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Kady's Greatest Adventure

$21,105 of $25,000 goal

Raised by 225 people in 7 months
Created December 27, 2018
**Updated Cause** Kady got her angel wings at 1:16pm on 7 June, 2019. She is resting with peace, free of the pain and suffering from her broken body. We have peace in knowing that she is no longer fighting. Goodnight for now, my little Kadybug. Her Greatest Adventure has come to an end after being able to fly many family members here to see her and say goodbye before she got her wings. The next chapter will begin by first closing hers with an epic celebration of Kady. It will be something to remember her by for the bright, ray of sunshine that she shined in every place she went. She is going to love seeing everyone celebrate! Next comes the hard part: how to keep her with us no matter where we go. Because we are a military family, we are permanent transients until I retire. We do not have a home to call our own so we have chosen not to bury her. I can't be away from her and since we don't know where we will end up, we have to keep her with us. It scares me to death to think that if she is in an ern, she could be lost, broken, spilled, etc. For this reason, we have chosen to have her asked turned into a diamond. The setting for her will be a permanent, surgically anchored setting in the center of the brain cancer awareness ribbon in the butterfly on my chest. It is the perfect place for me to keep her close to my heart always. Ben and I are also getting commemorative tattoos made from her ashes. The cost will be somewhere around the same as a traditional funeral, around $17,000. That's the plan, thanks for reading ❤ Hello friends! I'm Rachel Baranek (if you don't know me) and I'm going to tell you a small story about my amazing little girl, Miss Kadence (Kady) Baranek. She's only 5 years old but has a story that started like any other American girl but has been given a bit of a twist. She has been able to live in some pretty strange places because her mommy (me) is active duty military. My little Kady is smart, witty, beautiful, and has the kindest heart the world has ever known. She loves her little sister, Laura, the most and tells her that she would do anything for her. She gives Laura anything she has just to see her smile. If Laura hurts or is sad, Kady always tries to kiss and hug her boo-boos away. Up until not long ago, Kady was a bubbly, colorful and energetic little girl just like most 5-year-old little girls. She would run and play and make friends with every kid on the playground. She loved to smile and laugh, be silly, make faces, and just be the beautiful little girl that we have always known her to be. Slowly, things just started to change. Our little girl started to get tired and had trouble with little things like putting her socks on and feeding herself without making a huge mess. Something was wrong. On the 17th of December, our family's lives changed forever and it started when I took a selfie with her to send to my mom. Like most all selfies, I told her to smile big but this time only half of her beautiful little face responded with a smile. She couldn't walk very well and her speech was slurred. Very alarmed and extremely worried, Ben and I rushed our little girl to the ER knowing that something was terribly, terribly wrong. I thought she was having a stroke but I was wrong. It was worse. After a very fast triage-to-treatment whirlwind and a CT of her head, a mass was discovered in an area of her brain stem called the pons. A team of specialists were quickly called in and assembled under emergency recall circumstances and Kady was admitted to the Pediatric ICU (PICU). What my husband, Ben, and I were told next was a parent's worst nightmare: "Unfortunately, I don't have good news for you. Your daughter has a mass in the brainstem called a Diffuse Intrensic Pontine Glioma, or 'DIPG.' It is a very rare condition. Because of the location, we cannot remove the mass and because of the blood-brain barrier, it does not respond to chemotherapy. Basically, there is no cure for what Kadence has and it has never been survived. We can, with your consent, temporarily provide symptom relief and extend her life by a few months by shrinking the mass with radiation therapy but you should know that it will come back in less than a year and does not respond to repeat radiation treatments. I am so very sorry..." Our world crushed and we broke down together, grieving for the future and regretting every little time we had ever put her in time out, yelled because of stupid little situations, or caused her to cry in order to teach her right and wrong. Our baby is here but the future suddenly became a black hole of despair. On the 17th of December, we were told that we will likely have less than a year with our baby girl before she is taken from us forever. It isn't long enough. I want to take it from her and end the suffering before it starts. Multiple tours in Afghanistan as a combat medic and over 15 years of military service didn't prepare me to endure the pain that my heart now feels with every heavy beat. Over the next week and a half (which brings us to now) we mentally broke down and rebuilt our thoughts to turn it into a positive situation. We decided that we need to give her the biggest adventure that we possibly can with the time we have and tour our beautiful country for all its glory. We will continue to fight for, look for, and have hope for a cure and we will continue to look for studies with promising results in which she can participate (as long as she can do so without sacrificing her joy and what health she has). The purpose for this GoFundMe is three-fold: 1. Moving is expensive. We are trying to sell enough of our things, save what money we can, and raise enough money to move to a place closer to her hospital so that our baby has a home to come back to after her treatments at TAMC. 2. We are selling, saving and raising funds to rent truck and travel trailer/fifth wheel or an RV to take Kady on her Grand Adventure across the US. 3. The future is uncertain and could get very expensive with out-of-pocket expenses very quickly. We are moving to a house that is safer for Kady on the days that she doesn't feel like doing much, but we are likely going to have to purchase specialized equipment to keep her safe even in the new ADA-Compliant home. Thank you for reading and thank you for your consideration! Also, if you would like to join our family's efforts to raise money for Kady's Greatest Adventure, please message me at scarecrow0617@yahoo.com or on FB so I can add you to my team :) If you can't donate, it's totally okay. If you can, THANK YOU FROM THE BOTTOM OF OUR HEART! Whether you can or cannot, please share our story with your friends and family. I want the world to know our beautiful little Kady because the world is much brighter with her so she needs to shine all around the country!
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KADY UPDATE: (you may want to sit somewhere quiet to read; it's not good news)
I'm sorry I haven't given an update on Kady's health since the last scan results but it has been a very difficult few weeks for us. Unfortunately, her health has been on a very rapid, very steady decline since just a couple days after the good news from the MRI. In the past 2 weeks, her symptoms have gotten drastically worse and after a trial run of heavy steroids, we now know that they are from disease progression rather than from the treatment in the CED medical trial. She is now under Hospice supervision and care with routine nurse visits at our home. We have oxygen, suction, and nebulizer equipment here at the house ready to be used at any given time.
Kady can no longer speak or walk, and she cannot stand or sit up without help. Kady has actually developed her own hand signals to tell us what she wants and needs! Swallowing is progressively becoming more and more challenging and dangerous as she often chokes while trying to drink liquids. Last night was particularly scary when she actually aspirated water into both of her lungs and immediately experienced labored, difficult breathing. Thankfully, her body bounced back fairly quickly (I sat with her listening to her lungs through my stethoscope until I was certain that they were both clear enough that the danger of aspiration pneumonia was no longer a factor) with the help of some medication that hospice provided this week. Last night during dinner the Hospice social worker brought food and liquid thickeners to help make it less difficult to drink liquids. We will start using them this morning as a routine thing from now on.
As Kady gets more and more tired, we know that she is likely close to the end of her Earthly journey. I HAVE NOT AND WILL NEVER GIVE UP HOPE THAT A MIRACLE WILL HAPPEN TO BRING BACK MY BABY TO HER NORMAL SELF AGAIN UNTIL SHE HAS DRAWN HER LAST BREATH, SHOULD THAT HAPPEN BEFORE THE END OF MY LIFE. We would be stupid to ignore that she may not live to see a cure though. That being said, I need you all to understand that we have stopped seeking additional means for a cure for her. The only way I know how to explain the reasoning behind our decision is that sometimes you get what you wish for regardless of how the wish plays out. My biggest fear at this point (yes, more than my baby being ripped from my life) is that she could get stalemated into a broken body for the rest of her life. Her own body has turned against her to the point that she cannot do ANYTHING by herself. HER MIND IS STILL SHARP AS A TACK. She knows that something bad is happening and I am so incredibly afraid that she will somehow get stuck this way forever. She can't talk. Think about it: if you have ever once met my little chatterbox before this nightmare, you KNOW that every single day she talked from the moment she woke up until the second she fell asleep. This is TORTURE for her too. She is not the smiling little ray of sunshine that we have always known anymore. Now she is often sad because she can't play like she used to, talk like she used to, laugh like she used to.... And to add insult to injury, she is too tired to do the things that she still enjoys (going to the zoo, going to Chuck E. Cheese's, having stories read to her,...). The only activity outside the house that she still likes is going to Target and Walmart lol. (She LOVES shopping! She even made a special sign for Target! She crosses her arms like an X and smiles really big when you say "Target" Haha!) This is her nightmare and she can't wake up from it. She could very well get stuck like this forever if she miraculously achieves remission. Yes, I know that she could also just as likely be cured and return to being her normal self again. But given even the slightest chance of the latter, it's not worth the risk at this point.
As for her Greatest Adventure money from this GFM (GoFundMe), we already the bought and paid for the entir trip. In fact, it was supposed to start yesterday. However, Kady is no longer well enough to safely travel so we had to call and cancel all of the reservations. Instead, we have redirected the funds to fly our families out to see her since she is no longer well enough to visit them in the mainland. Having them here has two-fold reasoning: Tricare has failed to provide us adequate help at home with daily at-home respite/nursing and we REALLY, REALLY, REALLY need help managing even normal daily tasks. So, while everyone is also here to visit Kady for obvious reasons, they are really here to help us take care of Kady and to help watch/entertain & teach Laura because we cannot get her into a preschool anytime soon. There are literally no openings at any of the nearby preschools (I can't even tell you how many Ben checked....). She is on multiple preschool waitlists and ths very soonest date of availability is near the end of August. And even if we COULD get her in, I have no idea how we would be able to sustainably afford it when preschool costs $800-$1600/month here (no, that's not an exaggeration; yes, that's what regular 'ol run-of-the-mill preschools cost here; no, I'm not kidding).
I'm transitioning this GFM from an adventure to helping offset the costs of her memorial/funeral arrangements (more to follow on that) and to help keep Laura in preschool once she finally gets a seat. Since we do not have a forever home ourselves, we have chosen to have her cremated. This way, I can have her ashes turned into a memorial diamond so that we can have her with us always. As you can imagine, it isn't cheap. It costs roughly as much as a traditional funeral so we are trying to prepare for the financial cost now at a time when we can afford the emotional cost of planning it all. Ben and I are also planning to take some of her ashes to a local tattoo shop and have them used in memorial tattoos for each of us. With tattoos, you get what you pay for so I suspect that they will be somewhat costly as well.
So, I guess what I need for everyone to get/understand from this update is 1. Things are very difficult right now for us so please have patience with us as we face the reality of what's likely to come in the very near future. If you message and you dont get a response, it is probably either because we're not exactly mentally in a good spot right now as we watch our little girl slip from us a little more each day, or I simply cannot manage a response for one reason or another (either I read it and intended to respond but got distracted and forgot, or I just couldn't manage a response at that point for emotional reasons); and 2. Plase do not offer suggestions about ways to cure this awful disease. Trust me, I've either read about it and decided it wasn't the right path or I already tried it. Aside from that, if I didn't/don't know about it, I'm not going to do it because of the reasons I already explained, so please don't push it.
If you want to help, there are a few ways you can:
If you want to send Kady and Laura mail, our address is 5068 Macadamia Lane, Honolulu, HI 96818. They love getting cards!
All forms of hope and positivity are always welcome, in whatever capacity you choose to deliver your vision of hope and solace. Hope doesn't cost anything and the mutual benefits are priceless!
Thank you all for reading and for continuing to maintain interest with our little Kady. We love you all! I will try to keep everyone
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Kady's surgery is complete and she is now back at the hotel with is recovering beautifully!!! According to the trial's NP, Dr. Souwiedane is VERY happy with her initial post-op MRI and PET/CT scan, and he said the coverage looked very good!

After what seems like an eternity packed into a few months' time, I have finally allowed myself to take a deep breath, sigh, and relax my shoulders ever so slightly. Our little Kadybug is resting and recovering very well. She played more today than yesterday and even made a trip to Central Park with her daddy. This weekend she gets to be a kid again. This is when she can heal to try and mend what nature so cruelly dealt her, and allow the miracle mixture of science, an amazingly talented doctor, and modern-day medicine to grab hold of that cancerous demon and begin to exorcise it from her body. No, the journey is not over. To be truthful, it may never be. It will always haunt my little girl and it will always lurk in the full extent of my mind's shadows, waiting to jump out to take hold of my hope. Even if this demon has been exorcised in full, it will always be a source of worry for me. But today, well, today is good. Now is good and tomorrow is a blessing. We'll take today and hope for tomorrow every day until tomorrow is gone and all we have is today, regardless of how many decades' days there are or are not. For now, in this moment, I choose peace and hope. Tomorrow looks promising today and I hope that all of the tomorrows are equally as bright through this storm as they are in this moment.
Trust me, the battle is won for today but the war is certainly not over. I hope and pray that the war can be over but we will not know for months to come. Lucky for us, I am REALLY good at war gaming!
Keep the good vibes flowing and don't ever stop! Thank you all so much for the love, happy thoughts, hope, and prayers! :)
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Quick update time!! We are now in NY for Kady's treatment and she is scheduled for surgery on the 7th. We are anxious, nervous, excited and hopeful!
Back in Hawaii, we moved to a new house and it went REALLY well with 15 PEOPLE THAT VOLUNTEERED TO HELP. THANK YOU, THANK YOU, THANK YOU!!!
More to follow!
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TODAY WAS THE LAST DAY OF RADIATION THERAPY FOR KADY!!! She has officially completed 30 rounds and "Steve" (the name she gave her PICC line the day it was placed, though I'm not sure she remembers that lol) has been removed!!! We are so excited to reach this incredible milestone. I'm also excited to announce that we have a tentative date to report to NY for the study!!! We are projected to fly into Brooklyn on the 25th of this month and will be there for roughly 6 weeks. After we have firm dates, I will update again with Kady's Greatest Adventure schedule and location timeline. Hope is life, and life is good today!!
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$21,105 of $25,000 goal

Raised by 225 people in 7 months
Created December 27, 2018
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