We have always remarked that our family was destined to be. We met in the Army and through sheer luck, ended up in the same units through a five year tour, including more than two years together in Iraq and Afghanistan together. After leaving the Army in 2008, we returned to Colorado to raise a family. Blessed with our son Tristan in 2008 and our daughter Emma in 2010, our “plan” for our family appeared to reach completion with the birth of our third child, Jackson in 2013.
We counted our blessings and Jackson began growing into a happy and feisty baby boy. Jackson was infamous with our family and friends as the baby who gave you “stink face” if he was unhappy with you. He was the only one in a family of five that had red hair. He was the baby of the family with a big sister and brother who adored him. His sister would hug and kiss him constantly throughout the day resulting in a lot of growls of displeasure from Jackson. “Never without my permission!”, we imagined him trying to say. We used to joke that Jackson had an “old soul”. He seemed to have a comprehension of the world around him far in excess of his young age. Life was good.
In November 2014,when he was 11 months old, we took Jackson to his pediatrician over concerns that his once cute “buddah belly” appeared to be growing even larger. Jackson showed no outward signs of sickness. None. The day after we took Jackson to the Doctor, an abdominal ultrasound was performed. Within 20 minutes, our doctor called and told us, “I’m sorry, Jackson has a tumor”. Those words set into motion a whirlwind chain of events that would change our lives forever.
That day, we were sent to Children’s Hospital Colorado, where we met with the amazing staff in the Center for Cancer and Blood Disorders. Jackson was admitted that afternoon so we could begin the work of identifying what we were up against. We both stayed in the Hospital for that first week. Jackson underwent scans, a biopsy and central line placement. The scans showed that Jackson’s large primary liver tumor had already started to metastasized to his lungs. Ultimately we were give then diagnosis of Malignant Rhabdoid tumor of the liver with pulmonary metastasis. Jackson’s amazing doctor, Dr. Brian Greffe, didn’t pull any punches when delivering the news, telling us Jackson had “maybe a 10% chance” of beating the disease. We were also advised that because of the low probability of survival, we could also choose to not pursue treatment. We took a few minutes, allowed ourselves to process the news and then then told the doctor we would take any option that gave Jackson a fighting chance.
Jackson started one of the most intense chemotherapy regimens in pediatric medicine. One week in the hospital, two weeks out was the standard drill. Our lives revolved around constant lab draws, platelet counts, and obsessing about Jacksons ANC. His life, our lives, changed suddenly and have never been the same. Life for our entire family was different despite trying to keep routines. Mom stayed with Jackson every time he was in the hospital. Dad had to stay home with Tristan and Emma rather instead of going to work. In December 2014, after a few cycles of chemotherapy, Jackson had his second PET scan. We braced ourselves for bad news, as the size of Jackson’s abdomen did not appear to have decreased. The news was not what we had expected. Jackson’s primary tumor showed almost no activity on the PET scan and many of the lung nodules appeared to be shrinking. The treatment appeared to be working. On February 5th, 2015, Jackson endured a six hour surgery in which the large primary tumor was successfully removed. Our “Jack Jack” appeared to have been given a new lease on life. We allowed ourselves to believe that our miracle was actually going to happen. Because of the aggressive nature of this cancer, his course of treatment and the chaos that ruled our lives, had to continue.
In late Spring 2015, a PET scan revealed a small recurrent lesion on Jackson’s liver. The initial progress on his lung lesions also appeared to have stalled. A different combination of Chemotherapy drugs was tried, to no avail. While our doctor researched other treatment options, including a possible trial at Saint Judes, we tried to stay optimistic. Our family entered our local 4th of July parade and “Team Jackson” marched with family and friends to raise awareness of pediatric cancer. Jackson was in high spirits and seemed to be doing so well. Within 48 hours of leading his team through the parade, Jackson’s health began to deteriorate. Jackson was admitted to the hospital one last time. After several days of inconclusive tests, Jackson was sent home, though he now required supplemental oxygen at all times. At a follow-up clinic visit, Jackson’s doctor told us that because his case was so advanced, Jackson did not qualify for any clinical trials at Saint Judes. There were no other options to cure our son. In consultation with his doctor, we brought Jackson home on Hospice care on July 10th, 2015. We tried to spend every possible second with Jack Jack. We tried to prolong every moment. On July 23rd, Jackson died at home, with his Father, Mother, brother, sister, aunts and grandparents by his side.
Jackson was the baby in our immediate family; the second grandson on both sides of our families. The first Jackson, the only ginger and our Hero. Throughout a brutal course of treatment that would have brought most adults to their knees, he was such an amaing happy boy. He was a warrior.
