Kristi

Active LifeList Participant

I started having pain and numbness in my right foot in 2011. For five years I tried to get answers, even seeing a neurologist. I was repeatedly told I had low B12 and he thought that was it. I gave up after going to him and getting the same answer every time because I couldn’t afford to keep going with no solution. In 2015, I noticed a lump growing on the inside of my foot. I went to my primary care physician who referred me to a podiatrist. He did an x-ray and said the lump looked like a lipoma but ordered an MRI to be sure. The MRI came back and he said it still looked like a benign lipoma and referred me to pain management. After going there for months and nothing helping, I decided to have tarsal tunnel release surgery. My surgeon also removed the “lipoma” and sent it to pathology. That Friday we got a call that it was cancer, epithelioid sarcoma. I had to go have another MRI to see if the cancer was still in my foot or he had gotten it all. It was spread throughout my foot but only in my foot. I opted for amputation after being told it was my best chance of survival because my type of cancer doesn’t respond well typically to chemo or radiation. My amputation of my right leg below the knee was on April 22nd, 2016. I was cancer free for almost seven years afterward. 

On February 22nd, 2022, I went to the ER with extreme pain in my left ribs and found out the cancer was back.The spots on my lungs are slowly growing but considered stable for the time being. I am on daily chemo pills and am monitored every three months. I am also on pain management medications because I deal with a ton of chronic pain from everything I’ve been through.

Kristi’s LifeList:

  1. Go to the Wizarding World of Harry Potter

Kyle

Active LifeList Participant

I was diagnosed with localized Ewing sarcoma at the age of 25 in March of 2018, with the tumor located on my right foot. I went through the standard chemotherapy protocol and received fractionated radiation to my foot. I had no evidence of disease for the next three years. In June of 2022, a routine scan showed a large tumor and a smaller secondary one in my right lung. At this time, I was diagnosed with metastatic disease and did eight cycles of chemotherapy followed by surgery to remove the tumors. In August of 2023, several nodules appeared again in the right lung. I received radiation for two of the nodules and enrolled in a Phase 1 clinical trial in September for relapsed pediatric sarcomas and have completed three cycles up to the present date. I recently completed low-dose whole lung radiation and focalized high-dose radiation to the visible nodules.

Kyle’s LifeList:

  1. Wilderness First Responder course

  2. Backpacking equipment

Maliek

Active LifeList Participant

I was diagnosed with cancer in my last semester of college. I was 22 years old in June of 2021 when I received the news, and that was the beginning of a long journey that continues to this day. My first line treatment lasted nine months and consisted of chemotherapy and radiation. After my treatment, I went back to school to complete my degree in children’s mental health and began work at a local non-profit helping children and young adults struggling with Schizophrenia spectrum disorders. 

A year and a half into remission, I was given the devastating news that my cancer had returned. I began a second line of treatment which consisted of chemotherapy and the amputation of my left leg. I am very blessed that upon second diagnosis the cancer was still localized making amputation a viable option for a cure. I am trying my best to acclimate to my new life.

Maliek‘s LifeList:

  1. Macbook Air

  2. New violin bow

Michelle

Active LifeList Participant

A day after my 28th birthday I got an ultrasound of a lump I found on my breast in November of 2022. After the ultrasound they told me I needed a biopsy, but I’d have to wait more than three weeks for one. These three weeks felt like the longest of my life. On December 29th of 2022,  I got the biopsy, and on January 3rd of 2023 I got a call that I had cancer. Before getting diagnosed, I was planning on finishing my schooling to become an RN, get married to my fiance and start a family. Since January of 2023, I have had to decline my offer into the LPN-RN program, and say goodbye to this plan (at least for now). I also found out I have a BRCA 1 mutation, and that my cancer spread to one lymph node. I have gone through six rounds of chemo, three surgeries including a double mastectomy, 25 rounds of radiation, estrogen suppression therapy, endocrine therapy, and am now doing targeted chemo. I will need to do 14 rounds before doing any more reconstruction/surgeries and am currently disfigured as I have one flat side and one side with an expander.

Before cancer, I worked as a newly licensed nurse for about a year until I was unable to work to do side effects of chemotherapy and surgery. Since I am a nurse, I did not feel comfortable working with “chemo brain” as well as the rest of the side effects that I have endured. Since starting my new chemo, I have had minimal side effects but am still at a higher risk of getting sick while working, and get tired very easily. Because of this, I only work when I feel up to it, and if my work allows, which has been minimal hours. I am hoping by the end of 2024 I can truly start taking my life back.

Michelle’s LifeList:

  1. A trip to visit her 92 year old grandma in Canada

Nikkole

Active LifeList Participant

My name is Nikkole and I am 25 years old. In July of 2022, I started having leg pain, but I didn’t seek professional help until an incident in September that made me realize this was not normal leg pain. I had an x-ray but they didn’t find anything and I was put to PT before I could get an MRI. The MRI only found a small herniated disc that was normal for my age and job position, but unfortunately the doctors refused to look past this and look for another diagnosis. In March I visited another doctor that did a multitude of blood tests that returned some alarming results. Unfortunately this doctor had a  heavy caseload and did not follow-up or advise properly. Out of desperation, I found an orthopedic surgeon who would not do further testing and diagnosed me with sciatica. I received an epidural in my spine that only took effect for a day, but the pain had returned. After losing my ability to walk at the end of April, I tried to see several specialty doctors whose schedules were too busy to accommodate me. So on May 31st my mother took me to the emergency room where we pleaded for them to help, at first they did not focus on trying to help with my pain but other symptoms I’ve been dealing with, after that examination we pleaded that they help with the pain and showed them the swollen lymph nodes; which finally got their attention. 

The hospital did a biopsy on my Lymph Nodes and found I had Non-Hodgkin’s Diffuse Large B Cell Lymphoma. From June to October I was a part of the Car T Cell Trial, where I was a placebo patient receiving regular treatment of Chemotherapy. After receiving 6 rounds of Chemotherapy I became better and was able to walk. But two weeks after the completion of my chemo my lymphoma returned, and it came back more aggressive than ever. By the week before Thanksgiving I lost the ability to walk and was in insufferable pain 24/7. The doctors rushed me onto this new trial of Car-T  (where I will be receiving the cells this time), and the Friday before Christmas I was hospitalized for my new treatment. My stay is expected to be 3-8 weeks long, and my recovery should be an additional two months.

Nikkole’s LifeList:

  1. Still deciding

Peter

Active LifeList Participant

I was diagnosed with Hodgkin’s lymphoma in March of 2021 at the age of 32. I initially opted to try an alternative cancer treatment center in Arizona. It was a mix of therapies combined with chemotherapy. After I finished there I was referred to a local doctor who continued my treatment. Initially it looked like the treatment had worked but after getting a PET scan, we knew the lymphoma had come back. It was at that point I decided to go the traditional route since all of the alternative cancer treatments I had done previously had not been covered by my insurance. I started seeing a new doctor and began new treatments. My initial PET scan was great and showed no cancer, but my next PET scan in 2023 showed that the lymphoma had returned. I was then referred to my current doctor for a stem cell transplant. I was then admitted into the hospital on December 7th for the transplant and discharged on December 26th. Currently I am recovering from the effects of my transplant.

Peter’s LifeList:

  1. Wuhan Koi Cymbals
  2. Roland SPD-SX Pro Sampling Pad
  3. Toca Kickboxx Suitcase Drum Set

Quincee

Active LifeList Participant

My name is Quincee, I am an almost 31 year old mother of two little girls. Back in 2021, when I was just shy of seven months pregnant, I was diagnosed with leukemia after a hematologist noticed that my blood counts were extremely low and looked off. I did a round of chemo while pregnant, had my youngest daughter, then did another two rounds of chemotherapy. I finished up my then cancer journey with another round of chemo, eight rounds of total body radiation and a successful stem cell transplant from a cord blood donor. 

I was able to have two cancer free years and took that time to restart my bridal hair and makeup business and go to cosmetology school to get my cosmetology license. When I had around 200 hours left in my program it was discovered that the cancer was beginning to come back in July of 2023. I managed to finish cosmetology school in between two more rounds of chemo and am hoping to get my cosmetology license after my next stem cell transplant.

Quincee’s LifeList:

  1. Tickets to see Usher

  2. Family trip to Legoland

Sarah

Active LifeList Participant

In June of 2023, I was 22 years old and I came back to Ohio after living in Italy for seven months with my boyfriend. I was only back to complete some documents and then return in September. At the end of that month, I fell down the stairs and functionally broke my fall with my head. I ended up going to the ER to see if my brain was swelling and while my brain was fine, in a CT scan to see if I broke any neck bones, they found severe lymphadenopathy. I walked into the ER that day thinking I might have a concussion and left being told, “You could have leukemia, lymphoma, a severe infection or an inflammatory disease. In any case you need to call these offices at 8am sharp and schedule your ASAP appointments.” 

This scan led to many others, blood work that shocked everyone but the oncologists, two biopsies, a serious infection and complications from my whole lymph node biopsy, ovarian tissue freezing, and dozens of appointments. I spent all of my free time learning about different lymphomas and chemo regimens, trying to prepare myself for what might come. On July 23rd around 6pm, my primary care doctor called me and I heard that it’s bad news. I cry, “Is it Hodgkin or Non-Hodgkin?!” He says, “It’s Hodgkin.” And I wept and celebrated and danced and sang because that meant I am gonna live.

Sarah’s LifeList:

  1. Meet Rhett and Link

  2. Visit Mythical Kitchen

Sharon

Active LifeList Participant

Life has an incredible way of taking us through unexpected twists and turns. My name is Sharon, and my journey has been a testament to the strength that resides within us when faced with challenges we never saw coming. It all began on a seemingly routine day in October of 2021, when a medical procedure was meant to be the focus. Little did I know that this would mark the beginning of a battle against a rare form of cancer. I was 26 years old at the time, a proud mother of two precious children, wife to my amazing husband, and the eldest of eight siblings. Life was busy, but my family was my rock. But life had other plans for me. The procedure took an unexpected turn, and I woke up on a ventilator in the ICU. I thought that was the scariest moment of my life until more challenges emerged. Chronic pain left me unable to walk, play with my young son, or even hold my newborn daughter. Countless hospital visits followed, and it was then that I met a doctor who uttered words that shook me to my core: “Not all the results are back, but some suggest you have lymphoma cancer.” The diagnosis was a rare and aggressive form of Non-Hodgkin’s

Lymphoma. My journey through six rounds of chemotherapy was marked by both physical and emotional hurdles. Yet, I emerged in remission, a fighter who refused to let cancer define me. A year passed, but then came the news I dreaded – a relapse. Once again, I faced this battle head-on, with a new plan and the hope of a bone marrow transplant in hopes of curing this ugly disease.

Sharon’s LifeList:

  1. Trip to a cabin in Maine with her family

Shelby

Active LifeList Participant

In March of 2023, I began having symptoms of nausea, tiredness, and unsteadiness. I even started missing many days of my senior year of high school because I couldn’t function. On Saturday, April 1st, I was on my way to go prom dress shopping, and I collapsed and could not walk. I went to the ER and started puking over and over. The ER had me take a pregnancy test and it came back positive, even though I had never had sex before. I expressed this over and over again, but the hospital claimed I was pregnant and needed to go home and prepare for my baby. Over the next four days, my symptoms became debilitating. After not being able to walk (or hardly talk) over the next five days, I visited three more ER’s, each time being denied care because they said I was “pregnant.” Finally, on April 7th, my mom lost her mind and demanded that more testing be done. At that time, a CT scan of my head was done and it was discovered that I had more than five brain tumors. I was immediately transferred to the Neuro ICU and underwent emergency brain surgery to save my life. 

After the surgery, I was added to the “brain board” of the midwest – which is the best and brightest neuro doctors/surgeons/oncologists/etc in the midwest. On April 12th, I had another brain surgery before I was transferred to Children’s Mercy Hospital and began chemotherapy. I have had six rounds of chemotherapy treatment, a bone marrow transplant, and I am currently undergoing proton radiation. I have not yet recovered from the bone marrow transplant as my doctors hoped, so I might have another bone marrow transplant after my radiation is complete.

Shelby’s LifeList:

  1. VIP Trip to Universal Studios in Florida