My husband and I both prayed for Jackson before I was even pregnant with him. There has always been so much joy surrounding him. He was born by surprise in our own bathtub, where my husband and I caught him all alone. I feel like that set the tone for his life. He defies convention. He is loved by so many people; not a week goes by without someone telling me that they or their children pray for Jackson every day. We feel so blessed to know him, it’s like we’ve been entrusted with something very precious and rare.
Jackson is insatiably curious. It’s as if he knows how much he’s missed out on and he is driven to catch up on all of it. He consistently proves the professionals wrong and laughs in the face of any dire prognosis. He never likes to be still, always finding something to do. He loves to use sign language and communicate with us. His whole face lights up when we respond to him. He loves kitchen utensils almost as much as he loves food — and that’s a lot!
Last fall he was not feeling well and was experiencing daily vomiting, torticollis, developmental delays, loss of gross motor skills, hydrocephalus, and obvious swelling in his head. He was diagnosed with Choroid Plexus Carcinoma. Choroid Plexus tumors form in the brain in the cerebrospinal fluid. There are non cancerous (papilloma) and cancerous (carcinoma).
Jackson has had six rounds of inpatient chemotherapy and one autologous bone marrow transplant. After the BMT and during the last round of chemo, Jackson suffered a blood infection and septic shock that landed him in the ICU. He spent five weeks sedated and on a ventilator. During that time, he also suffered through two respiratory viruses, all while battling low blood counts and lesions on his skin from the chemotherapy.
Six rounds of inpatient chemotherapy at UCLA Mattel Children’s Hospital, one autologous bone marrow transplant. After the BMT during the last round of chemo, Jackson suffered a blood infection and septic shock that landed him in the ICU, where he spent five weeks sedated and on a ventilator. During that time, he also suffered through two respiratory viruses, all while battling low blood counts and lesions on his skin from the chemotherapy. Now that Jackson is out of treatment, he and Todd have bonded all over again. They love each other deeply and Todd is very protective.
He has blown us away with his resilience. When we brought him home from treatment, he couldn’t sit up on his own, he was silent, he ended up needing a feeding tube because he dropped a terrible amount of weight, he was barely rolling over, and he didn’t seem to comprehend anything we said to him. Now he is up on his feet and even trying to climb our stairs. He babbles incessantly, says Mama and Dada, eats like a teenager, uses sign language, and never has an idle moment. It’s miraculous!
Hope session by Melinda Roth Photography.
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