When we think of a two year old little girl, images of pageants, ballet tutus, and barbie dolls emerge. The last vision we would expect to have would be of i.v. poles, cat scans or daily chemo treatments. For two year old, Emily Evans, this was her life.

Emily Victoria entered the world as a healthy beautiful baby girl on March 16, 2004.  Tricia, her mother, will tell you that Emily’s hair was just one of the features she first noticed, coming second only to her deep hazel eyes.

As Emily grew, she blossomed into a typical toddler. She loved Dora The Explorer, The Dooddlebops and of course, Hannah Montana. A trip to the mall with her mommy always included a pretzel and frozen coke. Those soon became an excellent bargaining tool if Emily became tired during one of their shopping excursions.

In January 2007, when Emily was just shy of her third birthday, what should have been a simple case of bronchitis developed into pneumonia. Emily’s body would not respond to the rounds of antibiotics and steroids. The infection took such a toll on her body it left her lethargic. The decision was made to transport her immediately to the Childrens Hospital via an ambulance. This was the beginning of Emily’s physical struggle and the start of Tricia’s emotional battle.

After numerous invasive diagnostic testing which included bone marrow and lung biopsies, cat scans, and daily blood draws, Emily was finally diagnosed. Her disease had a name,  Hemophagocytic Lymphohistioytosis (HLH). Emily’s treatment plan would need to be aggressive, including steroids and chemotherapy.

Patients with active HLH have too many certain cells called  histiocytes, as well as lymphocytes (another kind of infection-fighting cell), both of which are so-called white blood cells that may cause inflammation (swelling, redness, heat, pain, and loss of function). These cells then begin to penetrate and accumulate in good tissue and can cause damage to a variety of organs.

During the extensive hospital stay, Tricia left Emily’s side only once. During this brief separation, Emily coded. Fortunately Bryan, Emily’s father, was with her. Tricia is certain it was God’s grace that encouraged her to leave that morning. It prevented her from witnessing a very traumatic event that landed Emily in the ICU. Doctors deduced that Emily had a seizure derived from the chemo and steroids. She also suffered from hypertension. Remember, she is just two years old!

Emily was released March 14th, two days before Emily’s third birthday. She was sent home with a bag full of steroids, daily chemo treatments, three blood pressure medications, xantac and a yeast preventative. Tricia was given instructions for Emily’s biweekly appointments and strategies for a sterile environment. Three months later, however, Emily’s body once again refused to react to necessary medication. Emily was forced to receive her chemo treatments through i.v. which meant overnight stays in the hospital.

As a result of the HLH, Emily would need to be hospitalized again to have an enlarged lymphnode removed from her neck. This secondary condition had a name of it’s own, Kikuchi disease. The mass was the size of a small apple and entwined around the main arteries in her neck. It was a very delicate surgery. She also had problems with her eyes which required a visit to an internist and the introduction of additional steroids and chemo medication.

It is important to understand the effects of chemo and steroids on her tiny body. Emily’s clothing stopped fitting her, facial hair developed and a constant hunger plagued her. Due to Emily’s weight gain, inconsiderate people frequently approached Tricia, scolding her for feeding Emily too much. There were many times Tricia was reduced to tears in the middle of the store. As if knowing her daughter’s suffering was not enough, the hurtful and judgmental comments spiraled Tricia into a mild form of depression. She was desperate to defend Emily, but found no solace while attempting to offer explanations.

During each hospital stay, Tricia immersed herself into the bible. Late nights were spent reading by the light of Emily’s bed. Comfort was found in her favorite scripture, Phillipians 4:13, “I can do all things through Christ, because he gives me strength”. She often felt a sense of peace whenever she read it. She knew she could do anything through Christ. She was adamant that she did not want to do it, but she knew she could. Her strength would be tested again. This time, she had no idea the extent.

Tricia has been forced to live her life contingent on how Emily is feeling. One cough, one sneeze and it could be deadly. Emily’s body does not react to illness the same way a normal body would. It was evident in September 2010. Emily ran a low grade fever and had a slight cough as if she were clearing her throat. Twenty four hours later, Tricia called 911 and requested an ambulance. Emily was in complete septic shock. When they arrived at the hospital, doctors praised Tricia. Had Tricia not have been as quick thinking, Emily would have suffered cardiac arrest within minutes. Her system had enormous amounts of bacteria in the bloodstream. Since Emily’s initial onset, this was the lowest moment for Tricia.

Emily has since had speech, physical and occupational therapy. Her prognosis is at a fifty/fifty chance if she requires a bone marrow transplant. She has the infectious and not hereditary form of HLH which leaves no cure. She is also fighting another form of  HLH, sarcoid. Unfortunately, Emily will require chemotherapy treatments for the duration of her life.

While Tricia helped Emily endure testing, administered her numerous medications, and eased Emily’s discomfort that accompanies this terminal disease, she gave birth to Emily’s brother, Ben. They are currently unsure if Ben will ever contract HLH. Understandably, it is a constant worry of Tricia’s.

When Tricia could easily have planted her feet firmly in self pity, she refused. Instead, Emily initiated their spirit of giving. She has twice donated her hair for the Children With Hairloss  organization. Bryan, her father, can be seen most Saturdays at their church’s food pantry. He willingly gives time to help families who need food. Tricia aggressively utilizes coupons and other available resources in order to provide diapers, formula and other essential items to families in the community. She is also scheduled to make her first hair donation to the same organization that Emily chose. Not one time have they ever asked for a hand out, rather, they have become the ones handing out.

When you speak to Tricia, it is evident early on that she has definitely walked thru fire. She is also very quick to assure you, her walk was with Jesus. She said it wasn’t so much worrying about losing Emily to HLH, she worried more about Emily’s salvation. She knew God would help her overcome anything, but she had to ensure Emily knew Jesus Christ. Today, Emily walks with Jesus and her salvation is no longer a pressing concern for Tricia.

Tricia does not know the reasons why Emily was required to take this road with her condition, but she prays that God will allow Emily to use her journey to help others. Tricia quickly admits, selfishly, she would love to see Emily witness as a missionary. More importantly, her wish for Emily would be for her happiness. Tricia prays Emily will learn to accept what she is given and use it for God’s glory.

Tricia is aware that her loss does not come in the form of death. It is the loss of Emily’s childhood and the loss of the security for her family’s health that she struggles with the most. Her grief is found in toddler dresses Emily never wore, holidays spent in the hospital, watching Emily on a vent for twenty days, never financially recovering and the fear of another infection that could be Emily’s last. With Christ’s strength she finds gratitude in the closeness that she has found in her relationship with God, the friendships she has formed along the way and never taking for granted the chance to look into her daughter’s beautiful hazel eyes, just as she did the day she was born.

“A loss isn’t a one time event. It is what we endure each day. Our attitude and trust in God determines how we survive”. I couldn’t have said it better, Tricia!

If you would like more information on Emily's chosen charity, please visit them at:
www.childrenwithhairloss.us . Tricia welcomes your questions and comments. You can contact her at tevans413@att.net !!