At 3.5 years of age, Jaxon began having seizures. The epilepsy diagnosis resulted in Jaxon having a MRI which revealed a brain tumor. Doctors believed the tumor was benign and were planning to just watch it, but the medicines were not able to get the seizures under control. On Jaxon’s worst day he had over 30 seizures, and in a 3 month period he had over 500 seizures. We prayed to God to stop the seizures, and we couldn’t understand why God wasn’t intervening. The excessive seizures forced our hand to brain surgery to remove the tumor, but we were given the devastating news that pathology showed it was malignant. We realized God had intervened by giving Jaxon the seizures to lead us to a path to get the cancer out of his body!
Jaxon’s cancer type was supratentorial primitive neuroectal tumor (sPNET), a rare and aggressive form of brain tumor. We were told the best shot at this was the 1st time, and if the cancer recurred there was no cure. We decided to move to Houston for 7 months to do an aggressive St. Jude protocol that was being implemented at Texas Children’s. Jaxon received 6 weeks of brain and spine Proton Radiation Therapy through MD Anderson in Houston. This was followed by 4 months of high dose chemotherapy at the Bone Marrow Transplant section of Texas Children’s Hospital in Houston. The treatments were so aggressive that they would wipe out his bone marrow, and Jaxon had to receive autologous stem cell transplants (his own stem cells harvested prior to treatment) at the end of each round of chemo to replenish his bone marrow.
We returned home for Christmas 2011 praying that the cancer chapter of our lives was behind us. However, 1.5 months later Jaxon’s 1st post treatment MRI revealed 2 brain tumors both already the size of the original tumor – the cancer had recurred. We called the top 5 pediatric cancer hospitals and researched some alternate therapies, but the only treatments anyone could offer were to extend his life not to cure him. Jaxon had 2 more weeks of radiation to spot treat the 2 tumor areas at MD Anderson. We decided to use the other chemo drugs that were being used on a study for recurred PNET patients, but we went off-study to be able to do the treatments at our local hospital.
June 21, 2012 the MRI showed the treatments were not working and the cancer had taken over half of Jaxon’s brain. The doctors recommended discontinuing treatment and felt Jaxon had only a few weeks to a couple of months to live. We elected to do an oral chemo as long as it didn’t interfere with Jaxon being able to enjoy life. A CT scan in early September proved the chemo wasn’t helping and showed hydrocephalus in the brain.
We risked a cross country trip that would turn out to be Jaxon’s last. We had promised to take Jaxon to see 2 really close friends out of state. The trip was such a blessing and the last time he would be able to use his legs. Unfortunately on the last day of our trip, Jaxon took a turn for the worse and had to be air ambulanced home. Hospice was started and the doctors thought it would be a matter of days. We were quickly reminded that God is the only one who knows the number of our days and Jaxon’s hospice team stopped predicting a time table for him as we watched those days turn to weeks and then months. Towards the end Jaxon was gradually became paralyzed, blind, and even lost his ability to speak, but he could still communicate by blinking his eyes. 24 hours before he died, Jaxon got a smile on his face as we did a sponge bath on his hospital bed, and when asked him if he was happy, he blinked his eyes, “Yes”.
On November 25, 2012, Jaxon took his last breath on Earth and his 1st breath in Heaven. His passing was peaceful with his parents and sister in the room. His last breath had a smile and that must have been the moment where the gates of Heaven opened for him. We prayed for our child to be miraculously healed, and although he wasn’t healed on Earth, we know Jaxon is healed in Heaven.
We are so thankful for all the miracles that God gave us throughout Jaxon’s journey. He didn’t have any lasting deficits until the last 3 months of his 2 year odyssey and even during his treatment, he still was always able to find things to make him laugh and smile. There were times where Jaxon wouldn’t be able to even sit on his own and then a few days later would be catching a fish or riding on an inner tube behind a jet ski. There were moments where Jaxon’s vision had been gone for days and then he’d see something. Jaxon’s dream was to go to Kindergarten, and in June his doctors never thought he’d live to see that day. God sent Jaxon to Kindergarten for 2 weeks and even let him experience some homework. The last 2 months of Jaxon’s life he was mostly at the house in his special chair or hospital bed, but there were 2 things that would give him enough motivation to work through the pain and get out of the house: Orange Leaf frozen yogurt and shopping for the kids at the hospital. No matter how sick Jaxon was he never gave up and instead focused on giving out to help others. We appreciate your support in helping us carry on the ministry Jaxon started to continue to give out to help other families battling childhood cancer!