Allie's Pediatric Bone Cancer Fund
Donation protected
I need your help please, because I want to be victorious over this difficult journey I've had to endure. I want to thrive and will do anything and everything I can to survive and overcome this cancer so I can make a difference in the world.
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.
Love always,
Allie Oetken
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.
Love always,
Allie Oetken
Organizer
Allie Oetken
Organizer
Tustin, CA
