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.
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.
Erialys was diagnosed in February 2022 and had a relapse in July 2023. We had to travel to St Jude for a bone marrow transplant. In relation to the transplant, thank God she has been very well, but two weeks after the transplant she became very complicated to the point of almost dying in December due to multi-organ failure and a virus. She has survived many things and that is why we want to make a photo section to remember such a bitter moment and so that she always remembers how strong she is and how strong she can be.
She is a very happy and affectionate girl, with a strong character and great personality!
Harper was diagnosed with T-cell leukemia on 10/6/21. She has fought for two and a half years and is due to ring the bell this coming Monday 3/4/24.
She got sick and had this lingering cough that wouldn’t go away. I took her back to the doctor several times and they sent us away. She was also having weird symptoms prior to this that had me worried. Finally they did an xray and found a melon sized tumor in her chest which lead to diagnosis. Her treatment includes chemotherapy, steroids, lumbar punctures, bone marrow aspirations, blood transfusions, and so much more.
This has robbed us of time. I was so focused on my child with cancer that her two sisters were left in the background a lot. Cancer has brought anxieties to her sisters that we’re trying to manage. It truly affects the whole family, not just the patient in so many different ways.
In April 2017, Kabir complained of wrist pain after his family returned from a Disney cruise vacation. Nothing was found on the X-ray, but the following week he started having severe ankle pain and intermittent fevers. His pediatrician saw him two days before he was diagnosed but during the day in between, his mom felt like something was very wrong. Kabir lost his color, had dark circles around his eyes, and looked extremely fatigued. They went to the ER the following day and he was diagnosed with acute lymphoblastic leukemia within the hour. That same day, doctors transferred Kabir to Lucille Packard Children’s Hospital at Stanford.
He was diagnosed with PH+ ALL in April 2017, relapsed in CNS in July 2019, received car-t at CHOP, and relapsed in organ in July 2020. He then went on to a BMT and dealt with many complications to this day.
