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.
Vincent was diagnosed with Rhabdomyosarcoma in July of 2021. He has done 10 months of chemo with 6 weeks of proton therapy. He has tolerated everything amazing. We praise God for the miracles of healing as he had a complete response to his treatments and the tumor is GONE. We pray that it NEVER returns. We are at the homestretch of our frontline chemo and he will have 6 months of maintenance chemo after.
This diagnosis has been life-changing in many ways. We have grown as a family and grown stronger in our faith. We have found a passion and a purpose to be an advocate for pediatric cancer and the attention it deserves and needs. We are able to see our amazing son fight with strength and grace and the support of the rest of our loved ones has been overwhelming. We will forever be changed because of this journey and pray through the grace of God the cancer never returns. We will live to spread God’s glory and help all those in need.
Vincent is an amazing little boy, whose attitude and strength are inspiring to all those who meet him. HE WILL BEAT THIS!
My daughter was diagnosed with Rhabdomyosarcoma in September of 2016. We noticed that Aliya had one calf muscle that was bigger than the other one. She played and acted like a normal 3-year-old so we really didn’t think anything of it. She was not complaining or in pain at all. We took her to see physicians but it was misdiagnosed several times. One doctor even told us it was probably the result of a bug bite!
By the time we received a cancer diagnosis, the cancer had spread to other parts of her body and she was diagnosed with stage IV. She completed 42 weeks of intensive frontline chemo, in addition to a full two years of maintenance chemo. She has had countless MRIs, CTs, Ultrasounds, PETs, X-Rays, and blood draws.
At the end of her 42 weeks of treatment, she was also diagnosed with PTSD. She faced many struggles throughout her treatment and became very fearful of medical personnel. She has also since been diagnosed with a learning disability which also makes school a struggle.
We cannot imagine what our life was like before cancer. We were so carefree. It’s hard to imagine. We are so happy that she made it through treatment and is cancer free, but her physical and psychological struggles remain. We try and lead as normal a life as possible, but it’s hard to relate to other families who have not had the same experience.
