Roman ’s Story

Site created on April 23, 2018

 Days before his 6th birthday, Roman was diagnosed with osteosarcoma in his femur--a type of bone cancer extremely rare in children under the age of five. Confused about terms like cancer and chemotherapy, Roman calls his cancer "boogers" and knows they need to be treated at the hospital to go away.  Hence, the name of this site...with your help we can BEAT THE BOOGERS!

Roman's prognosis is promising, and the Ventura's have brought in a team of medical superheroes to help fight the boogers.  No longer able to walk, Roman had to leave Kindergarten and begin treatment immediately at Kaiser Permanente Santa Clara Medical Center.  He is racing against the clock to isolate the spread of cancer.  The first round of chemotherapy has already begun and will be followed by five more rounds over the next eight weeks (April thru mid-June). Following chemo, Roman will undergo rotationpasty surgery (approx. beginning of July). Due to the rarity of this surgery, the operation may take place at a specialized hospital in another state.  After a four-week recover from surgery (July - early August), Roman will have another 12 rounds of chemotherapy for 17 weeks (August thru December). Once recovered from chemotherapy, Roman will start physical therapy to learn to use his new prosthetic leg, thus completing an excruciating year-long battle of a 6-year-old boy and his family to BEAT THE BOOGERS!!

Link for rotationplasty - http://www.danafarberbostonchildrens.org/why-choose-us/expertise/surgery/rotationplasty.aspx (https://nam01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.danafarberbostonchildrens.org%2Fwhy-choose-us%2Fexpertise%2Fsurgery%2Frotationplasty.aspx&data=02%7C01%7C%7Cc83413668b0b452e3ef108d5ab0e4ac9%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C636603000224307036&sdata=SHoMmevuQiZyIi2zkiXsfVt5uxFQQp259JhYmY1bbo4%3D&reserved=0)

Tatyana (Roman's mom) is on indefinite leave from her full-time job in tech to care for him. She is also (unexpectedly but excitedly) pregnant with their 3rd child, due in December. As a type 1 diabetic, Tatyana's pregnancies are considered high-risk and require a lot of medical attention. It will impede the amount of physical assistance she can give Roman.

Anthony (Roman's dad) will stay at his full-time job as a Medical Physicist, working in the Kaiser Permanente Cancer Treatment Center - the same hospital in which Roman receives his chemotherapy treatments! Anthony will be by Roman's side as much as possible during his hospital stays. 

Nikolai (Roman's big brother) has been patient and understanding as he tries to understand what is going on and continues to find ways to be helpful at home. He loves his brother dearly and is a natural caretaker. But he's feeling a bit lost. 

During this extremely trying time, the Ventura' family needs to lean on our loving, supportive community for help.  Right now, the family is living moment to moment and cannot foresee what or how help will be needed.  Please continue to check this site for updates. Tasks and areas of support will be added when they can wrap their heads around this new world they have entered. 

On behalf of the Ventura family, thank you for being here for them. 

 

Newest Update

Journal entry by Lori McCormick

I have been staying in constant contact with the Ventura family and while they don't have much downtime to call or respond to your messages, they are appreciative of your love and support. Juggling the boy's schedules can be exhausting - we can relate, everyone is busy! They are trying their best to keep Nikolai's schedule as normal as possible (he loves his soccer team and dance so that is a huge priority!) while balancing Roman's hospital visits. Needless to say, we have two very tired parents! They are strong though, and your notes of encouragement keep them going! Tatyana sent me a picture of Roman the other day in the hospital. There is a spark in his eye that is fierce. He is a fighter! The staff at the hospital have fallen head over heels for him (how could they not?!) and cheer him on throughout the day. Kaiser has been incredibly responsive to Tatyana and Anthony. They are in good hands. Please continue to send your messages - they are reading them and really do appreciate each and every one of you!

Many of you keep asking me how can you help? I keep asking Tatyana that same question. At this point, raising funds on the GoFundMe page and sending gift cards from Munchery or GrubHub gives them the flexibility to use the GFM funds when they need it for home health care or cash in a food delivery gift card when meal planning seems too exhausting (especially on those nights they get home from the hospital late in the evening). There is a tab on this website titled Ways to Help. On the top far right is a box with the meal delivery and GoFundMe information. 
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