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!
Tawhai is very cheeky. He is OBSESSED with anything electrical. He says he wants to be an electrician when he is older. He loves fans and lights. He wants to know how they work and if they are broken, he wants to figure out how to fix them. The typical 4-year-old boy stuff makes him laugh like farts, poop, and tickles.
Tawhai was diagnosed with Alveolar Rhabdomyosarcoma in September of 2021. He had recently fallen over while away camping and hurt his back and leg (that’s what we thought) and he had a lump on his calf which we put down to falling over. We went to the doctors, who then sent us to a specialist, which led us to be admitted to the hospital for an MRI. Then we were flown 1000 km away from home to Brisbane for a biopsy which confirmed he had cancer.
Tawhai is doing one year of chemotherapy, then six months plus of maintenance therapy. He will have radiation in between chemo sessions and/or surgery. Due to his treatment(s) he tires easily.
Cancer has changed our lives significantly. We moved over 1000 km from our hometown in Moranbah, to Brisbane. Tawhai has had to stop Kindy and postpone the first year of school next year. Our 7-year-old daughter has had to move to schools as well. I have had to quit my job and my husband has to do fly in and out for work so he will be away for half the year. We have had to move away from family and friends to somewhere we know no one.
Tawhai’s cancer is an aggressive cancer of the soft tissue. His primary site is in his calf with bone marrow and lymph node involvement. It has traveled to his thigh and his spine. He has been given less than 30% chance of beating this but we know he will.
Serenity is a real princess. She is joyful, playful, and full of life. She loves rainbows and unicorns. She’s a jokester she just loves to laugh and is very silly!
Serenity was diagnosed with Rhabdomyosarcoma on September 16, 2021. Prior to her diagnosis, she had a knot on her right arm that grew rapidly and it had swollen her right hand as well.
Serenity has undergone radiation treatment and is actively doing chemotherapy. This has really been a trying time for our family because we are away from one another a lot due to traveling back and forth from Louisiana to Memphis for scans and any other procedures that she may need. When we are home we are constantly in the hospital due to low blood counts or side effects from chemo.
Serenity has less strength in her right hand and has periodic numbness. She also needs assistance with dressing herself because sometimes she has no strength on that side of her body.
This experience has been an emotional roller coaster and has been a challenging time for all of us.
Virgil loves animals just like his big brothers. He is such a happy and silly little boy. His smile is infectious and he loves to laugh and make us laugh.
Virgil was diagnosed with Rhabdomyosarcoma on January 18, 2022. One evening when Virgil was about 7 months old, we found a “bump” on the side of his stomach. The next morning we went to our pediatrician’s office, and that Doctor seemed unconcerned, but it didn’t sit well with us. So, we went back the following day to our favorite Nurse Practitioner at our Pediatrician’s office and they ordered scans and a consult with a surgeon. The surgeon we met with assured us we had nothing to worry about, and that it was certainly benign. They said we will monitor and once he is a year old, we will remove it. After difficulties contacting their office, we met with another surgeon who said they would take it out the following week. The tumor was removed and following the holiday weekend we received an unexpected call to come into the surgeon’s office. It was at this time, we were given the news.
Virgil has already undergone 3 surgeries, 5 weeks of radiation, and 39 weeks of chemotherapy. He has 29 weeks remaining. Because of the intensity and demand of his treatment, I (Virgil’s mom) have been out of work since February. As a family of 5, we have faced many financial struggles. One of the biggest challenges though has been all of the time our family has been separated throughout the last year due to treatments and unexpected complications.
We spend a lot more time at home than we used to and a lot more time indoors (Virgil needs to limit his exposure to the sun). Unfortunately for Virgil and myself, a lot more time in the hospital as well. We have dealt with many hardships, but we have also grown to cherish the moments we are all together at home even more.
Virgil has impressed so many people throughout his treatments with his smile and resiliency. We are blown away by his strength and ability to handle everything he’s gone through.
