Leo

Leo was delivered via c-section at 36 weeks after a routine ultrasound showed obstructive hydrocephalus. He had a VP shunt placed when he was just 3 days old.

From his very first breath, Leo has been full of spunk and personality. He has always been incredibly sweet-natured, very social, charming, and cuddly. He also has always had strong opinions. His ability to communicate, even as an infant, was what clued his parents into the fact that something still wasn’t quite right.

After a series of MRIs and NICU/PICU stays, Leo was diagnosed with an aggressive Atypical Teratoid/Rhabdoid Tumor (ATRT) in August when he was 3 months old.

He started an intense induction chemotherapy regimen that August. After completing 3 tough rounds, he and his family received MIRACULOUS news in November that the tumor could no longer be seen on MRI. In fact, his oncologist used the word ‘gone’! Leo’s family is so thankful to God for watching over and healing Leo!

Because ATRT is very sneaky and likes to come back, Leo’s team at Children’s Hospital Colorado recommended that he still complete the planned 3 rounds of High Dose Consolidation chemo but only completed 2 due to some concerns for pulmonary hypertension.

Because of Leo’s age, the fact that he has the SMARCB1 mutation associated with Rhabdoid Tumor Predisposition Syndrome, and the location of his tumor, all opinions favored radiation to try to secure Leo’s NED status. He and his family traveled to Seattle for Proton beam radiation therapy.

A month after they returned to Denver, an area of radiation-induced injury was found on Leo’s brain stem, which explained his extreme nausea and irritability. He was treated successfully with steroids and Avastin.

Leo has had clear scans for over a year now and his family is so thankful for the joy he has brought to their life.

Leo loves to play with cars, his sister, his doggie, and love love loves to be chased. He enjoys watching Daniel Tiger and requests it by saying “Dan Dan”. He is trying new words all the time and just started taking steps independently. He wakes up at 4-5 o’clock every morning and is ready to play. He is an inspiration.

Please pray for Leo that all of his tests and scans will continue to be clear. He has his first visit with the multidisciplinary clinic in April which is a big milestone for kids fighting cancer. He will also have his next MRI at that appointment.

Please donate to research for childhood cancer. It’s vital that we find better, less toxic treatments for our babies and kids.

Thanks so much for taking the time to read Leo’s story.

Leo=Love

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