Cancer sucks, we all know it we all hate it. Leo=Love is about a tiny boy who is loved more than cancer can ever be hated.
Little Leo was delivered by c-section at 36 weeks after obstructive hydrocephalus was diagnosed on a routine ultrasound. He 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.
Leo paid a visit to the NICU at 3 weeks old due to oxygen desaturations, excessive sleepiness and poor eating. He was almost discharged several times but just as the docs were getting the paperwork ready, something would happen before their eyes to make them dig a bit deeper into his symptoms. After a 6 day stay, with sleep studies, EEG, EKG’s, and many other tests, the neurosurgery team looked closer at the MRI from the day Leo was born. The lead radiologist noticed a shadow which they believed was a tumor and the cause of Leos’ hydrocephalus. The area was imaged once again and the shadow was now bright white, which meant Leo had some bleeding in his brain.
After two more MRI’s the blood had absorbed enough for a posterior fossa tumor to be seen. It had grown significantly so the team recommended a biopsy as soon as possible. Because of the tumor location deep in the brain, Leo had an invasive craniotomy to obtain a sample so the team could move forward with the best treatment recommendations. Leo endured a great deal of discomfort after the procedure. Unfortunately, his tumor had bled again. To add to the despair and disappointment of his loved ones, the sample collected in the biopsy did not contain any tumor. His team recommended a few doses of “band-aid” chemo, while they waited for genetic testing to come back. In a meeting with Leo’s oncologist, Pete and Megan received the devastating news that Leo has the SMARCB1 mutation associated with Atypical Territoid/Rhaboid Tumors. Leo was diagnosed with ATRT on August 20th.
After his diagnosis he started an intense induction chemotherapy regiment called ACNS001. He completed 3 tough rounds and recovered each day from surgery. 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 were hoping to get news of nice shrinkage or no growth, but these results exceeded our wildest dreams. Leo did not have to have the second surgery his family was dreading. 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 of his age with this type of tumor.
Leo is currently inpatient doing well in the second 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. At present, Leo would receive focal radiation in Seattle at 9 months. 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.
No words can encapsulate how hard this last year has been for Leo. For Sky. For us as parents and husband and wife. For our families. And yet we are overcome by gratitude so often.
We are so thankful for Leo and Sky and each other. We are so thankful that all of the treatment (and subsequent side effects that his little body has endured) has had such big payoffs so far. We are so thankful for our team of doctors and nurses who work so hard to manage every aspect of Leo’s care. We are so thankful for every single thought, word, and every type of support and encouragement that has been sent our way throughout this journey. We truly believe that we have been carried by this wide net of people who are following Leo’s story and praying faithfully for love, light, and healing for Leo.
Life is beautiful even in tough times. There are so many things(people!) to be thankful for each day if you can allow yourself to see them.
If a tiny boy who has faced challenges every single day of his life can smile and look at the world with love. So can we.
Hearts are full today. Leo is 2 years out from diagnosis and yesterday had a clear scan!!!
Lately each day has been progress in the form of new words or skills or comprehension. Brain surgeries, radiation, awful chemotherapy almost the instant he was born and yet I am amazed at what he can do and his determined spirit.
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