Margo has a very contagious laugh and cracks up over anything silly. She is very girly and loves princesses and anything that sparkles!
Margo was diagnosed with Wilms Tumor on May 5 2023. Before her diagnosis, she was not eating much, had a low grade fever, and was sleeping 15+ hours a day.
This journey has allowed me to see what a fighter my Margo is! It has brought my two daughters closer, while separated them (and me from my older daughter) while we were in the hospital for months.
Sofia had a UTI that started in October of 2022 that would not go away even with antibiotics. She had an ultrasound done of her bladder and kidneys in November which showed nothing. She was hospitalized in December 2022 while we were in Florida visiting family, was experiencing excruciating pain when she would urinate they did a ultrasound at the hospital and saw something this time they believed to be a blood clot because childhood bladder cancer is very rare. They told us to follow up with urologist when we get back to Maryland. She started to have heavy bleeding in her diaper at this time too. She saw the urologist on January 20, 2023 he did a bedside ultrasound and suspected the tumor. She was diagnosed with rhabdomyosarcoma on January 31 and by February 3 she was in surgery having her port placed and received 3 different chemos that night.
She has a port in her right chest and a feeding tube. She lost a lot of weight in the beginning and required the NG tube then feeding tube. She had 28 radiation treatments to her bladder. Countless MRI, CT scans and Pet scans. Also for the fist 2 rounds of treatment she required a urinary catheter because the tumor was at the base of her bladder coming down her urethra.
Sofia always is smiling she has so much strength in her little body!
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.
Carson loves to laugh and go on adventures with his family and friends. He is always concerned with his loved ones and wants to ensure everyone is having a good time. He loves volunteering with his school and church groups and is captain of his high school Speech and Debate club.
Carson was diagnosed with leukemia in 2017. Before his diagnosis, he had a fever for a week, leg pain, and extreme fatigue. He had three years of treatment and that has caused some chronic health issues.
It was the worst experience of our life, but we try and look at the positive and there are a lot of things it has taught us as a family, to appreciate life’s moments and not to sweat the small stuff.
Scarlet was diagnosed on 12/06/2021. She has a very rare cancer and had a weird gene mutation which caused regular cancer treatment not to work. In the end, we ended up having to do a right below-knee amputation.
We had noticed an odd-looking mark on her right foot since birth, it started out looking like a bruise, and each visit we mentioned it, it would get bigger and then a lump started to form. She also started walking differently and not putting pressure on the right foot.
Since her amputation, she has developed complex regional pain syndrome in that leg as well now, we never know how each day will be pain-wise. There are many days that her prosthetic leg doesn’t work and she is limited to her wheelchair or knee walking.
Our lives have changed and we know we are going to be going to either doctor’s appointments or leg appointments almost every week. We have had to make accommodations in the house and outside to help with her physical disability. It has been hard on her two siblings watching her go through treatment and then the amputation. Her dad had cancer five years prior and this has brought up a lot of emotions.
Scarlet is resilient and amazes us every day with what obstacles she overcomes. She loves horses and her brother and sister so much.
April was diagnosed on December 15th, 2023 with Wilms Tumor. Her cancer was discovered at her 18-month well-check. She started radiation the week of Christmas of 2023. We lost our daughter in August of 2023 then 4 months later found out our child had cancer. It’s been a crazy journey of trying to process the grief of our baby girl and then finding out our other daughter has cancer. It has been multiple hospital stays, long ones and she has gotten a lot if attention, and our oldest, our son, has felt that.
Although she is almost done with her journey, she will be monitored for the next 5 years of her life. We will have to explain to her and answer her questions on why or how this happened and why she has so many appointments. I know she won’t remember much from these visits, I hope she doesn’t. But as she gets older, she will be confused as to why she has to have these “normal” routine visits.
