“I miss Hawaii.” “You miss Hawaii, why?” “I don’t know. I just miss Hawaii…”
Katie’s tumor is causing havoc as it slowly grows and puts pressure on the areas of the brain close to the PONS. We were pulled out of the room, given the same look we remember so well, and were asked what we wanted to do. These symptoms we are seeing are expected, and will get worse. They could get better too, but not with our efforts, and only at the grace of the tumor and her body’s effort to fight it. They asked if we wanted to move forward with some possible tests and neurological exams, which come with possible negative factors and complications, just to see if there is a small iota of something that can be done to give her more time. Did we want to keep her in the hospital, risking our wish to have her final days be at home. We could up the dose of this drug, change to that one, remove another one. All with no promises that any of it will give her more time, and definitely with no option of survival when looking at the big picture. And quality of life, well that will be gone… So, we continue to stand by our decision, that we do not want our precious child to be put through any of that. No… We want her to be at peace. No more suffering. No more pain. If anyone thinks that this was easy, and/or that we are quitting, please don’t share that thought with us, because neither is true. Trust us, and trust that the other #DIPG parents who come to this conclusion, did not come by it easily, or selfishly. Making a decision to let your child die is the most awful thing we will ever do. We will never, ever, be the same. We are devoid and empty inside. As of now, we are taking her off of the phenobarbital and increasing the Ativan to keep her stable, and hopefully happy. On or off the anxiety medicine, she is not herself anymore, so we will not drag her through the motions for our own benefit. She is not in pain, thanks to her oils. If any indication of pain begins, we will start pain meds. Being at peace may give her more time, more quality time. We are heart broken and just need time to process this. We are hoping that she makes a turn for the better, and we can enjoy her for much, much longer. We will update in the next few days. Please keep Ms. #KatherineTheBrave in your thoughts and hope for a turn for the better along with us. We appreciate it. Thank you…
**UPDATE*** The Ice Cream is all gone! LOL!
Katie could not lift her arms or legs all day. She slept from 8 AM until 5 PM, after sleeping all night. We went on a walk, did work around the house, I worked, and still, nothing, just out. We dosed her with 200 MGs of Phenobarbital today to try and help with the seizures, so this may be why… Or the tumor is acting up again. Although, when I mentioned the word sherbet ice cream, she arose… and was able to hold the spoon with some effort. Ya! Success!!!
!!!DIPG families have nightmares while awake!!!
The correlation: She’s doing anything, in this case eating, then some mild coughing starts, gagging, and the eye rolls up. It’s a routine we are familiar with. We freak out, and wait. She’s upset, and scared. We watch for it to return to normal. Our night is ruined. When usually this “eye thing” would come back down after a few seconds, this time it lasted for minutes. Several. Possibly 10. Scary is an understatement. Why do we have to do this? Watch our child die, slowly. Her brain slowly squished outward into her skull as this barrage of mini tumors grows, and grows, eventually taking away my daughters sight, hearing, mobility, speech, self worth and humanity. I’m pissed. I’m tired of watching this. I’m tired of not being able to do anything other than give her more steroids and hope it helps. I’m angry that the families I talk to daily have to watch, or have watched, the same thing to its finality. Each child’s story eats at me. Those awful choices we/they have had to make, every damn day. The decisions to push on, or to just let go. Yes, families of children with no chance of survival make these kinds of choices during breakfast, on the 57 freeway, at Target. To dose or not to dose. To keep them here longer, or give them quality of life. What is quality, really? Weighing our child’s life in our hands. This is not ok. Rare… San Diego, Placentia, Huntington Beach, Irvine, Santa Ana x2, LA x3. That’s 9 kids in Southern California (alone) in less than 5 years. Those are the ones I am aware of. Rare??? No. Not rare. That’s a cluster. That’s something we are breathing or eating. Something in the air or water. No my friends, not rare at all. Common, and everyone should be worried. Who’s next… I want a damn cure, and I want it now. I’m tired of doing all the right things, and calling all the right places, speaking to all the right doctors, following all the right advice, and pushing all the right buttons ,and getting nothing in return for my child’s suffering. I want to run to an island with her and hide. Away from all of these pokes, and prods, and painful memories. I’ll be 40 this year. On June 2nd. She was diagnosed last year on June 2nd. My 39th birthday. It. Will. Never. Be. The. Same. My birthday is dead to me. That can be the first thing to go. Take it. I won’t be needing it anymore. (silent scream)
Off she went today. Part two of a four part high school program that every teenager must go through. I’ve always been a sentimental mom internally. I hide it well, but it’s there. However, since my world fell apart on June 2nd, it’s escalated to full blown anxiety mode. When they leave now I worry tremendously, and I sleep less. What was a mom’s worry, has turned into something more, almost a phobia. I’ve sat back and thought, a second disaster would be the perfect storm right now. It would top the cake of this insane situation, which no one deserves. One kid with terminal cancer, one kid gets hit by a car or worse, one husband disappears… or worse! Yes, harsh, but that’s how I’m left to think after everything. So my mind moves like this, consistently, every day, every minute. I’m not the same friend, daughter, wife, mom that I used to be. I’ve changed, and it’s only going to get worse. My brain is a never ending swirl of insane fears and conjured up emotions of which I have no idea where they’ve evolved from, or do I? We all have fears, as parents, and spouses, and children. However, I feel them more absolutely now than I ever had previously. At any moment I know that anything, even those things I feel we all deserve wholeheartedly, can be ripped from my hands and no one, no matter how hard they try, no matter how much knowledge they have in this area, can give that back to me. I know this now… It makes me freeze in place sometimes. I stop, and think, and shake my head and move on. As if shaking my head will make it go away. We think we know sorrow, or suffering, but when your child gets that diagnosis, you really “know” it. I’ve been through a lot in life, those close to me know this, but I’ve never had this. In my mind right now it’s all about what’s next, when is the next disaster. PTSD, possibly… I’m pretty sure it’s there… deep down. I vaguely remember the week before Katie’s diagnosis. I scarcely remember June. Snippets, all revolving around poor Katie, doctors, heads and hands, lots of tears, needles, gifts, and hugs. I don’t think it’s actually hit me yet, sadly. Here my child is diagnosed with the worst brain cancer she could possibly get, everyone is on overdrive and I can’t think, or remember anything. I just sit here, trying my best to be polite, give timely responses, give thanks, be there for everyone and remember anything and any of it… And I write, I write to remember, and I someday hope to stop preparing for the next disaster. – mom
Come join us or just donate! Let’s fight this disease!!! The McKenna Claire Foundation funds many DIPG trials, one of which is hopeful for Katie out of Stanford. I will be manning this stand at my husbands company this Saturday from 10 am to 1 pm. Hope to see you there!!! (please share if you can)
Yesterday I took Katie to a CBD doctor. I went into that appointment feeling pretty disheartened. It was yet again another appointment where I was walking in and wondering why I was doing this in the first place. Was I blowing money away for the simple fact that it might make me feel better, so that I could have that feeling that I was fighting for my daughter’s life. “I’m not giving up! Look at me everyone! I’m here trying again, to help her survive it. Please don’t give up on supporting me! I haven’t given up hope…” Hope, something I lost on week one when her Dr. said her average life expectancy rate was 9 months. Continue reading 9 Months