Most of us will never feel the pain of losing a child to a dreaded disease. We assume that the natural order within the universe decrees that a parent should not outlive their 4-year old child. Although, small in number children die before their time every day!
That stark reality became Erin and Matt Tietjen’s nightmare when they were told that their beautiful 4-year old daughter Lena would never see her 5th birthday. Even more freighting was the fact that their daughter wasn’t born with a debilitating birth defect, nor that there was any indication that anything was wrong. Little Lena was a healthy child, actively romping and playing like most children her age.
Soon after turning 4-years old, little Lena became ill. Doctors examined her and diagnosed her illness as nothing more than a typical childhood stomach virus, probably picked-up while playing with another child. A prescribed medication by the family pediatrician would have little Lena romping and playing once again.
However, instead of getting better with the medication Lena was actually getting worse. Her motor functions suddenly became impaired, especially on the right side of her body. Simple tasks like holding a crayon became extremely difficult.
Believing she was in her last days, her parents Erin and Matt Tietjen embarked on a last-minute trip to Disney World with Lena and her twin brother, Clark, to fulfill her final wish. https://t.co/D6tRqMycmJ— News4JAX (@wjxt4) July 6, 2018
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Terrified by the sudden change, Lena’s parents immediately rushed their daughter to the emergency room. Doctors in the ER quickly evaluated her condition, recommending that Lena be transferred to Children’s Hospital of Philadelphia.
Within hours at arriving at the hospital, Erin and Matt Tietjen’s world crumbled. A CAT-scan had reveled a mass embedded deep within little Lena’s brain. She underwent surgery to drain some fluid and alleviate the pressure that had built up within her skull.
Her biopsy revealed the worst case imaginable. Lena’s mass turned out to be a malignant tumor with its location making it inoperable.
“It’s the worst moment of your life,” dad Matt Tietjen said. “She’s so innocent. Your main job as a parent is to keep your child safe and this was completely out of our control.”
The grim news got even worse for the New Jersey family as Lena’s doctors estimated even with aggressive treatment the child would perhaps survive another 12-months at best.
The heartbreaking news had solidified their desire to make their daughter’s last year as joyful as possible.
First, they focused on Lena’s love of reading. After Erin’s sister mentioned Lena’s passion for books on the GoFundMe page set up for the family deliveries started pouring in for the brave young girl.
Second, Lena’s wish to go to Disney World in Orlando Florida, even though it would postpone rigorous radiation therapy for about a week. A last-minute trip to Disney World before Lena began treatment (doctors agreed), would be a worthwhile vacation for a dying girl’s final wish.
Little did they know that God had other plans awaiting them in Orlando.
The rushed vacation, although hastily arranged proved to be a much needed emotional break for the entire family. There were some truly happy moments in Disney World for the sick little girl.
However, on the last day of their vacation little Lena’s fragile condition began to deteriorate rapidly. Moreover, with no time to fly back to Children’s Hospital in Philadelphia the terrified parents rushed their daughter to Arnold Palmer Hospital for emergency surgery.
That’s when divine intervention finally revealed itself. At the hospital, the Tietjens met Dr. Samer Elbabaa. He was the pediatric neurosurgeon who would be operating on Lena. He informed Erin and Matt of a miraculous change in their daughter’s condition.
Originally, doctors deemed Lena’s tumor inoperable because of where it was in her brain. However, the tumor had moved!
“He had told us that because of where the tumor had shifted to, that it probably was something where he could get in and operate. His estimate initially was 50 to 70 percent of the total tumor could possibly be removed,” Matt Tietjen said.
However, divine intervention had yet another miracle to perform aside from moving the tumor through the skilled hands of Dr. Elbabaa who was able to remove over 90% of the cancerous mass.
A year later 5-year old Lena Tietjen enjoyed her second trip to Disney World in Orlando to once again thank Dr. Elbabaa.