“Yesterday is history, Tomorrow is a Mystery, Today is a Gift- That’s why they call it The Present.”- Addi’s Family’s Motto
A common cold; this is what prompted Addison’s mother, Kara, to make an appointment with her daughter’s primary care physician. Addi had already completed her wellness appointment a few months prior and was given a clean bill of health, however this cold was persistent and Kara knew she needed to check with the doctor. The family was not expecting the outcome they received, but on August 31, 2015, Addison was diagnosed with Stage IV Rhabdomyosarcoma at just three and a half years old. Addison’s initial treatment plan included 54 weeks of chemotherapy and four weeks of proton therapy. Proton therapy is a type of particle therapy that uses a beam of protons to irradiate diseased tissue and is commonly used to treat children battling cancer. Thankfully, proton therapy affects less of the healthy tissue surrounding the tumor, unlike other types of treatments. Unfortunately, in 2017, after completing many different kinds of treatments, sweet Addi relapsed and again in 2018. She had to endure additional treatments both times to fight this stubborn cancer. Her family travelled to New York to be treated at Sloan Kettering from a rhabdomyosarcoma specialist and received additional radiation there. In total, Addison has completed approximately 90 weeks of chemotherapy, including several months of maintenance chemotherapy. In addition, Addison has also had eight different surgeries. The major surgeries entailed the removal of the original tumor in her abdomen, and the removal of the upper lobe of her lung. She also had two surgeries that removed and biopsied smaller tumors in her body, as well as placing her port to receive the chemotherapy medicines.
This family has really struggled finding their new “normal”, if that is even a possible reality after your child has been diagnosed. Kara explains what it is like battling cancer for so long, “I have been unable to work. My life is researching cancer, especially since Addison's cancer is so rare and trying to keep her as healthy as possible. I have not been able to be involved in my son's schooling as I would have liked. I feel like I missed a lot. We were never able to do toddler playdates or preschool, all the things many others take for granted. My son has taken a back burner to Addi- and that's not fair. He was only four when Addi was diagnosed. He is eight now and we are still battling cancer with her. He still comes in second in many ways. My husband has had to miss a lot of work, so it makes it harder for him to get ahead there. He gets frustrated. It seems like every time we have gotten into a good groove and life is getting calmer and "normal," cancer throws us a curveball and everything changes... again.” Runway to Hope was honored to be able to financially help Addi and her family with gas and food assistance while they were in New York.
Even though Addison has gone through such a difficult time, she still is such a caring little girl. She is always concerned with the needs of other people before herself. Cancer has affected every aspect of Addi’s life, but she strives to be a normal child. Addison, now seven, realizes she has overcome many obstacles and is very different from children her own age, but she never mentions it. She has recently started back to school and enjoys dance lessons. She has a dance recital soon and she is now learning to read. One day she hopes to be like her mother and own a bakery when she grows up!
Rhabdomyosarcoma is a type of cancerous tumor that arises in the soft tissue, such as muscles. Rhabdomyosarcoma in children differs from the form of the disease typically seen in adults. There are two types of rhabdomyosarcoma: embryonal and alveolar. Embryonal rhabdomyosarcoma is seen most often in children under age 5. This form often affects the head and neck, bladder, vagina or prostate and testicles. Alveolar rhabdomyosarcoma occurs in all age groups and often affects the large muscles of the arms, legs and trunk. Soft tissue sarcomas account for about seven to eight percent of childhood cancers. This type of cancer is the most common type of soft tissue sarcomas in children. The disease can occur at any time throughout childhood, but is most commonly diagnosed in children under age six. More males than females and more Caucasians than African-Americans develop rhabdomyosarcoma. Survival rates depend on factors such as tumor size and location and the amount of tumor that can be removed.
Addison is beating all of the odds and has beat this cancer four times! She is a fighter and having cancer will not slow her down. Runway to Hope has had the pleasure of watching Addison walk onstage every year since 2016. This will be her fourth year walking the runway and our team is so excited to watch her shine! Addison has really come out of her shell and we are rooting for her every step of the way. If you wish to cheer Addison on, along with other children just like her on the runway, please attend Runway to Hope’s Spring Soiree on May 18th, 2019. Please call our office at 407-802-1544 to purchase your tickets today!
Runway to Hope / 189 South Orange Avenue, Suite 1800 / Orlando, FL 32801 / 407.802.1544