Allie's Pediatric Bone Cancer Fund
$69,050 of $100,000 goal
Around October of 2014, I began to feel severe pain in my hip, excruciating enough that I was wheelchair-bound and unable to walk. The next few weeks were swamped with numerous doctors’ appointments all over the state, consulting via Skype with doctors in Europe, and undergoing constant tests from which I discovered there was a tumor in my pelvis. By December 2014, I was officially diagnosed with Ewing's Sarcoma, a rare childhood bone cancer that yielded me less than a 50% chance of surviving 5 years with conventional therapy.
To make a very long story short, my family and I endured initial panic followed by months of stress, endless research, and sleepless nights, all amidst agonizing pain episodes and countless cancer treatments and their side effects. My odds were not at all favorable, and as a result we explored and researched both conventional and experimental treatment options all around the world.
Until this past fall, very few people knew I had been battling cancer as I still had all of my hair and was for the most part looking healthier than ever. Unfortunately, my cancer metastasized in July (progressing to Stage IV) and they found tumors throughout my pelvis, legs and spine. Some of my vertebrae were fractured and I had no choice but stay bed-ridden in the hospital as I could not walk or move much at all and was in an immeasurable amount of pain. From there I started the rough journey through several rounds of high dose chemo and all of its difficult side effects, and am on the path to super high dose chemo (30x the strength of the high dose) followed by a stem cell transplant rescue. Basically they poison and kill all my bone marrow bringing me to the edge and then rescue me with my own stem cells they already harvested from me (twice). It is very frightening and risky but seems to be one of the best solutions at this point either for a cure or to buy more time well into the future.
Will this be the cure?...the outcomes are mixed across the board. Some have been cured, some have relapsed, some it extended their time on earth and some have passed on...Bless all of them. But most of the effective immunotherapy and less damaging treatments are in trial phases and require the patient to fail all the chemo and conventional treatments before they let me try them. Others may be available in other countries but that is also very expensive. Bottom line is that I have a rare pediatric cancer and it is not a priority for the cancer industry to find a cure since the market is small and less profitable.
As of February 2016, I am heading into my 8th round of high dose chemotherapy which is helping but starting to have some serious side effects on my body.
This has been the hardest year of my life, but I can’t even truly put into words my desire to beat this. You see, my goal is not to be a cancer survivor. I want to be a victor, a conqueror. Surviving is not enough––I want to LIVE, I want to THRIVE.
I take an interesting perspective on this hardship; in fact, I've asked myself "What if cancer is the cure?" This is because my whole life has changed since being diagnosed. As ironic as it seems, in many ways I am healthier now than I've ever been. Even as a teenager, I've learned to make health and nutrition a top priority, I've learned to forgive and to find emotional balance, and I've learned not to take things, people, or circumstances for granted and to go after opportunities that I truly want, because they will not always be there. I've met so many different people––doctors, patients, survivors––and I've heard their stories and seen how they can have such a significant effect on someone else's life, which in turn has inspired me to be that for others. I don't know if I would have necessarily found this drive if it weren't for this experience.
However, as you can imagine, all of this is very expensive. We are exhausting all possible resources to find the best treatments possible, and I refuse to leave any stone unturned. We have sent biopsies of my tumors to grow on mice in an attempt to try different therapies. We have found several supportive therapies to try to overcome the cancer long term and help with the side effects of chemo. Unfortunately these are not covered by any insurance and our out of pocket expenses are huge.
Any support you can offer is very much appreciated. Five dollars, a hundred dollars––it all makes a difference and helps me out a lot. If you can’t afford it, please do not donate. Your prayers, thoughts, and good vibes are all just as important and they mean so much to me. So many people have helped my family and I out in so many different ways and I can’t express how special, loved and supported you all have made me (us) feel.
Please give if you can. Please pray no matter your faith. Be positive and tell all those close to you that you love them and appreciate them. From the bottom of my heart please accept my love and gratitude. Thank you so much for your support, I can’t wait to get back out there in the world and make a difference.
I just want to thank you again for all the generous donations and support you have given me throughout this battle. It really has helped more than you can imagine.
Unfortunately, I now have an update on the status of my health that is a bit discouraging. Despite finishing my treatments at City of Hope (9 cycles of high dose chemo followed by super high dose chemo and a bone marrow transplant) as well as 30 proton beam radiation treatments down at Scripps in San Diego, the fight continues. I had clear scans for a few months following my radiation, however persistent painful headaches over the next few months caused me to go into the emergency center at our hospital this past month. To keep it simple, an MRI of my head revealed another tumor (still Ewing's sarcoma) had made its way into my skull. It's located in the mastoid behind my right ear and had been pressing against the dura that protects my brain, causing an immeasurable amount of pain. Thankfully at this point we have a pain management plan in place as well as a tentative treatment plan that follows: radiation to that area, followed by 6 rounds of intense chemo. Due to this news, we had to cancel our scheduled Make-a-Wish trip to Hawaii that was planned for January, as well as obviously re-evaluating our whole plan moving forward.
Friends, family, supporters... my attitude remains the same; I am more determined than ever to beat this and not only destroy the beast, but take my life back so I can THRIVE. I have so many plans, dreams and aspirations for the near and far out future (including university, traveling the world, and having a family amongst others) that I am not ready to abandon. I will continue to fight like hell, and I know my precious family will be there right alongside me.
However, this does mean we continue to incur costs of all treatments and all the other stuff that adds up more quickly than one can imagine. We are continuing to do our own research and treatments alongside conventional therapy because we firmly believe in leaving no stone unturned in this battle. That being said, these costs add up, from things as simple as food and gas money, to large treatment possibilities and trials that aren't necessarily covered by insurance. So everyone, as much as I wish I didn't have to, I am again reaching out to you for help. If you have money to spare, even just $5 here or $20 there, it all makes such a huge difference in the long run. I can't tell you how much having these previous donations has already helped my family and I deal with the immense financial burden that comes with fighting a—very annoyingly persistent— life threatening disease.
Again, please do not donate if you cannot afford it. I am not asking for you to bend over backward financially on my behalf, but if you do have that spare change, your donation would mean more than you could ever know. Donating blood to City of Hope in my name is also a great way of helping out. (You can message me for more details regarding that specifically). Your ongoing prayers, good vibes and constant words of support are also such a blessing, and once again I can't properly express how eternally grateful I am for you all and what you have done for my family and me.
I WILL BEAT THIS. I can feel it in my veins.
Thanks again for all your support, and I hope one day this page will be updated with my cancer free status and maybe a couple pictures of me thriving where I belong.
Continue to spread love and be a positive influence for those around you, it has more of an impact than you might think.
Much love always,
My brother had bone narrow transplant it seemed to be working for a few months then he relapsed got worded and left earth.. I always have you in my prayers may god do magic in you and heal you.. I know how hard it is all the pain the chemos the pills everything.. I'm glad you haven't given up yet or like my brother use to say do I have an option? Take care and keep going stronger than ever!! I hope you get to continue putting updates I would love to be up to date of your process Much love and respect ❤️
Hey Allie! I'm Shio and I am apart of Love Your Melon and we would LOVE to write you some warm, loving cards to you if that is okay. Please contact me, I just followed you on Twitter. You will be in my prayers and I will tell my crew to have you under there prayers too!
Hi Allie. You are an inspiration to everyone who have had a chance to know your story. I'm glad to send donation, positive energy, and prayers to you & your family. Thanks for sharing your story. You're already making a difference. Fight on & continue to inspire sweetie!!
You are such and inspiring young lady! I love your courageous and positive attitude...I am happy to contribute for your battle! Keep sending out that positive energy. I will do the same for you.
Hi Allie, you are a fierce warrior princess! I will be honored to provide financial and prayer support for your full return to health! Let me also recommend you connect with Make a Wish OC/IE http://ocie.wish.org/ . This is an awesome organization. I have seen many "wish kids" get so much joy and strength for the journey from their wish. Here is their mission statement. "We grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy". Check out their website, tell them about the wish from your heart, let them help. Keep the faith girl, stay strong!
Allie deserves all the help we could give. Thank you for helping.