Sofia is enjoying school with her friends after being homebound for one full year. Sofia loves all things artsy and creative, especially designing new outfits and accessories for her dolls and making custom bracelets. She is learning to sew and hopes to be a fashion or jewelry designer when she grows up. She also loves stuffed animals, particularly her stuffed penguin collection including her favorite, Dr. Waddles.
In early 2016, Sofia was having pain in her legs, hips, lethargy, weight loss, pale skin, fever, and difficulty walking. She was diagnosed with High Risk B-cell Acute Lymphoblastic Leukemia on January 7th, 2016. She had surgery, intense IV chemotherapy, more than 22 (and counting) spinal taps with intrathecal chemo, chemo injections in her arm, oral chemotherapy nightly, 2 bone marrow biopsies, has to take steroids and antibiotics regularly, physical therapy, feeding tube, Veno-occlusive disease (severe liver issue due to chemo). Her treatment will continue for a total of nearly 2.5 years.
Sofia’s cancer diagnosis has changed nearly every aspect of our lives. Our once healthy, active child became extremely frail, underweight, bald and immunosuppressed. She missed an entire year of school and endured many hospitalizations, side effects from chemo, isolation due to her low immunity. Her brother (aged 9 at her diagnosis and now 11) could no longer play with her like he used to, couldn’t invite any friends over, was taken to school and activities by our family and friends. My husband and I often took turns sleeping at the hospital with Sofia so the other could be home and allow Sam to sleep in his own bed. Our family has often been split up in order to allow each of our children to have a parent present with them at all times. Through everything my husband continued to work full-time without ever missing an appointment at the hospital.
Sofia has been asked to be the Leukemia & Lymphoma Society’s 2018 Charlotte Girl of the Year, which she is very excited about because she loves helping raise awareness and more importantly hopes to inspire people to take action in the fight against pediatric cancer. Behind her shy exterior lies the heart of a budding activist!
Dyani is very sensitive to the needs of others- especially small children and the elderly. She is so brave and patient. She loves to cook! In fact, that was her make-a-wish, to be a chef. She has a sophisticated sense of humor. She is an animal lover. We have quail, ducks, chickens, and a dog. She is also a proud big sister who loves deeply. She says she wants to be a dragon so she can fly. Her alter-ego is an archer/warrior.
When she was five years old, she had debilitating back pain, leg pain, numbness in feet, a quick decline in appetite, and finally labored breathing the night before being diagnosed with Acute Lymphoblastic Leukemia. Her treatment plan was 8 months of Frontline (the really hardcore chemo). Then she had daily oral chemo and once a month steroid pulses for five days. She also had to have a spinal tap with chemo every three months. We had several inpatient stays and the ER visits are quickly adding up.
Childhood cancer has caused a lot of added stress to our family. We have PTSD, anxiety, lack of sleep, frequent headaches, weight gain. Our 2 year old can’t sleep through the night and we spend many dinners separated from each other. My husband is working 50+ hours a week plus two hours of driving each day in return for being able to go to clinic with us. The bills are never ending!
This has been a complete rollercoaster. “Maintenance” is just as hard if not harder than the hardcore frontline treatment. Having a 4 month old at diagnosis has been a challenge. The doctors and nurses have front-row seats to watch my children grow up. He is now 26 months and a whole new type of challenge. Her body is tired and she has 4 months to go, God willing. She has “plans” for a huge end of treatment party in Tennessee for her clinic friends and my husband’s family. We will also have one in Ohio for my family-many of which are elderly and cannot travel. We are counting down!
Marlee is a very funny little girl. She can always put a smile on anyones face. She is smart and brave. She loves to do legos and play doh. She wants so badly to do gymnastics but we have to wait until her port comes out. She loves to pretend she is in gymnastics class at home. She loves her little sister and she loves to help take care of her. She has a huge heart and is turning into a very kind and caring little girl.
On November 23, 2016 she was diagnosed with Acute Lymphoblastic Leukemia after experiencing back pain, fatigue, vomiting, and high fever. She was very high risk so we speny 10 months house bound other than her doctor appointments. She has had 3 bone marrow biopsys, 21 lumbar punctures and weekly chemo for 10 months.
I was working full time as a nurse and had to leave my job to ensure Marlee got the best care possible. It has left us in a tough financial situation. Also trying to explain to Marlee why she cant be a normal kid and play with other kids has been difficult.
We think of life totally different now. Every little moment matters because in an instant your life can change. We are all a lot closer now and we always try to make time for our family. Before Marlee’s diagnosis, we were so caught up in the everyday business of life. Now it has become more about family and spending time together as a whole.
Gianna is always smiling and enjoys making other people smile. She wants to be an Oncology nurse practitioner and is currently in her second year of nursing school. She still goes to school online and still has a 4.0 GPA. Gianna loves giving back! She organized a toy drive for the children at Sloan Kettering Hospital where she is treated. Gianna has taken her story onto social media to inspire others to be brave in the face of darkness. She loves the beach and traveling. When she is better she wants to study abroad and participate in Doctors Without Borders.
Gianna’s cancer diagnosis was a complete shock to us! She was a perfectly healthy 19 year old who was very active and athletic. She went for blood work so she can start her nursing clinicals at school and that is how we found out.
She has had many different procedures and treatments; including a bone marrow biopsy, intrathecal chemotherapy, intense chemotherapy and many spinal/lumbar punctures. We almost lost Gianna this past summer as she was sepsis. She was in the ICU and when I looked over at her she was still smiling. She amazes me!
I am a single parent who works full time so this has definitely been hard financially. But cancer has brought us all closer and we are more appreciative of each other. We learned not to take life for granted and to always give back.
Mia is our light in the dark. Her laughter is really contagious and she loves wholeheartedly. Mia thinks of others before herself. She comes across super shy at first but as she gets to know you, her personality comes out.
Shortly before Mia’s 5th birthday, she started limping and complaining of pain. She’s never been seriously sick in her life so we watched closely and within the couple days, she got worse. We took her to the ER and they ran tests. Couldn’t find anything that stood out but they admitted us for 5 days for antibiotic treatment and that seemed to help and we were sent home. Fast forward about 3 weeks after her birthday and her pain had returned, but 100x worse. My husband rushed her back to the ER. I was out of town so I found a return flight back home so I could be there with her. At that second time, her blood panel was all off. They didn’t know what was going on but treated her as the labs came back. That meant several blood sticks, scans, procedures. After two days of being on antibiotics and testing, they called the pediatric oncologist for a consult who assured me that he thought it was just a viral infection but wanted to ease his mind and do a bone marrow biopsy to rule out leukemia. It was scheduled for the 13th of February. The biopsy was supposed to take 4 hours to get back and it ended up taking 11 hours as they cross checked and re-checked it all before telling us that she had Leukemia.
Mia isn’t a fan of being accessed and I think that has to do with all the pokes and procedures she endured before she was diagnosed. But we try hard to accommodate her every needs prior and let her have as much control in the situation. She’s really tolerated chemo well with minor setbacks thankfully.
Knowing we have an immunity compromised child has been a struggle as we are a family that loves to have any chance at being out spending quality time together and be outdoors. The planning aspect of it all; packing masks, wipes, hand sanitizer, chemo meds has now become my new normal. Watching everyone stare and point at her wearing a mask and ask ME if she’s the contagious one has been mind opening and taught me patience with the uneducated. It’s really opened my eyes at how many people don’t understand that children get cancer too.
We are seriously blessed to have an amazing family support system. I know that no matter what, I can always count on my family to help and my other kids have just been so amazing and calm throughout this whole ordeal. We talk a lot about things and no subject is off limits. I feel that’s helped them adjust as best as they have.
Josiah is a sweet kid. He loves video games and soccer. The best thing about my kid is his personality. He is always caring for others even when his needs are the ones that need to be met. His appearance has changed over these past few months but his smile lets me know he will be ok.
He was diagnosed with Acute Lymphoblastic Leukemia just before his 6th birthday. He was having constant fevers and body aches before his diagnosis. Josiah suffers more from fear and anxiety from all the non stop medical exams and procedures.
Cancer will change your mindset no matter who in the family has cancer. We had to go from having two jobs to one to take care of the needs of our son. There are precautions and sleepless nights. You are forced to be strong because you have no other option.
