Harlan's Story

On December 11, 2010, our lives were blessed beyond measure with the birth of our dear sweet Harlan. Harlan was a wonderful baby. Always grinning, always giggling. He had these amazing piercing blue eyes that seemed to smile at your soul. Harlan was always right on target with everything. He never missed a milestone. He was so brilliant at every age, doing things that would completely awe struck any audience.

It was shortly after Harlan’s 2nd birthday that things began to change. Harlan started to have uncontrollable outbursts and unexplained fits of rage. Like with any toddler, it was chalked up to the terrible twos, and with it "time outs" were introduced.

Middle of January 2013, Harlan started to experience extreme, unpredictable vomiting. After several attempts to remedy the symptoms, it was decided to take Harlan to the hospital for admission. Harlan had stopped walking independently and had lost nearly 3 ½ pounds in 3 weeks. After being inpatient for over a week, our world came crashing down. February 7, 2013, "There is a mass." Four words we never imagined hearing, especially when referring to our energetic, spirited, 2-year-old son, Harlan.

“There is a mass.” Four words we never
imagined hearing, especially when referring to our energetic, spirited,
2-year-old son, Harlan.

It wasn't until a week later that Harlan was scheduled for surgery to remove the plum-sized tumor that was dubbed, "the beast." On February 13th Harlan underwent his first craniotomy to remove the tumor that had planted itself in the posterior fossa/fourth ventricle of his brain. We were prepared for a potential 8-plus hour procedure, and after only 3 hours it was confirmed that the tumor had been completely removed. Harlan’s neurosurgeon warned us that Harlan was at risk of developing Posterior Fossa Syndrome. He said that Harlan had every variable indicating he could get the syndrome after surgery, but there was no way of knowing if he actually would or not. The first 48-72 hours post-surgery were going to be the most crucial for Harlan. If Harlan did, in fact, develop the syndrome he may require a feeding tube, tracheotomy or other forms of assistance with motor skills. By the grace of God, Harlan recovered remarkably, and to the astonishment of many doctors and nurses, he was taken off of the ventilator and woken from his drug-induced sleep less than 24 hours after his surgery.  Only two days after surgery Harlan moved out of the PICU. Five days later the pathology report revealed that Harlan did, in fact, have cancer; grade II Ependymoma. One week post-surgery, Harlan was discharged from the hospital.

It was recommended that Harlan undergo Proton Beam Radiation Therapy. Those treatments began on March 18th in Bloomington, Indiana. Harlan endured 33 treatments while sedated at Indiana University Proton Beam Center. After eight weeks in Indiana, Harlan's treatments were completed, and we were able to return home to South Carolina. Harlan's treatment protocol was set, and one month after the radiation his 4-month realm of chemotherapy would begin. On June 3rd Harlan started his hardcore inpatient chemotherapy treatments. On August 14th Harlan completed his chemotherapy ahead of schedule. Once again, Harlan surprised the doctors and nurses, this time with how well he tolerated the chemotherapy treatments.

On September 5th Harlan had his post-chemotherapy MRI. Unfortunately, the results of the MRI showed four small "spots" in Harlan’s ventricles and one larger "spot" in his brain stem. We were beyond devastated. A loss for words doesn't even do justice for the shock that we had. The following day Harlan had a spinal tap conducted that thankfully tested negative for cancer cells. The doctors were somewhat speechless and clueless as to what the "spots" were. Harlan immediately started taking high-dose steroids in hopes that the "spots" were due to chemotherapy and radiation therapy. In November it was confirmed through MRI that the "spots" had grown in size and deemed new lesions. On November 19th Harlan underwent his second craniotomy. Harlan bounced back like always and was back to his lively, happy, intelligent self within a matter of days. That December we unknowingly celebrated Harlan’s last birthday and Christmas on this earth.

Harlan bounced back like always and was back to his lively,
happy, intelligent self within a matter of days. That December we unknowingly celebrated Harlan’s last
birthday and Christmas on this earth.

January 11, 2014, we heading back to Bloomington, Indiana for Harlan to begin another round of proton beam radiation. This time Harlan would have full brain and spinal radiation in an effort to stop any further progression of active lesions and to hopefully eliminate any future developments. Overall Harlan did terrific; great attitude, positive energy and loved going to the mall to walk around after treatments. Two treatments shy of completing his 33 cranial/spinal therapies, Harlan began to experience balance issues. Harlan’s radiation oncologist decided that high-dose steroids were needed due to swelling issues taking place in the brain thanks to all the radiation that had been administered. Harlan finished his treatments and on March 4th, and we loaded up and headed back to South Carolina for the second time. Within two weeks of being home, Harlan started to act differently. He was still on very high dose steroids and had recently begun to have issues walking and slower cognitive skills. March 29th Harlan became lethargic. Unsure what was going on, we rushed Harlan to the hospital. It was then that Harlan was diagnosed with severe somnolence syndrome. As a result, Harlan slept for 23 out of 24 hours every day for over a week. As a result of the syndrome, radiation, and being cortisol intolerant, Harlan was never able to come off of the steroids and never again did he walk.

From April to October Harlan struggled to express himself verbally. He never was able to play independently and developed a wickedly cruel case of PTSD. In that brief but exaggerated four months, Harlan underwent six infusions of Avastin in hopes to stop any further damage done by the extra doses of proton beam radiation. During that time Harlan gained excessive amounts of weight and went from
37lbs to nearly 55lbs. In August Harlan’s doctors were able to successfully take him off the high-dose steroids and replace them with a more tolerable one. That enabled Harlan to lose some of the overwhelming fluid weight. In July Harlan began extensive physical, occupational, and speech therapy. Everyone was hopeful he would persevere like he always had and he was making significant strides just to do that. In September Harlan was able to go on his Make-A-Wish Trip to sunny California to meet the cast of Pixar Cars. Overall Harlan had a wonderful time but was confined to a stroller, unable to walk, and at more times than not, his severe PTSD would kick in and make it near impossible for him to enjoy his surroundings.

Upon returning from the Make-A-Wish Trip, Harlan was sedated for yet another MRI. In the few weeks before this scan, Harlan had started to excel by leaps and bounds in his therapy. He was determined more than ever to get back to doing the things he so remembered and longed to do. It was on this MRI that our absolute worst nightmare was confirmed. Harlan’s lesions had spread and were on a rampage throughout his entire brain. Harlan’s oncologist prepared us for the worst; Harlan had 3 to 6 months left on this earth. Emotions were everywhere. For selfish reasons, we were devastated. For Harlan we were strong. He had no understanding or clue what was happening. It was our job to keep it that way.

Four words we never imagined, “There is a mass” have forever changed our world.

For six weeks we made sure that Harlan played as much as he could with his trains, watched his favorite movies, and enjoyed the simple things as much as he possibly could. We painted, visited the zoo, went to the pumpkin patch, and insured that Harlan got at least one last ride in on Poppie's tractor; we did anything that he would tolerate. Things were hard. Trying to complete these tasks was much more different than doing them with a healthy, completely mobile almost 4-year-old. Harlan was utterly dependent on everyone else. Not because he wanted to be because he had no choice but to be.

On October 25, 2014, Harlan was finally set free and able to become the child he was destined to be, by gaining his perfect "kind blue" wings and leaving his innocent, tortured body. For nearly two years Harlan battled a rage against “the beast” and fought harder than most adults do just to be present on this earth.

Four words we never imagined, "There is a mass" have forever changed our world. Despite all that has happened we still recognize our blessings, a little more now than we did before. Harlan’s passing will never become easy. We will never forget him, nor do we ever want to. Harlan will forever be the Hero, and because of him and his courageous battle, we will continue the fight in his honor as Harlan’s Heroes. - written by Harlan's Mommy