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.
Cason was diagnosed with Rhabdomyosarcoma in August of 2019. He was experiencing many issues with going to the bathroom and his stomach was very distended when we took him to the ER.
He had to have his bladder, prostate, and part of his rectum removed because of radiation damage. He now has two ostomies which present some issues with the quality of life.
Cason endured almost 18 months of chemotherapy, over 30 proton radiation therapies, and a tumor resection surgery. Cason struggles with side effects of his treatment including his ostomy bags and kidney issues.
Through it all, Cason is wild and full of life! He loves to laugh and is super active. He loves to be outside playing with rocks and loves every kind of truck. He is such a fun kid to be around and almost always has a smile on his face.
Garrett was out of state in his 2nd year at college and in February of 2019, he had as toothache bothering him. I encouraged him to find a dentist to have it looked at. The dentist did a root canal, but the pain and swelling didn’t go away. Two rounds of antibiotics didn’t help either.
We got a second opinion and they said something was not right. He ended up seeing an endodontist that sent him to ER/hospital. He had an emergency sinus surgery that unveiled a mass, so a biopsy was taken. The cancer was diagnosed days later and confirmed by Harvard a week after that.
Two days after the surgery, we packed up his college room in 5 suitcases and flew home to Seattle to find an oncology team to help us battle this 1% of all cancers. On April 10th, we started chemotherapy after aborting a scheduled surgery because the tumor had grown so much in 3 weeks. It was obstructing his breathing and moving his facial structure. His chemo map was for a 43-week protocol with 7-week radiation.
We will never be able to let our guard down. Every sneeze, cough, bump lump, bruise, blurry vision, and pain will be a reminder that he got cancer and it can come back anytime and anywhere.
Young adults with cancer are stuck in a place where they are legally adults and pushed out of pediatric and scholarship programs, yet they are too young, innocent, and inexperienced with themselves and the world to know how to navigate their own emotions, environment, and advocate for themselves
We are a close family with a strong religious network, but cancer is not a friend too many know how to sit with. We end up sticking together most of the time because so many people don’t know how to navigate cancer with us.
Taylor was diagnosed with Rhabdomyosarcoma in February of 2020. Then, she relapsed in February of 2021. There were absolutely no odd symptoms. She has always been super healthy and was never sick as a baby or younger child. I noticed a lump on her hand in January 2020 and now we are here.
Taylor has had a tumor resection in her hand, chest port put in, a biopsy of a new tumor in cheek, radiation to hand, quite a few MRIs, PETs, and CT scans. This year, she has had hospital stays because the new chemo is more aggressive.
Everything is centered around Taylor right now and has been for over a year. I try to keep things as normal as possible, but that went out the window with Covid. That changed our lives as well. Having to chose one parent to stay with a child during chemo was unfair to that child.
Veda is so strong and I am in awe of her every day.
