Ava loves, loves her family, and spending time with her sister. She has the silliest personality and this light about her.
She was diagnosed with Acute Lymphoblastic Leukemia in August of 2017. She just finished chemotherapy in January. She did during therapy, now she’s thriving and getting stronger every day!
There were a lot of hard times during treatment especially during intense chemotherapy that left her extremely sick and dependent on pain medication just to stay comfortable enough to rest.
Cancer has changed every aspect of our lives. From doing normal things like going to get groceries to traveling. Ava’s health and wellbeing were taken to a completely different level. A cold could be potentially harmful during intense chemo with low counts.
Riley was given the nickname “Smiley Riley” at daycare when he was going because he is ALWAYS smiling. He loves being silly and exploring. He learned how to walk in the hospital and has been non-stop ever since.
Riley was diagnosed on 11/23/20 with ALL, just 1 week before his first birthday. Riley had a knot on the back of his head that kept growing. We thought it was from him hitting his head about 8 weeks before diagnoses, but ended up being a cluster of cancer cells that populated there. He had no other symptoms.
Riley has had a Hickman line port put in his chest, he’s also had numerous spinal taps and bone marrow aspirations. We spent 31 days in the hospital at the beginning of his diagnosis for treatment and he currently goes to the clinic twice a week and also received medications at home. I have been on leave from my job for a little over a month and just went back. I work from home, but it’s still a lot of adjustment.
We do not have any family in NC currently. Since Riley’s diagnosis, all of his grandparents have been actively working to move closer to us so they can help out more. Riley can no longer go to daycare which he LOVED. So there has and will be lots of change. We are excited to have grandparents closer but hate that this is the reason they uprooting their lives.
I hope he continues to be happy and smiley throughout his entire journey.
Griffin was diagnosed with leukemia in a hospital in Germany on November 11, 2019. We are a military family and were living in Germany at the time. Upon the doctor telling us he had cancer, they said he needed to start treatment that night and gave us two hours to decide where he would receive medical treatment, America or Germany. We frantically called a list of American pediatric cancer hospitals from google repeatedly asking if we showed up at their doorstep in the morning would they accept Griffin as a patient. We broke down in tears when after 15 minutes St Jude said they would take care of Griffin. 12 hours from his diagnosis we were on a plane to Memphis.
He has had so many complications. He currently has a broken foot, heart, and blood sugar issues that require constant care. He has virtually no immune system so he has been under strict isolation since his diagnosis and has to bear daily IV medications as well as many oral medications. He often is in pain.
He has been having chemotherapy for the last 11 months and has more than two years of chemotherapy left. Because his cancer was slow to respond to the treatment he also did an experimental immunotherapy that required him to be on a constant IV infusion for 54 days. He has had more than 12 procedures done under anesthesia that included getting a port-o-cath, PICC line, lumbar punctures with chemo, and bone marrow aspirations. He is currently struggling with keeping his blood sugar and has had seizures due to dangerously low glucose. Currently, we need to test his blood sugar throughout the night and give him corn starch to keep his glucose high every few hours. He requires an immense amount of medical care, but my husband and I and his siblings are all here to support him in any way he needs.
My three children have spent their entire lives overseas in Asia and Europe and with no warning, they left their home and belongings to come to Memphis for Griffin’s treatment. My husband was lucky enough to receive a military assignment to Memphis which has affected his career. Our kids could not attend in-person school, cannot socialize with others, or do any extracurriculars because we cannot risk them bringing covid home to their brother. Every day they sacrifice so much just to keep their brother safe. They have traded soccer, school, and friends for isolation, less attention, and playing doctor. While the kids were accustomed to long separations from dad, they are new to being separated from me as I spend many days at the hospital with Griffin.
In January of 2018, Elia started to get low-grade fevers (99-100) and developed hives that would sporadically fade in and out all over her body. Doctors believed she might have allergies, but my momma gut knew it was something more. Her pediatrician ran a CBC and, because her white blood cell count was extremely low, they sent us to MUSC to rule out leukemia. We spent hours there in a small room watching movies and refusing to believe our otherwise healthy girl would have cancer. The doctors returned with the results and assured us she did not have leukemia and that it was not oncological. We spent months talking to various specialists who ran a multitude of tests – only to come back without an answer. Elia was admitted to MUSC for several days and doctors from each department ran every test imaginable – ophthalmology, rheumatology, infectious disease, oncology, pediatrics, and dermatology. She was released without a diagnosis. Her fevers started to get higher and higher and she was spotted like a leopard with hives. Finally, in April, having no other tests to run, rheumatology recommended a bone marrow biopsy. That is when they discovered she did in fact have leukemia.
Elia has spent the last (nearly) two years on constant chemotherapy treatment. She has had countless rounds of oral chemotherapy, IV chemotherapy, and spinal chemotherapy. She has had painful bone marrow aspirated and has to have a port that was surgically implanted accesses with a long needle more than I can count. We have had to give her injections and have to race her to the ER if her fever goes over 100.3. She has lost her hair and regrown it. She has doubled her weight due to steroids and then sometimes refuses to eat all together. She recently broke her leg just tripping on a carpeted floor because her bones are brittle from treatment. She cannot be in crowds and even sending her to school makes us nervous with things like the flu and measles that could potentially kill her.
Our lives will never be the same again. Elia has spent half her life – all of her memories, as a cancer kid. She doesn’t know what it’s like to be a care-free kid. Our son, who has his own share of struggles with autism, worries about his little sister. My husband and I will always have PTSD, worrying about each bump and bruise. Because of the treatment that is saving her life, Elia will also be at high risk for a long list of side effects as well as an increased risk of other cancers.
Dominic was diagnosed with ALL right after his 5th birthday. He has been undergoing treatment for 3 years and we just found out he can now finish his treatment.
Throughout all of this, we have become stronger, closer, and more resilient! We also appreciate all of the small gifts each day brings and are so grateful Dominic has pulled through this!
Dominic has been a brave warrior this whole journey. He has met each day with a positive attitude and resilience.
In August 2020, Kaleigh was about to start kindergarten and was practicing hard for her upcoming competitive season of gymnastics, when her world was flipped upside down. It started with an ear infection that led to a strep throat infection. She continued with ongoing nighttime fevers. August 17th, I dropped Kaleigh off at gymnastics not knowing that would be her last practice for a long time. I did not know her blood counts were critically low with a hemoglobin of 5.7 along with platelet levels below 75 (her doctors would later tell me they had no idea how she had the energy to do gymnastics). The following day, we learned that our precious 5-year-old daughter had Acute Lymphoblastic Leukemia.
Kaleigh has undergone multiple treatments including chemotherapy and high dose steroids. One of the biggest challenges she has faced was a RARE life-threatening diagnosis of Pneumatosis Intestinalis at the end of the first month of her treatment. Basically, this is when small gas cysts develop in the bowel wall and could rupture. Kaleigh did amazingly well as the treatment was nothing to eat or drink until it completely resolved. This took 15 days. My child has never been so happy to eat!
Although our daily life is different, most days you would never know Kaleigh has cancer. Kaleigh is fierce and such a fighter. She fights the side effects to try to lead as much of a normal life as possible. Her only complaint is the long drive to the hospital (2.5 hours away). She continues to push herself and practices gymnastics at home. I even set up a “pretend” gymnastics competition at home about a month ago that she totally rocked.
Kaleigh is in her 4th phase of treatment (Delayed Intensification) and has one left to go until she gets to Maintenance. Treatment will end in October 2022.
As a family, we have learned to fight together. We are a team and lift each other up. Kaleigh may have cancer, but it does not control her life. Kaleigh is so loved and she is such a determined young girl.
She is our hero…our fighter…and though she be but little she is fierce.
