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Leo

Age 4

Original Story Shared March 4, 2022


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 had his first visit with the multidisciplinary clinic in April (2022) which is a big milestone for kids fighting cancer. 


June 1, 2023 Update - Leo's 3rd Birthday: 

  • Leo has been doing amazingly well considering what he went through at such a young age. He is incredibly happy and inquisitive, and has such a fun personality. He’s got tons of energy and is very ready to start preschool in August.

  • Leo loves to play with cars, lining them up is his newfound passion. He loves to be outside and goes on his little rollercoaster 50 times a day. He gets lots of joy out of watching it crash or crashing into things.

  • He is sweet natured and loving and gives spontaneous cuddles and kisses in between creating mischief. Leo also loves to look in the mirror, especially when he’s wearing a fun hat or is being silly.

  • Leo has had a couple of setbacks with seizures that started after his 2nd birthday, but he has been responding well to his seizure medication. He had a clear scan again in May after a new round of seizures had his family worried. He will continue with quarterly MRI’s and we are all hoping/praying/believing they will continue to be clear!


June 1, 2024 Update - Leo's 4th Birthday: 

Unfortunately, a malignant rhabdoid tumor (MRT) was discovered on Leo's right kidney in February. Since then, he has been undergoing chemotherapy and had resection and radiation treatment immediately following the diagnosis.


He has been such a strong and brave boy. He completed his fourth round of chemotherapy about four weeks ago, and his family has decided to cease chemotherapy.

We are all hopeful that the treatments he has received will be sufficient to keep the cancer at bay and allow him to enjoy a good quality of life.



You can also follow Leo’s site to stay updated on his ATRT journey: https://www.caringbridge.org/visit/leoequalslove


#leoequalslove

Leo = Love

Leo = Love is about a tiny boy who is loved more than cancer can ever be hated.

Leo
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