The Kiah Foundation was founded in December 2010 in honor of Makiah Bartsch. This is not Makiah's complete life story; it is much too small a place to contain the life of a child. These are pieces of her life that gave rise in our hearts to create a Foundation in her honor. To those who know this battle intimately, we pray this brings you strength and hope knowing that there are strangers still fighting for cures to save your child.
Makiah was diagnosed with hepatoblastoma, a rare childhood liver tumor, at age 4 in November of 2009. In September 2009, Makiah began experiencing severe stomach pain. She was still eating and drinking normally and had no flu or cold symptoms, but constantly complained that her tummy hurt. In October, Makiah fell out of bed and, though we did not know it at the time, this fall caused the tumor to perforate. From that time on, Makiah began spiking fevers of 102-105 and became extremely fatigued, weepy and emotional. This was such a drastic change in behavior for our even tempered, joyful little girl.
Makiah was the type of child that enjoyed absolutely everything in life with immense pleasure. She could be riding in a car and would smile widely watching the beauty outside her window. She made friends easily, exuded confidence and was absolutely fearless. It never seemed to matter if she was playing in the dirt with her big brother or getting makeovers by her older cousins, Makiah giggled constantly and her eyes had a twinkle of excitement that never seemed to fade. She enjoyed playing with other children, but was also content to play on her own- always talking to her toys or singing some made up song. Makiah was one of those kids who seemed to know what she wanted in life at such a young age.
We made several trips to the Doctor resulting in a variety of diagnoses. Finally, on a Wednesday afternoon, an Urgent Care Doctor took one look at her greenish skin tone and severely chapped lips and knew tests needed to be run. For a short, and, thinking back, blissful time, we thought Makiah's appendix was the problem. Blood tests were run on November 4, 2009 showing an elevated white blood cell count (meaning infection), dehydration and internal bleeding. We were immediately sent to the hospital for further testing. An x-ray showed a large area in her liver that was initially described as a "puss pocket that would probably need to be drained". Makiah was admitted to her hometown hospital in Helena, Montana at 2am with the bombshell that it could be a tumor. Cancer. One of the scariest word any parent will ever face.
On November 5, 2009, Makiah was flown via a medflight to Spokane, WA where she endured many more blood draws and IV pain meds. Verification that she did, in fact, have a liver tumor was on the list of overwhelming information being handed out. We would spend the next 7 months in Washington state, 2 more months in Salt Lake City, UT and finally arrive back home to Montana, where we lived the last 3 agonizing weeks of our precious baby girl's life.
November 2009 was only the beginning of a life changing situation for our family. After only days had passed it felt as if anything "normal" had been a lifetime ago. Life at a hospital, hundreds of miles from home, became our new normal. Living out of suitcases and Ronald McDonald rooms, spending hours a day at clinic even when the rare opportunities of being "outpatient" presented themselves. Soon, finding family time became rare and immunocompromised became a word that dominated plans. Over the course of 10 months, Makiah spent EVERY holiday, EVERY family birthday, including her own 5th birthday, at the hospital. Her best friends were now nurses, doctors, childlife staff, physical therapists and the staff at the Ronald McDonald House. Nearly all the people in her life were adults. She was able to make a few friends with other children fighting for their lives. These relationships were like roller coaster rides- only able to grow and mature when vomiting, bloody noses and surgeries didn't get in the way.
Makiah endured 7 rounds of chemotherapy, 6 surgeries, including a liver transplant given by her Daddy, pages of medicines, countless transfusions, feeding tubes of every kind, hair loss, permanent hearing loss and nerve damage.... the list of horrors goes on and on. Makiah relapsed twice. Makiah was stage 3 and the prognosis was quite positive. Unfortunately, the cancer in Makiah's little body was even more aggressive than "normal". It moved quickly, became immune to chemotherapy drugs and was a vicious beast that seemed to have a life of its own. Hepatoblastoma effects 1in 1 million children in the United States each year. There are 4 stages of the disease and it is considered extremely aggressive. Of these 1 in 1 million children, only 2% go on to need a liver transplant. Those numbers equate to 200 children in the United States each year with about 4 of these children needing a liver transplant. Out of 200 children, the survival rate for hepatoblastoma is only 25%... that means 150 children each year in the United States die from this dreaded disease. The children who survive will live a life of complications due to the effects of chemotherapy.
The chemotherapy available to children is mostly "hand me down" medications developed for adults. Children are given these adult drugs in stronger doses and, still, many children's cancers have seen little to no change in survival rates over the past decade. There are strives being made in some areas, but there is so far to go and so many diagnoses still hiding in the shadows. Our time spent fighting for our daughter's life was lived out in a constant state of fatigue, denial and sleep deprivation. The children who fought in the rooms next to us may have been fighting for weeks or years. Many of the precious ones we met died from the cancer. Other brave warriors died from the cure. Some survived, only to be back fighting months or years later. Some survive. Because of the research and the doctors, some survive. Someday, we hope to say that most survive.
Please join us for the sake of one child's "someday".