Alva Toca and Jason Ross knew their child would be born with Down syndrome and awaited his arrival with joyful anticipation. While prepared for one thing, neither Alva nor Jason were prepared for an additional diagnosis of leukemia.
Within hours of his difficult birth, Jackson was whisked off to Sutter Memorial neonatal unit. His APGAR score at birth – a quick assessment of the health of a newborn on a scale from one to ten with ten being good – was one. A one. No one thought Jackson would live. A priest was called in to baptize him. The leukemia rampant throughout Jackson's tiny body affected his ability to breathe; his lungs shrunken, crowded out by an enlarged spleen and liver. His blood was chock-full with leukemic cells unable to do their jobs and not moving nutrients efficiently through his body. Alva describes it more colorfully, "Basically, Jackson had sludge for blood."
Jackson did not show a good response to the standard leukemia protocol so the specialist brought in the "heavy artillery" which was high-dose chemo and terribly difficult for an infant to survive. But Jackson did. "He's a fighter," says his mom, "and I'll do everything I can to fight for him and with him." Born in early August, Jackson went home at the end of October and was doing "pretty darn good," says Alva.
The next six years passed with an unending list of appointments with various doctors at various places for various reasons. This is life for parents with a child in cancer treatment. Finally, Alva and Jason heard the great news they had awaited so long. "I won't need to see Jackson for a year," said the oncologist. A whole year! Jackson had graduated to a more normal childhood without frequent blood tests, doctor visits or lumbar punctures. Jason and Alva thanked the doctor and as they walked to their car, tears streamed down their faces. So few people can understand the depth of such emotion as it relates to the long journey through pediatric cancer care.
Just a few weeks later, Alva noticed Jackson seemed to be limping. Alva had just had a conversation with a mom who had a child with Down syndrome who had been diagnosed with leukemia. Alva asked, "How did you know?" The mom said her child complained of leg pain. They both commented on the high degree of pain tolerance kids with Down syndrome seem to have. Afterwards, Alva wondered, "Why is Jackson limping?" Something seemed wrong. An x-ray proved normal. A moment of relief but a mother's intuition still nagged at her. Alva arranged for an additional blood test to be added to a routine blood screening. Two days later, Alva and Jason's world was jarred once again.
"It looks like Jackson has leukemia again, but this time a different type," said the pediatrician before referring them once again to the oncologist they hadn't expected to see for another year. For parents who stand guard by a child through one disease, the arrival of another is devastating. "Are you sure you have the right child, God?" cried Alva. "He has been through so much already. I will take it from him. Give it to me." But these are the choices loving parents do not get to make. Alva and Jason settled in for this new round of treatment, hopeful as always for good results. Their families stayed close by, loving and supporting in any ways they could.
Jackson or "the J-man" as he is often called, did not respond as hoped to the standard protocol therefore, a bone marrow transplant was recommended. The outlook for a marrow match was dim because Jackson is biracial, a group highly underrepresented on the national marrow registry. Since Jason works for the Kings basketball organization, the Kings family of players, broadcasters and fans supported a successful marrow registry drive. Education is sorely needed to improve minority representation on the Be The Match registry, especially for African-Americans.
The search for a marrow donor began in December, 2009 and amazingly, three potential matches were found but Jackson needed to have less disease in his body or else the transplant would not be successful. The selected donor was told to be patient as Jackson endured more chemo and radiation; received more red cells, more platelets, and more plasma. Through it all, this delightful little boy would greet his parents with a bright smile each morning. They were amazed by his strength and his resilience. He taught them about patience and perseverance and staying the course with faith and good cheer.
Jackson received his transplant on April 22, 2010 and recently met his marrow donor, Charles Nelson from Southern California. Jackson continues to get stronger and brightens the worlds of those who know him. He will go back to school this fall. Alva and Jason's gratitude for Charles' gift is beyond words. They also cannot thank blood donors enough for their generosity in supporting a small boy, a stranger, their beloved son through all his medical treatments. They encourage everyone they can to donate blood and join Be the Match marrow registry with a good-faith commitment to save the life of one who waits with hope.
Schedule a Donation
Jackson Ross (2011)
Jackson Ross with his donor, Charles Nelson
Jason, Jackson and Alva