Age 8 months
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 in August. After completing 3 tough rounds we received MIRACULOUS news in November that the tumor could no longer be seen on MRI. In fact his oncologist used the word gone! We are so thankful to God for watching over Leo and giving us hope!
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 with stem cell transplant. It is part of the ACNS003 protocol which has been one of the most promising for kids with this type of tumor.
Leo is currently inpatient doing well in the first of these 3 high dose cycles. As we wait patiently for his counts to go up.... we also pray constantly for him to stay free from any complications, infections, or damage from this intense chemotherapy.
All being well with chemotherapy, a cure for ATRT is not usually secured without radiation. So Leo’s team is recommending radiation immediately after completing treatment. Radiation is not usually recommended before age 3 and almost never before a year. We are taking one day at a time and hoping that God will show us the way and help us see clearly the right path moving forward.
Leo = Love
Leo=Love is about a tiny boy who is loved more than cancer can ever be hated.