Henry was diagnosed with rhabdomyosarcoma last month and has already completed his first month of chemotherapy.
Before his diagnosis a mass was found on his body which led to further testing and answers.
Because Henry is immunocompromised he cannot be in large crowds or spend time with friends at school. His treatments have included both chemotherapy and surgery. One of the hardest challenges for his family has been helping him keep up his appetite while balancing frequent hospital visits.
Life for Henry and his family has changed in every way. Their days now revolve around home care and weekly trips to the hospital but they stay focused on supporting him through each step.
Henry is an amazing little boy who loves cars monster trucks and Spiderman. His bright spirit continues to shine even during treatment.
Zev was diagnosed with rhabdomyosarcoma in September 2024. His journey began unexpectedly. He had been struggling with constipation, but it wasn’t until he visited the doctor for walking pneumonia that things took a serious turn. During that appointment, his pediatrician ordered an ultrasound and a hospital-grade enema. It was during the ultrasound that the radiologist spotted something unusual.
Since then, Zev has been through chemotherapy, radiation, and surgery. Because of his diagnosis, he cannot participate in contact sports, but that hasn’t slowed his spirit. One of the hardest parts for the family has been balancing time and attention. Zev’s siblings have become more clingy, and his parents work hard to make sure they all feel loved, included, and supported during this difficult time.
Zev has a bright and curious mind. He loves silly jokes and dreams of becoming an engineer. He’s a whiz with LEGO and absolutely loves doing math. Superheroes also hold a special place in his heart. His strength, smarts, and sense of humor shine through even the toughest days.
Zev’s story is one of resilience, love, and a family doing their very best to navigate the ups and downs together.
In March of 2022, our world changed when Waverly was diagnosed with cancer at just 14 months old. It all started with a small lump near her nose—something so seemingly simple, yet it led to a journey we never expected.
Since then, she has been through so much—chemotherapy, radiation therapy, and multiple tumor resections. Despite everything, she has no current limitations, and we are incredibly grateful for that. But as an immunocompromised child, we have had to restructure our entire lives to keep her safe while still letting her enjoy just being a kid. It’s a constant balance—one we navigate every single day.
Through it all, Waverly remains the most outgoing and adventurous little girl. She absolutely loves being outside and meeting new people! Her joy is infectious, and her strength inspires us daily.
These moments mean everything to us, and we can’t wait to have them to look back on forever.
when Jacob was 11 months old he was getting fevers and then he started with flu symptoms. I took him to his pediatrician and he gave him meds. He got better but I started noticing his belly growing and it was hard, he stopped eating and playing. I got concerned so I took him to the hospital. Another doctor saw him and diagnosed him with colitis from the flu. We went back to the hospital again because his stomach was still growing and a different doctor diagnosed him with gases. Three days later, I took him to the hospital again and his main pediatrician was there so as soon as he opened Jacob’s shirt to check his abdomen. He turned pale and sent him for an ultrasound.
Thirty minutes later, he told us that Jacob had a big tumor on his abdomen and that we had to go to the emergency room. They were doing lots of labs, CT scans, and a biopsy as soon as possible because his abdomen was growing each day.
On 01/03/24 Jacob was diagnosed with rhabdomyosarcoma and started his first chemo that day. All his organs were so squished that all the fluids from hydration went to his lungs and started having problems breathing so he went to the PICU and he got to be intubated for a whole month.
On January 12th, his birthday, he was so sick the oxygen machine was on the max and it wasn’t doing anything for his lungs anymore so the only option was to do an emergency surgery, they had to open his abdomen and leave it like that to let out pressure.
Thank God there were no complications. The doctors and nurses were so scared because no one knew what was going to happen but he is a warrior! From there everything started getting better. Every week he went to the OR to change the wound vac dressing. He had his abdomen open for 2.5 months but that didn’t stop him. After he was extubated, and dealing with the withdrawal from all the meds he was for a month. He started getting PT and crawling, standing up, and talking again. He is my little miracle!
On March 26th it was the big day to remove the tumor and close his abdomen, it was an 8-hour surgery and everything went really well. The tumor was removed completely and he came out with a normal belly.
Our world fell upside down, there were so many things going on, and he was getting sicker every single day, but now he has been doing much better. He is a warrior!
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!
Owen was diagnosed with cancer in October 2022 at 10 months old. He was born with a tumor in his abdominal wall. It was initially found during the 20-week prenatal ultrasound and he was monitored closely throughout the pregnancy with a couple of MRIs and countless ultrasounds. It remained stable throughout the pregnancy.
When he was born, an initial biopsy indicated it was a benign tumor called a myofibroma. This type of tumor is usually slow-growing so Owen’s medical team recommended a watch-and-wait approach.
He had a MRI at 4 months old that was stable and then an ultrasound in mid-July 2022 at 7 months old which also appeared stable.
In late August 2022, Owen was admitted to Children’s Hospital for high blood pressure and fast breathing. Another MRI revealed that his tumor had grown rapidly and significantly since his last ultrasound. It was putting a lot of stress on his little body. On 9/1/22 he underwent an urgent and major surgery to remove over 90% of the tumor. The pathology from the surgery initially looked just as it had when he was born- like a myofibroma.
Owen recovered well from surgery but then about 4 weeks later started becoming irritable. At the beginning of October 2022, he was again admitted to the hospital and it was confirmed that his tumor was growing again. Surgery was not an option and so the team was now recommending chemotherapy to shrink the tumor. In addition, they sent out his tumor for a second opinion on the pathology since it grew so aggressively. In mid-October 2022 his tumor was reclassified as a malignant tumor called spindle cell rhabdomyosarcoma.
With being just a baby when he was diagnosed with cancer, Owen had a hard time gaining weight and staying on his growth curve. He ended up getting an NG tube to help him grow and gain weight. Additionally, from having two major surgeries and feeling sick and weak from chemotherapy, he had a difficult time catching up on his gross motor skills like crawling and walking.
We’ve tried to keep life as normal as possible for Owen’s older brothers, but it is hard not having the time or energy we’d normally devote to them. The big boys (and our whole family) have needed to miss out on special events due to the circumstances. We’ve also dropped days of work so that one of us can be with Owen each day of the week for the countless appointments and unexpected trips to the clinic or hospital.
Owen is the youngest of three boys and he LOVES trying to keep up with his big brothers – they make him laugh the hardest out of anyone. He also loves trains, school buses, tacos, and Bluey!
