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.
Harshit was diagnosed with a combination of rare cancers on November 4th, 2018. He has undergone a very aggressive treatment which includes many chemotherapy cycles, major thoracic surgery, and a bone marrow transplant for which he had to stay in the hospital off and on for over a year.
Harshit had a low-grade fever, coughing, and facial swelling for over three months which was misdiagnosed as allergies and viral infection. We took him for a chest x-ray in urgent care where they saw a huge (8” by 8” by 3”) tumor in his mediastinum covering almost all of his right lung. The tumor was cancerous and was diagnosed as a mixed non-seminomatous germ cell tumor. It was later found that along with this he also has Leukemia ( AML M7 ). After his tumor was taken out it was found that he also had a third malignancy, Rhabdomyosarcoma.
He has undergone many chemotherapy cycles, major thoracic surgery, and a bone marrow transplant. He is not undergoing treatment right now but has frequent visits to the hospital for tests and scans.
Harshit’s diagnosis has changed our life. We were living in the hospital with him for many months because he was extremely sick. My daughter was his bone marrow donor ( she was 14 then). Since we have no family in the USA, things have been difficult.
Harshit has some long-term side effects from his disease and treatment but we are grateful that he is cancer-free now and life is moving towards normal (new normal). He has a very positive attitude which has been the driving force for his miraculous recovery.
Just before Aleina turned 2 yrs old, she started making these frowning faces, more like “mugs” to communicate her displeasure or defiance. She’s a master now but also learning to verbalize more. Those moments of independence can be trying yet also funny and rewarding; watching her grow, learn and become more and more independent. Her favorite shows right now are Cocomelon, Word Party, and Sharkdog. She also enjoys music.
Aleina was diagnosed with Rhabdomyosarcoma in October of 2020 when she was just 10 months old. Since she was so young, we had suspected she had fallen and hit her nose. However, her nose continued to swell, appearing to be a cyst on the inside of her left nostril. One day, Aleina would not stop crying, although previously she appeared unbothered by the swelling. Her cries led us to take a trip to the ER. That visit to the ER led to a referral to an ENT. After several appointments with ENT, it was decided surgery would be the best option to remove the cyst and biopsy it. Though the doctors were almost certain the cyst would be benign, we were given the devastating news that was not the case.
Aleina had an initial surgery to remove the cyst and a separate surgery for port placement and bone marrow aspiration. Once her treatment began, she completed 4 weeks of Proton Radiation. She began Chemotherapy in November 2020, just after her first birthday, and recently started the maintenance phase of chemo.
One of the struggles we have faced is Aleina’s inability to communicate when she is not feeling well so we go by her nonverbal cues. Additionally, Aleina has nephews around her age (yes- nephews) so their ability to interact and bond is affected by her symptoms, treatment, etc, especially during this time of COVID. Lastly, of course financially as we are using FMLA to provide care. Since Aleina was diagnosed shortly after being born, most of my annual leave was depleted, and having to start over often means unpaid leave and having to decide which parent gets to be the “support” on any given day. Ideally, we would both like to attend treatment and appointments but are unable to due to financial obligations.
Cancer certainly makes you re-examine life and what is important. Things that seemed so major before, pale in comparison to watching your child literally fight to live! Having to use such harsh chemicals as a treatment model is also devastating, however, this journey has only strengthened our family. Though our faith sustains us, we are also human and in that humanness, we have cried more, laughed more, and just cherished the moments a little more.
