Monthly Archives: October 2015

Survivorship

Last night was one of the most moving and emotional nights that our family has had in a very long time. I haven’t been able to post since Friday night, or respond to any messages or posts, and I apologize. I PROMISE you all that I will get back to you on everything, if not today, very soon. I have texts, eMails, comments, messages, you know I will, I just have to go through them one by one. I know you are trying to help us, and this is why I wanted to share with you some details on why I’ve been offline. Friday night through Saturday morning I worked. Until the wee hours of the morning, and then I woke up and worked some more. I worked my butt off to get caught up with things that have been falling through the cracks at work. I went from 1200 emails to 80 well organized project lists. What a relief, and I felt like a huge weight was lifted. I felt like I could breathe. I did that for two reasons: 1) to be able to focus on my family this weekend and accomplish the things I promised some friends and family we would participate in 2) support the cause and be there for people who are fighting for my daughters cancer. My friend Jenni, Greg, and Stacey, my cousin Kanani, Bishop, nephew Noah, niece Kyleigh, daughters Tori, Alissa and Ciara all took Katie to a Pediatric Cancer Walk, Starry Night in Griffith Park. They walked 2.5 miles, met wonderful people, and then waited to release lanterns in support of this cause. I cried when I received the pictures, AND I showed it to everyone. All night. “Look at what my friends and family are doing for and with my daughter.” “I am here fighting for her cause, she is there fighting for her cause too.” I felt proud. And I should be. She is a brave child and we are all her brave warriors! I am surrounded by the most bravest people that are not afraid to fight with me. They are not afraid to look at a child in the face, who isn’t herself, and say you can fight this! That means so much, and they understand that I can’t be everywhere at once, and they still love me for it anyway and rallied to be there with her for me. That feels good. So while they were doing the walk and joining as one in support for Pediatric brain cancer, David and I were attending another event. We spent the entire night talking about Katie, and meeting new people, and sharing stories. Learning, crying, enjoying our time to be in the moment. We were all there with the same basic want, to do more. And we did. Max Love Projects, Farm to Fork event is in support of Survivorship. That word, Survivorship, means we want kids to thrive before, during and after their cancer diagnosis. You see, many kids don’t die from cancer, but end up with other illnesses and don’t survive those illnesses either. I’ve heard stories of kids getting the green light, and then having hemorrhaging in the brain from radiation, and passing away. Or strokes, and heart attacks. The list goes on, I could go on… Can you imagine that. Going through all of that, celebrating like you never have before because your child is not going to die from cancer, and then your child dies of a side effect of what was supposed to save them?! Shocking news: after you survive cancer, you don’t get a pat on the back and are then sent out the door to live a nice life. You suffer, forever, with debilitating side effects from the radiation, chemo, after effects of you treatment. A statistic: by the time a child who survived cancer is 45, if they’ve made it that far, they have a 95% chance of having a chronic illness that will affect their life entirely. Thank you for that statistic Audra and Justin. Yes, you read that right friends, 95%. It doesn’t have to be this way. We can make it easier for kids going through radiation and chemo to have better access to good food, healthy supplements, and nutrient support for their brain and body to heal form the inside out, naturally. CHOC is on board, and Max Love is making it happen with the help of many supporters and sponsors and volunteers, and they need more always, so please consider reaching out to their organization. We know that there has never been a survivor of Katie’s cancer, but we are hopeful, and that statistic scares the crap out of us. She deserves more than a second blow like that. They all do. And, I’m proud of all of us, and I’m so proud of my kids and family and those who have helped us along the way. Even if it was just offering a good word, a prayer, a positive vibe, a donation, a meal, a hug, a hand… Thank you. I felt compelled to share this with you all, and I love every one of you so much. – mom

 

#KatherineTheBrave

#4PercentIsNotEnough

#DIPGMOnster

#MaxLoveOrg

#PediatricBrainCancer

#StarryNight

#GoGold

#GoGrey

#GreyMatters

#CancerSucks

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Siblings

In a world of school, family, sports, insecurity and growth, some kids have the additional added stress of a siblings cancer diagnosis. And, even more, some of them have the additional added diagnosis of terminal cancer. Cancer’s bad enough, right? Us adults are stronger then we think. We will push through these diagnosis’ for our children. We will think we are going to break, and will be unsure if we can handle it, we will fall apart and pick back up. We do handle it, we will in the end always. But what about our “other” kids. #SuperSiblings or #SiblingsOfCancer often respond with a range of emotions. Some good, and some bad. I would guess that most are scared to death, harbor emotions of guilt and anger, and probably keep their feelings in knowing that the family is a powder keg waiting to blow. Adults have had a much longer lifetime to handle these sorts of stressors, but kids are just learning to handle their own bodies and emotions, let alone handling the news that their sister or brother will die, or could die. So after this horrible diagnosis, they have the additional problem of two parents who can’t do the things they used to do, who can’t focus on them as they once had, who can’t enjoy the time as they once did. These kids are forced to divide up what little time they have with their friends and family, and what little emotional strength they have, and add in a completely new factor to their crazy growing lives. Fundraising, chemo, hospitals, doing things alone, arranging rides here and there, trying to stay normal. Normal. Parents often have no choice but to focus more on the child suffering, then those who are still living and so very alive and dealing with the same pain they are. I know my kids, for that matter, are hiding it well. I’ve called the schools, district, counselors, principles, teachers, coaches, and let them all know that this was going on. I’ve met with most of them as well, in person. They have all been amazing, and helpful. Although, there is only so much they or I can do for our Siblings of Cancer. This is a time when, my kids in particular as teenagers, do not share emotions and tend to keep stuff in, and will not accept the help. I’m fine mom… We’ve all heard it. Well, I’m still hearing it, and I know it can’t possibly be true. It’s a worrisome situation, and I suspect PTSD is a common concern or following factor in relation to these types of situations. Tori’s in her senior year, and Alissa started her nursing career this year, and I’m missing so much of it. It’s heart breaking. It’s something I think of constantly and it rips me apart inside. Every time they need me and I can’t be there, or they say it’s ok mom, or they do anything that I have to miss, something I hadn’t missed before, I feel more sorrow and guilt. More guilt. Well, I wanted to share this with everyone. Reading this essay from Tori made me cry. She cried when she read it to us. She knows we love her, that’s what matters, right? Though, I don’t anticipate the effects of this diagnosis leaving her soul for the rest of her life. We are all eternally changed and affected. And I believe these teenagers that have to deal with these pressures and diagnosis’ of their siblings at such a young age may suffer more than any of us. And then again, it may make them stronger, hopefully… I am sorry #ToriTheBrave and #AlissaTheBrave, I will always be here for you, to comfort you if needed. Love, #MommaTheBrave

#KatherineTheBrave
#DIPGMonster

 

Tori1 Tori2

Ketones

It’s not easy, but Katie is somehow continuing to spill Ketones with every test strip. Just as she has done since week two after diagnosis. Today she successfuly reached “High” ketones! This diet is not easy. It’s caused many tears for all of us. And many tears for poor Ms. #KatherineTheBrave. Tonight brought me back to day 2 after diagnosis, in the door of Katie’s hospital room, David’s arms around me. Dr. Shen and Julene were going through items, things to do, things she would follow up on, and casually she suggested that we reach out to the Max Love Project and Audra. Then she paused and waited. She was probably waiting for us to protest (later I learned that not many parents liked this idea). Our response, “Done, next…” I couldn’t even imagine not doing this. Something that might help her live longer. Give us more time. Hello!? When/How/Who/Where/Why? I’m in! And what makes this more frustraing, is that something like this should not cause tears. Yet it does becuase of the misconceptions and brain washing in society of how a person should eat. It’s like re-training to feed from a bottle to whole foods all over again, without the mess. I am proud of Katie for fighting along with us. She suffers more then anyone in this change in diet. She wants so badly to feel normal, and when she does allow herself to eat a good amount of food, she feels very proud of herself and says things like, “It’s going to make me feel better so I won’t be sick.” We love you Katie Baby, and will keep fighting for you! Thank you mom for all of your hard work trying new things, even when you work for hours on a dish and she says, “Yuck!” LOL! And thank you to all our Keto warriors for your help! 🙂 #GoKatieBaby #DIPGMonster

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Cautiously Stable

***PLEASE SHARE*** Katherine’s tumor is stable. No significant growth. So for now we are still in our honeymoon period. She had .1 centimeter growth in one area and .2 in another, although this is not relevant growth; and, as the Dr. put it, may give us some leverage with the insurance company on the Panobinostat, so we will keep our hope up due to this. Thank goodness. We are done. But are we… What a roller coaster. We didn’t sleep and we are so stressed out. This event has caused so many emotions. We should be happy, yet we are cautious to celebrate. I really want to be happy. I want to cheer, and shout, and jump for joy with all of you. I know you will be happy for us and I love you for that. We need YOU to hold us up, because our happiness will be delayed, so to speak. I want to cry. I want to scream, and yell and hit something. After all of this stress and hearing the wonderful news, all I can do is sit and breathe and wonder about next time. This tumor is evil and it likes to surprise you. It waits until you are comfortable, and living life and then shows up at the party. I am sad for Katie and I am sad for all of the kids that already have and will get different results at some point. Happiness is something we will need to find again. And maybe that is what keeps us fighting, the knowledge that this fight never ends, unless we keep on fighting. It’s never, “You lose, see ya DIPG…” It will always be, “Until next time opponent, until next time.” Thank you to everyone. From the bottom of our hearts. I lean on you more then you will ever know. Thank you to the Wilfords for your Keto expertise, and more time with Katie. Thank you to Tracy for your CBD/THC expertise, and more time with Katie. Thank you to CHOC for recommending and administering Radiation and Avastin so rapidly, and for giving us more time with Katie. Thank you to the Wetzels for connecting us to the Dr’s who have helped us look into additional options for Katie’s big fight coming up, which will also give us more time with Katie. Thank you to the untold amount of people out there that are rooting and fighting for Katie daily, and giving love, support and raising money for her medicine and personal expenses. We can’t thank you enough, you keep us in the present with Katie, and remind us to enjoy her now, as much as possible. You have all given us more time. Time, we are so eternally grateful for. We love you. ‪#‎PleaseShareKatherinesStory‬‪#‎KatherineTheBrave‬ ‪#‎4PercentIsNotEnough‬ ‪#‎DIPGMonster‬

Breast Cancer Monster

Please forgive me friends, but I will not abandon my support for breast cancer awareness month and all of the attention it gets. Especially, just because it gets more attention than my daughters cancer… I am sorry, but I just can’t. Any cancer is bad. I never realized (or fathomed) that there cold be a divide in the cancer community between cancer types, focused on which cancer gets the most support, vs. which that don’t. It was a little disapointing to me. I guess I had to join the club, to see it. We got the short end of the stick in the cancer support area, and I would LOVE to see more support for Katie’s cancer. Any support, actually. And I will fight for that until the end of time, I promised her I would, and I will. Although, I know breast cancer survivors who are at this very moment fighting for Katie, and supporting us through this horrible situation we are going through. Where would we be without them? I know breast cancer victims who have lost their battle to breast cancer, and it was a long hard battle. I know those family members who were left behind, completely traumatized by this horrible type of cancer. This cancer takes our most precious female body part, and uses it against us, to kill us… A part of our body that nurtured their children to life at one moment in time, and then wanted to kill them the next. Watch a breast cancer victim fight, for what seems like ages, and then give up, and then lose their battle to cancer. See if you would think any other way after watching that. I have… I hate all cancer. We never wanted to be the family in this exclusive “cancer” club, but here we are and it’s our turn to try and survive and not give up, as many victims with “any type of cancer” have. I will fight for all cancers, always. Sorry… there is no black and white with cancer, it’s all ‪#‎Grey‬. I love you all, and again please forgive me friends.

Emotional Disassociation

Katie had an unbelievably hard morning. She didn’t make it to school on time, food, meds, tears. I have been crying all day… Well, here and there. Triggers… sitting here wondering what we can change to help her out. Emailing several doctors, from all over the US, and inquiring on meds and options for her next big battle with this disease. Supplements, I have a list 10 supplements long. That conversation with the doctor should be interesting. More tears… Then, her teacher sent me this picture. I am beside myself. She looks so happy. She needed to get to school. I knew it, and her teacher knew it. I wish all kids with cancer had no fear of being at school and being different. I wish they had wonderful teachers like Katie’s. I wish they could be comfortable and given the opportunity to be with their peers, like Katie’s school gives Katie the opportunity to do. Cancer has definitely impacted Katie’s school activities and her fears are through the roof in any situation. People look at her, and ask me, “What happened to that poor child?” “What traumatized her, she’s so upset.” Verbatim… Her anxiety is almost impossible to control sometimes. However, an eye opener this weekend was had, as I was finally given a name for this change in Katie’s personality. “Emotional Disassociation”. An EMT shared this with me this weekend, I’m so glad to have met him. He said he has seen this so many times with cancer and radiation patients that he couldn’t begin to count how many. So we have this diagnosis, and it’s easier to explain now. I might get little cards to pass around to strangers that give me the look when she’s in one of her sad moods. Maybe that’s silly, but I want people to know that you just don’t know the reason for things. You think you know, but you don’t. It could go much deeper than a rotten child who doesn’t want to eat dinner or say hi to a stranger who has empathy for them. As well, it hasn’t completely stopped her from enjoying the little things in life here and there. Such as in this picture. And this is what is going to get me through this day! Thank you to those that understand and that are helping me get through these days. Keep the chant going, “Go Katie GO!!! ‪#‎KatherineTheBrave ‪#‎DIPG ‪#‎DIPGMonster ‪#‎4PercentIsNotEnough ‪#‎PleaseShareKatherinesStory

KatieAtSchool

#KatherineTheBrave

Katherine was diagnosed on my birthday, June 2, 2015, with DIPG (Diffuse Intrinsic Pontine Glioma). It is a tumor in the interior of her brain stem, in the center of her head. It’s unreachable, and its incurable. She is 4 months into the 9 month average survival rate, and this survival rate isn’t that far of a stretch. She has a 1% chance of living beyond 1.5 years. We are hoping that she is the one survivor that helps doctors cure this for all DIPG and Brain Cancer patients. We fight for Katie daily with a tough regimented Keto diet, acupuncture, mushroom supplements, CBD/THC derivatives, herbal and fruit supplements, Avastin (blood vessel growth preventer), and soon we are starting a new form of drug called Panobinostat (a form of Chemo).  Katie’s been through a lot, her spirit is sort of broken, but she fights and she’s tough.  She doesn’t enjoy things like she used to. In fact, she doesn’t like to be out much at all. It makes her nervous and gives her anxiety, which was already a problem for my child since birth. She does MRI, radiation, Port-A-Cath accessing, CT scans, EKGs, with no anesthesia or complaining, and she takes pills unlike most 6 year olds!  Tough is an understatement!  Katie has 3 wishes, one is to not be sick, 2 is for everyone to have a pet to love, and three is: she can’t remember but she knows she has 3. She is smart, beyond belief.  She is 6 and loves to do small, complicated Lego scene kits and 1000 piece puzzles (with help) and is completely bored with the younger age (her age) stuff.  She is beautiful and lovable and has always been referred to as having an “old soul,” as if she’s looking right through you.  She is a perfectionist, as all of her teachers know. She doesn’t understand what is going on with her, so we try to give her as much information as we can, without telling her too much, and we also try to live life to the fullest in between work and other obligations. Nothing is free, and we have to work to pay these medical bills, travel, parking, extra equipment she needs, and most of her meds. Financially that’s hard, and mentally it’s exhausting, but we must fight for her.  All she has is us!

 

We are asking that people share her story and her fight with DIPG! Get the word out, talk about this, get upset, wonder, question this disease . . . so that other parents and kids, when told that they have DIPG and a 9 month survival rate, are not stuck with no hope as we’ve been given, and are not required to look beyond for our own hope. Katie will lose her sight, she will lose her hearing, feeling, body movement, ability to swallow and control her bodily fluids. However, while all of this is happening, she will still think and feel like a 6 year old child. She will be in trapped in a black chasm of nothingness, wondering why, scared to death and unable to sense what’s around her. Her mind won’t die, but her body will, slowly. This is not easy, it’s painful and will take a lot of strength on her part and ours to manage. I ask her daily about her likes and dislikes, almost in an urgent matter, in between other things I blurt out questions, because one day she won’t be able to answer me anymore, and that thought is terrifying. Imagine that, and then imagine the lack of funding. For every dollar donated to cancer research through the NCI (as an example), children’s cancer gets 4%. That’s 4 pennies. And to top it off, the biggest killer of children with disease in the US, even bigger the leukemia, which is Brain Cancer, gets 1%. One penny… And Katie’s cancer, DIPG, the “shortest stick” of cancers for kids, gets even less than that. Ridiculous right… It’s the biggest killer, so how can this be? This not only affects Katherine, it affects hundreds of warriors who are rooting for her, and hoping for a better outcome.  She has sisters, aunts, uncles, cousins, grandparents, and countless friends who are left to wonder why, and hurt along with us.  How can we not have funding for this, to help parents like us. So please spread the word, spread her story, share her ups and downs so others know. We had never even heard of DIPG, until we received the bad news in a hospital one night at 1 AM, and everyone should know about this disease.

 

Please share her story.

 

Thank you for listening to me.

 

Jaime King – #MommaTheBrave

 

You can learn more about Katherine on her Facebook Page, Katherine the Brave.

 

#KatherineTheBrave

#PleaseShareKatherinesStory

#DIPGsGotNothinOnMe

#DIPGMonster

#MommaTheBrave

#TheLifeOfACancerMom

#DIPG

#ShareKatherinesStory

#NEGU

#McKennaClaireFoundation

#MackyShines