In the fall of last year, I noticed bruising all over Hendrik’s body, he would complain that he was tired, and then I started to notice red dots along his neck. We then learned he had ALL.
Hendrik just finished the delayed intensification stage of treatment and will be starting interim maintenance next week. Hopefully, after this stage of treatment, he will be in maintenance.
It has changed it significantly. Hendrik had just started kindergarten and was excelling. I had to take time off work right after his diagnosis. We are a single-income family. Thankfully my husband is a full-time stay-at-home parent, but with Hendrik starting school, my husband was planning on going back to work.
Hendrik is a great kid. He’s very intelligent and understands everything going on with his treatment. He may be in Kinder, but reads at a third-grade level and communicates well. He loves to tell jokes to make me and my husband laugh and his smile and personality keep us moving forward.
We had just moved to South Carolina a few weeks before Logan’s diagnosis so we thought his lethargy was due to a change of environment and schedule. The week of his diagnosis, his symptoms increased rapidly and he lost his ability to walk and became severely anemic.
Logan was diagnosed as high risk and given a poor prognosis due to two mutations occurring to his leukemia (Philly-like and Ikaros deletion). He was refractory after two induction phases of chemo.
We traveled to the Children’s Hospital of Philadelphia for Logan to receive CAR-T therapy. He had that done 3x’s.
During treatment, I was let go from my job bc they said his treatment was taking too long.
It’s changed our lives in every way. We have learned so much though and are so proud of Logan, who has beaten every odd he was given. He is doing great, has been cancer-free, and living life as a 4-year-old should. He is our amazing superhero!
Jaxson was diagnosed with ALL on December 15, 2023. Before then, we noticed nose bleeds and bruising. Then he became lethargic and couldn’t catch his breath when playing sports.
He has regular spinal taps now which he gets anxious about. He has been through induction and almost all of consolidation. He still has 4 months of frontline which will be emotionally and physically draining on him. It is hard to juggle work with Dr’s appointments and treatments,
We had to remodel some of our house to get his bedroom downstairs and get him close to us. We are not allowed to go on spring break trips, summer trips, family trips, etc. We are isolated in our home due to this awful disease.
Jaxson is a great kid with a jovial personality! He loves to watch silly YouTube videos and loves food videos even more. He loves to eat and try new things. He loves video games and plays his PS5 online with friends a lot so that helps. Basketball and baseball are his favorite sports.
Hailey was diagnosed with leukemia on January 30th, 2022 just before her third birthday. Her brother was born just four days later so her entire world was turned upside down at once. She just completed over 2 years of treatment on April 11, 2024!
Before her diagnosis, she bit the inside of her mouth and the sore wouldn’t heal, doctors originally thought it was just infected. She was very weak and would refuse to walk due to leg pain.
She has had port placement surgery and port removal surgery, bone more aspirations, lumbar punctures with spinal chemo, chemo infusions, oral chemo, blood transfusions, and platelet transfusions. Our biggest struggles were financial and travel because we live 2.5 hours from our treating hospital.
Hailey’s diagnosis changed a lot for us. We had to spend a lot of time isolated from friends and family and we spent a lot of our time at the hospital and traveling to the hospital.
Orlan had an itchy head, presumed to be cradle cap since he was less than one year old. It was later labeled eczema, yet remained resistant to any treatments to reduce the flakes or itchiness. In April 2024, he had a “goose egg” near the top front of his head. After it not going away for over a week, I showed it to his dermatologist, who said it could be reflecting the infections he was found to have from itching so much that his head was bleeding. When a course of antibiotics didn’t shrink it, we had an ultrasound, then a week later, an MRI. When the MRI showed it was cancer that had eaten through his bone, we brought him back in the next few days for full-body x-rays, blood work, specialist consults (neurosurgery, oncology), and a biopsy of the site. At this point, he had a second, smaller lump on his opposite temple and a third visible only on the MRI. The tests confirmed Langerhans Cell Histiocytosis, multi-system, multi-site, low-risk.
All year we’ve been careful about germ exposure due to his frequent neutropenia. We avoid events with lots of children, have missed holidays, and even hired a monthly cleaner to help reduce exposure in our home. He’s had chemo holds 3 times so far due to low blood counts, meaning we then stay in isolation for 1-2 weeks until his counts are high enough to start chemo and go back to our new normal.
While Orlan remains playful, the cumulative effects of chemo are taking hold – he gets tired more easily and needs a lot of breaks from all of the running and biking that he wants to do. We got a grant for a wagon that he loves to take breaks in if we go to the zoo or somewhere else that now requires too much walking for him.
Both parents are making career shifts to enable more time with family in the years ahead. This year made it clear that family is a much higher priority than career.
Celia was diagnosed with B-Cell Acute Lymphoblastic Leukemia in late October of 2020 when she was just 3 years old and living in Pakistan with our family (This was during the height of COVID when thousands were dying, and before vaccines even existed). Because of the time, we all were required to quarantine and only left the house for necessary reasons. This was why we waited longer than normal to have her seen by a doctor out of fear she would catch COVID. Much was unknown at that time and COVID was a very scary diagnosis that led to death for so many people.
She was seemingly perfect these days… running around, eating, drinking, playing with cousins. One day she spiked a fever and we didn’t think much of it, gave her medication, and went to bed. The next morning she had a blood blister on her upper lip. We figured she bit her lip during the night. Over the next three days, her fever kept returning after her meds wore off, and the blood blister on her lip had tripled in size. Finally, on day three she was seen by a pediatrician. Her blood labs showed she not only needed an emergency blood transfusion but also suggested cancer. We were absolutely devastated. After a long and painful start to her cancer treatment that resulted in COVID and a near relapse (due to a doctor’s deviation from protocol overseas), she was flown to Boston and continued her treatment with Dana Farber.
Once at Dana Farber she was deemed “high risk” and began a high-dose chemotherapy and steroid regimen in an attempt to tackle the cancer once and for all. After three years of intense protocol and countless admissions to Boston Children’s Hospital due to side effects and the nature of treatments, Celia is now cancer-free and living happily.
Celia’s story truly does shine a light on the importance of where you receive your cancer care and how protocol exists for a reason. If she had continued care in Pakistan, if we had not been able to fly her back to Boston, she might not be here today. Without us knowing, her doctor overseas reduced her chemotherapy to 75% and caused her to come within .001% of relapsing. Dana Farber saved her life by doubling down and treating the cancer aggressively after her transfer. We are forever grateful for that.
Our family has since welcomed a baby brother, Adam, and Celia has been promoted to big sister. Today our family practices daily gratitude for the normalcy we have been blessed with and never forget the impact cancer has had on our lives.
