Leo was born with obstructive hydrocephalus and had a VP shunt placed on his 3rd day of life. From his very first breath he 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 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 MIRACULOUS news in November that the tumor could no longer be seen on MRI. In fact his oncologist used the word gone! His 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 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.
He 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’s 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.
Thanks so much for taking the time to read Leo’s story.
Leo = Love
Leo = Love is about a tiny boy who is loved more than cancer can ever be hated.