Liam is a lover, fighter, and protector. A couple of months after turning two, Liam was diagnosed with hepatoblastoma (liver cancer), thrusting us into a six-month whirlwind journey of active treatment/interventions and into a lifelong journey of navigating the secondary ramifications of it all.  Three rounds of chemo shrunk the 12cm tumor, but only enough to reveal it was inoperable due to its proximity to major blood vessels.  Roughly 36 hours after his name was activated on the transplant waitlist, a liver was offered and transplanted, and chemo resumed 18 days later.  Complications were aplenty—during active treatment included numerous episodes of neutropenic fever (a life-threatening medical emergency), multiple blood and platelet transfusions, severe protein-calorie malnutrition, seemingly constant bouts of nausea/vomiting, physical deconditioning, hypertension, and peripheral neuropathy (he essentially lost the ability to walk and needed a baby walker or chose instead to crawl), and after active treatment included a blod clot in the right atrium of his heart, dangerously high potassium levels from his anti-rejection medication (an automatic PICU admission), a fever of unknown origin that lasted 5 days and required almost more specialist consults than we have fingers, pneumonia, and countless infections (bacterial and viral)—most of which required an ED visit, if not a full-blown admission.  Additionally, his moderate to severe sensorineural hearing loss (for which he wears hearing aids), developmental delay (believed to be related to age of illness), behavioral struggles (besides those typical for an ADHD kiddo and typical child in general, he’s aggressively friendly and fiercely protective of humans and animals/living creatures, alike, so boundaries and social skills are not always appropriate for a given situation), speech delay (that started before his cancer diagnosis but was likely worsened by the subsequent hearing loss), and toe-walking (which got so bad, he had hamstring tightness/pain and lost range of motion in his ankles and feet, and is now on his third set of AFOs, or custom orthotics that are specifically molded to his feet and provides a stretch with every step taken while attempting to retrain his brain to walk heel-to-toe instead of on his toes), among other things, means he continues to keep a lengthy list of specialists and rehab interventions on the forefront.

AAU has been invaluable to our family from the moment we learned of their existence.  Although the peak of the 2020 coronavirus pandemic had passed by Liam’s diagnosis in August, and Nebraska was reopening its doors to the public, hospitals were understandably unable to follow suit to keep all workers and patients as safe as possible. Unfortunately, that meant that while siblings and family members are normally encouraged to spend time on the oncology floor with their cancer warrior, siblings were not allowed at all, and only one parent or guardian was allowed in the hospital with the patient at one time.  Liam often spiked fevers in the middle of the night, which meant that his big sister, Kaia, would wake up to find her life upended since Mom and Liam were both gone, never knowing how long it would be until we would see each other again, since it could be hours or days until it was deemed safe for Liam to return home.  (This also meant that Dad would have to leave work to stay with Kaia if he was on shift at the time.)  

AAU not only helped ease the financial burden of an already financially taxing time in our lives (which was further compounded by additional constraints due to COVID-19), but they generously included Kaia (and Mom and Dad) when they arranged for Santa Claus and the Grinch themselves to deliver two huge plastic totes full of Christmas gifts to our door!   Even now that Liam is done with active treatment, AAU continues to bless us with their monthly newsletter that reminds us of our access to their new Harper Hope Center and all the support they have available or will find for us. Most notably, Liam’s big sister is able to feel loved and appreciated, along with Liam, since being the sibling of a medically fragile child isn’t always recognized for the altered life journey they get thrown into, too, even if they aren’t the “sick” ones. The passes to the Luminarium, Henry Dooley Zoo, and the SAC Museum have been priceless since it often enables Kaia to invite friends along, too, and it also helps Liam practice the social skills he lost out on when he was sick. Our family is forever grateful for the love and support AAU has and continues to provide to us and the community as a whole!