Lia, 2021 Ambassador
ABOUT LIA
Lia is a 3 year old very high risk Leukemia warrior from Omaha, NE. Some of her favorite things include baby dolls, slides, and playing doctor. She is a very loving “mommy” to all of her babies!
LIA’S PARENTS
Lia is our miracle baby that was prayed for, for many years before she was born. We thought life could not be better with our miracle young toddler until we were told the chilling and haunting four words that no parent wants to ever hear – “Your child has cancer” in October 2019, out of the blue after a week long cold that did not go away, when Lia was only 21 months old. Our lives were turned upside down and everything changed in an instant. It was our worst nightmare to think that our precious baby girl would be battling life-threatening cancer.
LIA’S JOURNEY
Lia was diagnosed with very high risk acute lymphoblastic leukemia (ALL) when her blood test showed her white blood cell count to be 187,000 (normal is around 10,000). Lia spent the first 30 days inpatient with many complications, including a blood clot, blood infection and a severe wound on her arm from the infection that required wound care. We also learned that her cancer was considered “very high risk” and has a higher chance of recurring because of the rare type of leukemia that it was (“ph like”). We also learned that her total treatment time for chemo would be 2.5 years long – which was longer than Lia had even been alive. She has now been fighting cancer for over half of her life.
LIA’S REMISSION
Lia was unfortunately in the 2% of children who did not go into remission after the first month of leukemia treatment. Luckily, she did go into remission in the following months. We found out that Lia was finally in remission on New Years Eve 2019 – what an amazing way to start the new year! Because she is such a high risk, Lia got a special targeted immunotherapy medication called Blinatumomab. The immunotherapy should hopefully teach Lia’s own body to fight cancer if it would ever come back again. Lia wore a backpack for 2 months straight while she received this special immunotherapy infusion (24/7, even sleeping while hooked up to her backpack). Her nickname was “backpack girl” during that time! 😊 She did amazing with the backpack and did not let it slow down her zest for life.
LIA’S CHEMO
Lia’s chemo was made more complicated because COVID arose only a few months after Lia’s leukemia diagnosis. This complicated everything and brought so much fear to our family, as we had to live extremely isolated in order to deep Lia safe from germs and COVID. During Lia’s treatment, our family also had its income cut almost in half, while also dealing with many medical bills due to Lia’s cancer. We are so grateful for the financial assistance that Metro Area Youth Foundation was able to give us during this time. They helped pay our mortgage payment so that we could put our focus on being with Lia and her kicking cancer’s butt!
LIA’S MAINTENANCE
Lia is now in the maintenance phase of chemo and doing better. She has been through more in her short lifetime than most adults can even fathom. Throughout her treatment, she has had 10 blood transfusions, 5 platelet transfusions, 21 lumbar puncture surgeries, 8 hospitalizations, 2 hair losses, 56 days wearing a backpack 24/7 for immunotherapy, 2 EKG tests, 1 blood infection, over 500 pokes/shots.
LIA’S PARENTS’ GRATITUDE
We are thankful for everyday with our precious Lia and have learned never to take a day with her for granted. Lia is our inspiration as she faces each day with a smile and amazing resiliency despite the challenges before her. Lia will remain on chemo until spring 2022 when we plan to have a “no mo chemo” celebration. Thank you, Metro Area Youth Foundation and donors -- for supporting metro families like ours who are battling pediatric cancer and going through the unimaginable. Your support makes a difference and brings us so much hope knowing we are not fighting alone! Thank you from the bottom of our hearts.