Ask questions. Ask him everything… before it’s too late.” My regrets brought onto them. I am so sorry for how little I could support them. Welcome to a hell worse than 12 months of a diagnosis and a 0% survival rate. Welcome to the hell of living without your child. Let me introduce you to your new best friends… regret and sorrow. They can take the spare bedroom, will get up bright and early, and do not need a wakeup call.
“I can see the sun settin’. It’s casting shadows on the sea. I can see the sun, its setting. It’s getting colder, starting to freeze.” – Dallas Green
It’s a cold winter here. Sort of like my emotions lately. Frozen in a parallel universe of BC (before cancer) and AD (after death). I just can’t stop the flood of guilt and regret from Katie’s struggle. Every single time I see her picture or remember her in a place we’ve already been, like here, a whisper slips out so quietly so that others do not hear me, “I’m so sorry Katie Baby.” Because I am. I’m just so very sorry. Just saying the words evokes tears. She suffered more than any adult I know could handle. She fought so hard to hide it. For us… most kids fighting this battle do the same. Even when they want to give up they still fight for us. It’s just simply not fair. I wanted more time. More of a chance. I sit here in a gifted luxury suite, in mammoth, surrounded by the most amazing and giving people, a week before Katherine’s first AD birthday, and I’m still so heartbroken and traumatized by the past two years of my child’s life. How could this happen! She was getting older. Easier to travel with. We were vacationing more. And her life was stolen from her right when she could appreciate this existence the most. So I sit here. In my fancy digs, crying… watching the beautiful snow fall down, and the happy families clomping on down to the gondolas, excited, and I cry. I feel happy and warm for brief periods of time. I share those emotions. Until… So where’s my silver lining. Why can’t I see it. Maybe the lack of clouds in the sky. Maybe the cold chill will clear up. And the one in my heart… Maybe tomorrow. Always tomorrow. We’ll try again tomorrow. #SeeYouNextTime #KatherineTheBrave #DIPG #LovesAndKisses
#PleaseShareKatherinesStory #KatherineTheBrave #DIPG Today is #WorldCancerDay2017 Every share of Katherine’s picture causes awareness. Make people ask questions. Make them ask you why my precious baby lost her life and was taken from us. We need awareness. We need people to see how awful this disease is “before” they’re affected. Katherine deserved so much more than a 0% chance of survival and 7 years of life. Thank you to those of you who fight along side us, and to those of you that share this for us today! #LovesAndKisses #RainbowSocks
#pleaseshareaidansstory In the blink of an eye everything can change… Visiting this little guy today. #FightingForAidan I’m so proud of my friend Elisha and her Dad for doing a stand up job in making sure Aidan is happy and comfortable during this fight. He wouldnt be able to do it without you two. Aidan’s local friends and their families have stepped up to build a wall of support for our buddy. Many of you may not know but Aidan, my best friends son, was diagnosed with the same very cancer his friend, my daughter, Katherine had, however this cancer is on his spine. Unbelievable, right? He has surgery in a few weeks to fuse his spine. So much is happening. So much is changing. Thank you for your support… He could use it. www.facebook.com/fightingforaidan #katherinethebrave #dipg #aidandeservedmorethanfour
I can’t breathe… I know that face. I know that sound. I will never forget it. It’s permanently etched in my soul. When I’m dying, and leaving this earth, my miserable existence, and painful ending, will never compare to the suffering I experienced while watching my small child whither away after a year long battle with a cancer that’s never lost the fight. This right here is the sound of your life changing forever. And you can’t go back. You can’t fix it. You can’t say never mind I’ll try this instead. Can we see that last scene one more time. This time show more effort and make better choices when it comes to your kids life, ok… You are completely surrounded and your out of bullets and your petrified. Even surrounded by family and friends, your are completely, and utterly, alone. Drawn in to the moment, giving every last bit of energy you have just to ensure that your child dies a peaceful death. That’s all that matters now. Their comfort, because you couldn’t solve any of the other problems they were burdened with after diagnosis. At least we can give them that. Sad, huh? This is DIPG folks. This… right here. When I ask for a small donation, or a little help with a lemonade stand, or a penny here and there for a lab fighting this monster, this is why. Jennifer, McKenna, Katherine, Parker, (fill in blank)… Which kids next? I can’t breathe. I just can’t… We’re not doing enough. We’re just not.
“Warning: This video may not want to be viewed by our loving DIPG community.
After discharge from the hospital, Parker was clearly more comfortable and in less pain. We are so relieved we moved forward with the procedure rather than just resume hospice as some doctors seemed to be recommending.
We are keeping our superhero as comfortable as we can. His breathing is slowly becoming shallower and labored, and fluid is building up in his lungs and airway. Morphine helps to control any pain and relax his body allowing him to breath easier.
A couple nights ago, when this video was taken, we were prepared to watch and assist in whatever way possible, with the process that is inevitable with DIPG. His body has started to change; this is what dying is, at least for our Parker. Life and death, such incredible juxtapositions.
Standing strong, being alert, trying to listen to the little words he has left, medicating, loving, supporting, maintain composure and compassion…it is now our duty with this little man. Nurturing what remains of an enthusiastic and incredibly smart boy–who is still incredibly smart–but now locked in a body that refuses to allow him the freedom of life. This is DIPG, right here. We have had a year to “prepare” for the hours, days or weeks that are to come, but alas, no amount of time is enough to make it easier.
Losing a child is like having deja-vu all day long, wondering if the life you had, the joy, was every really there. realizing something’s missing but just not being able to pinpoint what it is repeatedly throughout the day, and always worrying that something horrible is around each and every corner causing you to live in constant fear, all at the same time… At the end of this daily routine the loss of a child lingers. A reflection of a time when you were happy. Standing there. Staring at you. Reminding you of a happier time.
Princess Repunzel came to visit Katherine. She was so excited. She loved this song and I’d like to think it brought her a sense of freedom. An escape from what was binding her. She was so very into it. But in the end, as in her life, she wore out… could barely raise her hands, or hold her body up. She was tired and I could tell it frustrated her. I’m so sorry Katherine. I feel this world totally failed you. Past indiscretions and a lack of care for our children put us where we are today, and it’s unacceptable. I hope we can change that. And soon…