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Fight for Cure is an endurance event aimed at raising money for CURE. So many children all around us have endured the reality of cancer at a young age. We are fighting for them!

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This year we are fighting for Amelia! Here is her story:

Thursday, May 7, 2020 started out like any other day during quarantine. It wasn’t until two year old Amelia woke up from her nap around 4:30 that afternoon that we noticed a new concerning issue - Amelia was breathing fast. The doctor’s office was closing, her coloring was fine, and she was acting like she felt ok, so we decided to wait until the next morning to schedule an appointment for what we thought might be bronchitis or something else easily diagnosed and treated. We had no way of knowing how wrong we were.

On Friday morning, we headed to Scottish Rite’s emergency room based on the doctor’s office’s recommendation since they didn’t have any appointments available. Due to COVID protocols, only one adult was allowed to be with Amelia, and Mom volunteered to go. At first, the doctors thought Amelia had swallowed something. After x-rays, they thought Amelia’s heart was enlarged. After the cardiac team did some imaging of their own, it was determined Amelia’s heart was fine but was dislocated down into the bottom right of her chest. The next set of images showed masses - one from shoulder to shoulder and halfway down her chest, pressing on her lungs. (We were later told that this was the largest mass they had ever seen in a child her age/size). Another large mass was located in her pelvis, and many others were located throughout her torso. Her kidneys were very enlarged and in danger of shutting down. In short, Amelia was quickly dying. She and Mom were immediately moved to the ICU, where a call was sent out to doctors all across the city that she needed help. Doctors that were driving home turned around and came to help save Amelia. Because the mass was constricting her air flow, Amelia could not be sedated for any of the testing (spinal tap, etc.) and was instead given medication to help her to relax and forget. Doctors said “we have to try to save her life now, and we’ll worry about the mental and emotional ramifications later.” We are blessed that God heard our prayers and the doctors were able to save her life, and now she is able to get help for that trauma.

Further testing revealed that Amelia had a rare form of cancer called T-Cell Acute Lymphoblastic Leukemia/Lymphoma. Amelia could not be sedated for a bone marrow aspiration, which is how doctors test to decide if it’s leukemia or lymphoma. We will never know which she had, but fortunately treatment is the same for each. Amelia spent a few days in the ICU while she started steroids to shrink the masses and chemo to kill the cancer. Once the chest mass shrank enough to no longer affect her breathing, she was transferred to the AFLAC floor where oncology and hematology patients are treated. No visitors were allowed, which left Dad and big sister Naomi at home waiting for updates via FaceTime and text messages.The playroom was closed, and patients weren’t allowed to be together. It was a very lonely and isolating experience. During that time, Amelia had high dose steroids daily and received chemo treatments. She gained about 11 pounds, which was over ⅓ of her starting body weight due to fluid retention caused by steroids. She lost her ability to walk, started losing her hair, and stopped smiling. She started to vomit and refused to eat. She was swollen, miserable, and missed her family. She was in the hospital for a total of 29 days before she finally got to go home.

As treatment progressed, Amelia had many side effects from the chemo - lost her hair completely multiple times, had incredibly painful kidney stones, lost too much weight due to nausea, began having consistent, frequent, and extremely low blood sugar, had neuropathy and required physical therapy to regain balance and strength and feeling in her hands and feet, lost a lot of her short term memory to “chemo brain”, and just felt terrible. At 2 and 3 years old, Amelia also learned a lot from treatment. She learned how to take pills so she didn’t have to take the nasty-tasting liquid medicines. She learned how to use the barf bags and to keep one on her all the time so we didn’t have to clean up so much. She learned how to be still so she didn’t get the lines tangled during treatments. She learned how to push the IV pole around so she wasn’t stuck in the chair or bed. We lost track of how many times she was admitted to the hospital. It was almost a running joke with the care team that Amelia was going to have the weirdest side effects that required them to research to find ways to help. There were often times that treatments had to be postponed due to her counts being low, and it felt like we would never be done! Treatment was about 2.5 years long and finally ended on September 8, 2022.

We thought that once treatment ended, that would be the end of it and life would be back to normal. However, that isn’t quite how it happened. Reintegrating into church, friend groups, and family gatherings was harder than we thought - while our lives had essentially stopped during treatment, everyone else’s lives had continued on. Even though our friends and family had created an amazing support system throughout the entire process, we had missed out on inside jokes, relationship building, parties, dinners, and all the things that make up daily life, and it almost felt like we were trying to make the same new friends all over again. Amelia struggled with severe separation anxiety, which came from being separated from Mom during scary tests and procedures during those first few days, and PTSD. Naomi struggled with control issues because she felt so out of control for so long. Mom and Dad struggled with depression, anxiety, and feeling helpless. Cancer treatment is not just hard physically - it is a huge mental game for everyone involved. While most of Amelia’s physical side effects are gone, the mental side effects linger for us all. 

Amelia is almost 2 years off treatment and will move to Survivor Clinic soon. This is a HUGE deal for a child with T-Cell Acute Lymphoblastic Leukemia/Lymphoma. Historically, T-ALL has been very scary because it has been so hard to beat. In the 80s and 90s, about 40 - 81% of children with T-ALL relapsed and did not survive. Amelia was part of one of the first groups of children to receive a drug called Nelarabine as part of her treatment from the very beginning. This chemo drug is now known to reduce the relapse rate and can be used to treat relapse. She also received an escalating dose of a chemo drug called methotrexate, which is important because research showed that the escalating dose was more effective than the high-dose. The combination of the escalating dose of methotrexate and the nelarabine have been shown to increase survival rates in children with T-Cell Acute Lymphoblastic Leukemia/Lymphoma to 91%. This amazing improvement would not have been possible without the research of many doctors and scientists. Research requires money, which the federal government does not provide for pediatric cancer. Out of all federal funds for cancer research, only 4% total goes toward research for all pediatric cancers (more than 12 major types of cancer and over 100 subtypes). It’s up to us to raise awareness and funds to help find a cure!

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Every year in the United States, nearly 16,000 children are diagnosed with cancer.  While research is improving, more children are lost to cancer than any other disease.  And two-thirds of those who do survive suffer long-term effects from treatment.

Our government only allocates about 4% of federal funding for cancer research aimed at childhood cancers.  That's why it's critical that CURE pours funds into research and supporting families - so science, and treatments, continue to advance.

Come join the fight with me to cure childhood cancer while honoring my hero, Amelia!