Inspirational Stories

Hi, my name is Debbie, and I was diagnosed with acute myeloid leukemia (AML) on February 1, 2021, at age 30. I had been feeling increasingly very sick for several months (weakness, fatigue, exhaustion, bloody noses, bruises that wouldn’t go away, shortness of breath, increased paleness, losing my voice, constriction in my throat which was later found to be swelling in my tonsils and lymph nodes from leukemia), and after several misdiagnoses, I could barely stand up anymore and was having much worse shortness of breath. So, I went to the emergency room at Carle Foundation Hospital on February 1, 2021. A few days earlier, I had bloodwork done which showed the presence of blast cells (a cancer indicator), high white blood cells, low hemoglobin, and low platelets. Unfortunately, I was not told that information, just to follow up in a week. Thankfully, I followed my gut instinct and followed up within a few days, not a whole week, by going to the ER. They found that the blast cells had increased, the white blood cell count had increased, and platelet and hemoglobin levels had worsened, all tell-tale signs of acute leukemia. Carle does not do bone marrow biopsies or treat leukemia, so I was told I would have to be transferred to a different facility. I was taken by ambulance over 125 miles to Rush University Medical Center in Chicago, but Rush did not end up accepting my insurance (I was charged over $102,000 out-of-pocket for a few days of treatment which Rush thankfully ended up covering ― THANK YOU!), so I was transferred after a few days to Northwestern Memorial Hospital which my insurance covered with a pre-authorization.

My lungs were filling with fluid, I was having trouble breathing, and my white blood cell count continued to rise. I was not given a good outlook. They were unable to start chemo for a while because of my lungs were in such bad shape but started me on IV diuretics that got out an average of about seven liters of fluid per day, and I had respiratory therapy teams come in to teach me to use some devices to try to clear my lungs.

However, despite the initial poor outlook, hope arrived because, thankfully, my genetic testing showed that I would be able to have targeted chemo specific to my genetic problem with FLAG-GO (a type of aggressive chemo regimen containing cytarabine, fludarabine, granulocyte colony-stimulating factor, and the targeted drug gemtuzumab ozogamicin). I believe to this day that what saved my life was the fact that I was able to have targeted therapy.

At Rush, I had my first bone marrow biopsy, and through genetic testing, it was found that I had AML core binding factor (CBF) inversion 16 (inversion of the 16th chromosome with CBFB rearrangement 16q22) with KRAS and NRAS abnormal, a type of AML that is aggressive (as all AMLs are aggressive) but is thankfully known as one of the favorable types with often better survival rates and often does not require a transplant.

Throughout 2021, I received seven rounds of inpatient FLAG-GO chemo given over several days per cycle for inpatient hospitalization followed by Neulasta® bone marrow regeneration on body injectors to stimulate new bone marrow growth and one round of IT intrathecal chemo injected into my spine to try to prevent the leukemia from spreading to my brain. The overall treatment successfully put me into full remission, and my last bone marrow biopsy (I had six bone marrow biopsies throughout 2021) was in November 2021 which showed no remaining evidence of disease. I am now in active follow-up care as of August 2023 with labs every one to three months and oncology follow-ups every three months.

I experienced many medical complications throughout my leukemia journey, including two bouts of pulmonary embolisms (blood clots in my lungs), giving myself blood thinner shots for the blood clots, which was touch and go considering I could not give myself blood thinners when my platelets were below 50. I also had swelling in my brain following my IT intrathecal spinal chemo which was treated and reduced by steroids, and I suffered from shingles in November 2021 from my low immune system. I had several hospitalizations beyond the regular, chemo inpatient hospitalizations throughout the year for these complications, as well as for critically low platelets that dropped to 0 a few times, and for low blood pressure, and weakness throughout chemo.

One way that cancer may impact young adults is their fertility, and although there was not enough time to safely plan for any egg retrieval due to choosing my own survival odds and starting chemo as early as possible, I was thankfully able to partake in fertility preservation through Lupron shots. I had red blood cell and platelet transfusions hundreds of times throughout 2021 and got labs around three times a week when not inpatient. Even though I did not require a bone marrow transplant, I have a strong passion for encouraging people to sign up for the Bone Marrow Registry at bethematch.org as your generosity and thoughtfulness can truly save lives and could potentially save mine someday if I ever end up requiring a transplant. I also encourage everyone who qualifies to donate to please donate blood and platelets as there was a frequent shortage of blood and platelet availability during my treatment. It is my understanding that it is a nationwide shortage. Sometimes I would have to wait for hours for bags to arrive from places as far away ss Washington D.C., and the hospitals had to begin a hemoglobin level rule of thumb of who would qualify for transfusions because of the shortage. (Only patients below a certain hemoglobin level would qualify for transfusions, others had to wait). Blood and platelet donations are much appreciated and truly lifesaving for many people!

During the first hospitalization for AML, my mom found out about The Leukemia & Lymphoma Society (LLS). I applied over the phone for multiple financial assistance funds that LLS offers. From my very first interaction with LLS representatives, they have been very professional, helpful, kind, and informative.

LLS grants that I have received have helped reimburse me for health insurance premiums and some prescription medicine co-pays when I was unable to work during my treatment. LLS has also assisted me with travel cards which help pay for gas and hotels, as I frequently traveled back and forth for the over 250-mile round trip to and from Northwestern from Central Illinois.

LLS has also awarded me with Urgent Needs funds that have helped provide $500 to supplement expenses and with a Patient Aid fund for a $100 one-time award to help offset the cost of supplies and other immediate needs when first diagnosed.

I was recently able to attend an LLS event, “Living Well with Blood Cancer,” in Rosemont, Illinois, for a workshop where valuable and encouraging cancer management-related information was provided to all attendees. I also recently had the opportunity to volunteer for LLS at a Cancer Survivor Summit in Champaign, Illinois. I hope to attend the LLS Light The Night (LTN) event in the future which I’ve heard is an amazing and touching event.

I would like to give back to LLS as it gives so much to me, which is part of why I decided to apply to be a volunteer for LLS. I am looking forward to hopefully having a chance to thank some donors personally at events throughout the cancer survivor and research community. I have also applied to be a Patti Robinson Kaufmann First Connection volunteer for LLS, volunteering to talk one-on-one with fellow survivors and give peer support as I truly do know what it’s like to experience a blood cancer firsthand. I have endless stories that I believe can help others as I share about learning to be my own health advocate and how to navigate the various health systems such as applying for SSDI, managing health insurance prior authorizations, confirming coverage for procedures, etc. I did many of these from phone calls I made while lying in a hospital bed (my smartphone was the tool that allowed me to keep some control and autonomy when I felt like most other control had been taken from me). Most of this was done over 125 miles from home with no income coming in, depleting monetary savings, including being unable to continue to pay rent, renew my lease, and having to navigate moving all my belongings out into storage and being essentially “homeless” for the first time in my life, all with no direct caretaker and barely being able to stand up from fatigue. It has been a difficult journey, and I still face daily challenges such as CRF (cancer-related fatigue) and the monetary impacts of debt from 2021, but I am trying to continue to recover one day at a time and am extremely grateful for the second chance that I have been given to live when I did not think I was going to survive. It is very frightening to feel yourself having trouble breathing and to put yourself in the hands of the doctors, nurses, and pharmacists in a cancer care unit. But donations do make a direct impact because LLS uses donations to help the cancer process in so many ways so that those doctors, nurses, pharmacists, and so many more entities can have the best chance at saving lives. I hope to be a source of encouragement and inspiration for many to never give up.

I try to be an open ear to anyone, and I love to share my story. No story’s going to shock me or make me turn someone away. And after going through cancer, there is one major lesson that stands out ― we are all human, and we all deserve respect. Cancer does not discriminate, and sadly there are so many people affected. But beauty and light can come out of the darkest of places. I hope and pray every day for a cure for cancer. Although research has come a long way, we have a long way to go, and donations are very much appreciated by the people going through it firsthand. For us, even if we survive, there is always an “us before diagnosis” and an “us after diagnosis.” From that moment of diagnosis onward, we are forever changed. Personally, I am much more cognizant of decisions I make now, and for the first time in my life, I literally count my blessings one by one like all the things I never knew if I would ever be able to do again ―roll over in bed, sit up in bed, stand up, walk, shower myself, go to the bathroom myself, and have the strength or the breath to talk anymore. But thankfully, my targeted chemo saved my life, and now I see everything through a whole new lens. Although I’ve always been a compassionate person who majored in psychology and sociology in college with the intent to help people in difficult circumstances, I now try even harder to be nonjudgmental, understanding, and empathic because we truly do not know what another person is going through. And sometimes it can make a world of difference to be an open ear to someone.

The donors and LLS have been a beacon of light, hope, and direct assistance to me for over two years now, and it is a great comfort to know that I can turn to LLS to help me as I continue active follow-up care and monitoring as I navigate cancer survivorship. Thank you so much for your kindness and generosity!