My son Rocky was diagnosed with ALL on March 10, 2020, right when the pandemic started. He was only 13 at the time and his whole world changed along with dealing with covid. He was diagnosed with Tcell Acute Lymphoblastic Leukemia and endured 2.5 years of treatment. He had nine months of intensive treatment called frontline where he went through so much chemo and procedures to count. On July 27, 2022, he got to ring the bell and take his last chemo pills. Chemo does a lot to childhood cancer fighters and they continue to deal with the side effects, He is now going to be 18 at the end of March and will be graduating in June. I am beyond proud, blessed, and happy for his next chapter.
Willie was diagnosed with All on February 15, 2022, at two and half years old. He had constant bruising, petechia, and random fevers on and off over a few months.
He has been going through treatment for the last two years, harsh chemotherapy drugs, and intense protocols. He has had over 20 spinal procedures, 3 bone marrow biopsies, and over 10 blood/platelet transfusions.
Emotionally this has been the hardest to navigate. Having your baby and such a young child with cancer and then having to go through all of the treatments, knowing he has a full life ahead of him. But we’ve become a stronger family through it all and our son’s strength has kept us the strongest. We’re very optimistic and looking forward to the day he’s done with treatment.
In April ’24, Addison was diagnosed with Stage 4B Hodgkins Lymphoma after a series of perplexing symptoms. It all started in January when she began itching her feet, initially assumed to be athlete’s foot due to her basketball activities. However, despite treatments, the itching persisted and spread to her legs, accompanied by chicken pox-like spots. A dermatologist diagnosed dermatitis, but treatments failed to provide relief.
As weeks passed, the itching worsened, spreading to her entire body, along with red spots on her legs, ears, face, and arms. Various specialists, including an allergist who suspected scabies, were consulted, yet no diagnosis seemed to fit. Addison’s health deteriorated rapidly, marked by a 20lb weight loss, fatigue, and incessant itching. Despite efforts such as a gluten-free diet to address suspected celiac disease, symptoms persisted.
After a skin biopsy revealed severe inflammation, Addison was prescribed Dupixent, but even this provided no respite. Concerned and persistent, we reached out to her primary care doctor once more. Suspecting something more serious, she ordered further tests, which revealed alarming levels of inflammation. This prompted a referral to Dr. John Hill, a pediatric oncologist.
The subsequent whirlwind of medical evaluations confirmed the devastating diagnosis of Stage 4B Hodgkins Lymphoma.
Addison’s recent news has been quite challenging to come to terms with, but we’re committed to confronting it with resilience and optimism. She has been withdrawn from school and has had minimal interaction with her friends since receiving the diagnosis. Additionally, we’ve had to withdraw her from both recreational and competitive softball teams for the summer. Her usual plans for summer school and basketball camps have also been put on hold. We’re even considering whether to proceed with our previously scheduled camping trips and a potential trip to Ohio later in the summer.
Our family’s primary struggles revolve around managing schedules, continually packing hospital bags, grappling with medical terminology, and maintaining communication. The process of dealing with a child’s cancer diagnosis feels like a full-time job, encompassing communication with employers, coordinating with the primary care physician, exploring available resources, rescheduling previously planned appointments, updating family, friends, and coworkers, liaising with hospital billing departments, coordinating with the hometown pharmacy, and establishing relationships with the insurance’s specialty pharmacy for her chemotherapy medications. The sheer volume of tasks can be overwhelming.
Addison’s cancer diagnosis has profoundly impacted our family life in myriad ways. Firstly, it has shifted priorities, placing Addison’s health and well-being at the forefront of daily concerns. Family dynamics have adjusted to accommodate her medical needs, with schedules revolving around appointments, treatments, and hospital stays.
Emotionally, the diagnosis has brought about a range of responses, from shock and disbelief to fear and sadness. Each family member is coping differently, navigating their emotional journey while striving to support Addison too.
Addison is a remarkable 10-year-old girl with a vibrant personality that shines through even in the face of adversity. Despite the challenges she’s encountered, she maintains a resilient spirit and a contagious sense of humor that uplifts those around her.
Izzy (Isabel) was diagnosed with B cell ALL in January of 2022. Before her diagnosis, she was experiencing fever, paleness, and bruising. I didn’t like how she looked so I insisted on labs and the pediatrician was on board. We got a CBC and another two weeks later then we were diagnosed.
She has had many sedation procedures for lumbar puncture, central line placements, and removals along with two years of chemotherapy and many, many weeks inpatient at the hospital. She has also had every scan and blood test imaginable. Izzy may need open heart surgery to remove the blood clot in her heart. She is fearless, kind, and optimistic. She calls herself the “blonde” Annie!
Raifeartaigh was diagnosed with hereditary retinoblastoma on 02/28/2024. We were out to eat on 02/25/2024 and I saw the spot behind his pupil and immediately knew what it was. We left the restaurant and went to the ER for confirmation. Our son was in to see an ophthalmologist on 02/26. He was in Miami on 02/28 and got formally diagnosed and he lost his left eye on 03/01. Currently going through chemo for tumors in his other eye.
He has had an eye removal and chemo. For every treatment and exam, he is sedated. There are many struggles in this ever-evolving situation.
Every aspect of life has changed. We have emotional struggles and financial struggles. We try to ensure we stay as healthy as we can ourselves, remembering to eat, sleepless nights, and overwhelming days, and second-guessing our decisions in regards to healthcare decisions.
Our sweet baby Lennon was diagnosed on July 13th, 2023. It was a Thursday and a day that truly changed our lives forever.
Our Lennon picked up every virus for several months and it just seemed she was constantly sick, with her sister in school that’s not atypical, but it just seemed like as soon as we got her well, she would get something else.
But two weeks to the day she got diagnosed, she started having random fevers. No other symptoms just fevers and they would be fairly high. The first one started on a Thursday and it would just come and go, we watched it till Monday and her pediatrician got us in that morning. By that point, the fevers went away. They did blood work and everything was ok, her labs showed inflammation but right in line with what would be a mild viral infection. Nothing that would be an immediate concern. Our pediatrician is truly amazing and she was absolutely on top of everything. She wanted to watch and see if the fevers came back and we would go from there. The fevers would randomly come back for a day and then stop for several days and continue a weird cycle. And again no other symptoms. It was so strange. We were getting ready to go back for a recheck and Lennon woke up that morning and couldn’t use her right leg and there hadn’t been a fever for a couple of days. Her pedi took one look at her and told me to take her in, she was thinking it could be an infection in the joint due to what we thought was a viral infection.
We spent so long in the ER and by this point her labs were off the charts showing an infection, they did ultrasounds and sonograms of the knee, leg, and hip trying to see if there was any fluid, etc. but couldn’t find anything. They started the admission process to do a sedated MRI the following day when the PA reached out to one more person to explain the bizarre symptoms and to get a second opinion. That person said they only had one other kiddo who presented the same way and ordered another ultrasound but this time of the adrenal area above the left kidney… and that’s when they found it. She had a 3×4 inch tumor in her tiny little body. And they knew pretty immediately it was Neuroblastoma.
After so many tests and biopsies of the tumor, it showed Lennon carries the two unfavorable genes and her cancer is the most aggressive form of Neuroblastoma. It already was metastatic to two areas, one in the right knee and the other in one vertebra.
Lennon has gone through 5 rounds of chemo, two bone marrow stem cell transplants accompanied with the highest dose of chemos, 12 rounds of radiation, and now 6 months of her hopefully last stage of immunotherapy/antibody treatment. She has spent over 200 days in isolation, and in the 10 months so far she’s spent more time in the hospital than out of the hospital.
Cancer has changed our entire lives. Our life will forever be, before cancer and after cancer.
We are a really close-knit family and share everything. Overnight it’s like we were separated. One of us was always with Lennon and the other was with our 7-year-old. And then we would switch. It’s been the hardest year of our life, but we are just so thankful to have Lennon here with us. Neuroblastoma is so unbelievably aggressive and sometimes it’s caught too late. We’re just thankful she’s responding to treatment.
Lennon’s the strongest girl. We call her our Giant Slayer like David in the Bible. She is small but so mighty and even though the odds are stacked against her, we believe she will conquer this giant!
