Christian's Story, as told by his parents

Christian's Courage

On Monday August 6, 2012, the glands in Christian's neck were very swollen.  I almost brushed it off as a typical children's virus until we looked at his tonsils.  They were enormous and almost blocking his airway.  I immediately took him to the pediatrician.  After days of negative strep and mono tests, all while his lymph nodes kept getting bigger, they ordered a CBC blood test - just to rule anything out.

Come Wednesday night, I was working late and alone in my office when I got a call from the pediatrician.  He told me that the lab had taken a look at the CBC and Christian's white cells seemed abnormal.  He told me that it looked like our beautiful, four and a half year old son may have Leukemia.  He continued to tell me that Leukemia was treatable and curable, but an oncologist was waiting for us at UMass Children's Medical Center in Worcester and we had to pack our bags and go immediately.

Within 24 hours, we met with one of the pediatric oncologists, Dr.Neil Grossman and the diagnosis was confirmed that Christian had T-Cell ALL, which is a rare form of childhood Leukemia.  Christian would be on chemotherapy treatment for the next three and a half years and have 8 days of low dose cranial radiation.  We agreed to place Christian on a clinical trial for his treatment in hopes that we could honor those children with cancer who came before him and to hopefully help T-cell patients in the future.

During that first week, we met the entire pediatric oncology team, including Dr. Naheed Usmani who would be the doctor that Christian would see for the majority of his treatment.  What made this team so special to us is that not only did they give us hope that Christian could get through this, but they also looked at Christian as though he was their own.

At first, Christian had a hard time adjusting to hospital life.  He became increasingly nervous whenever he needed to have a procedure done.  He endured multiple bone marrow aspirations, lumbar punctures with chemotherapy, IV chemotherapy and multiple extended hospital stays.  Thankfully, his oncologists made sure that Christian was comfortable and that his needs were met first in order to make him less fearful.   For example, Dr. Usmani would let Christian wear her rings during spinals so he felt he had super powers.  She also started the Sidekick Program which matched up 1st year med students with a sick child.  Christian was matched up with Walter Palmer and they instantly hit it off.  Walter would come and visit Christian during every in-patient and clinic stay.  The two would walk the halls of 5-East, IV pole in hand and fly spaceships around.  Christian just loved going to UMass because he knew he would see Walter and many of his other friends there.

The child life program here at UMass is exceptional.  Christian loved getting visits from Child Life Specialist, Francis, who once gave Christian his own doctor's scrubs and jacket which made Christian think that he ruled those halls on 5-East.  Even though he faced port accesses, high dose chemotherapy or radiation - he was just thrilled to be here to play with friends.  Christian started going to clinic in the Benedict Building shortly after starting treatment.  He was given a tour of the clinic by Child Life specialist, Kris, who soon would become one of his favorite people.  All the nurses at clinic were so caring and friendly.  They made coming to clinic easy and taught Christian easier ways to handle getting his port accessed for transfusions.  They helped to answer questions we had and also gave us many hugs and provided hope during some stressful times.

After a year of treatment, we were spending much less time in patient and we knew it was high time to start giving back to the hospital that was caring so well for us. How do you even begin to give back to the hospital who is saving your son's life, we wondered?  My husband, Cesar, began donating blood at UMass on a regular basis. We donated toys to Child Life whenever we could, and we started our own team -- Christian's Courage -- for the UMass Medicine Cancer Walk. We have walked for the past 3 years, with many of our family and friends joining us in support of this amazing hospital.

We feel it is so important to help fund cancer research here at UMass, since it is because of research in the past that our little boy was given over an 80% chance of survival from pediatric cancer.  We have been told that Christian's own T-cells have been used at this very facility in hopes of helping other children in their fight with T-Cell Leukemia.  While experiencing a myriad of emotions throughout Christian's journey, we felt grateful that out of such a scary and life changing situation came the hope that Christian would be able to help other children one day. We always knew he would be brave throughout treatment, but to know that he can help save a child's life through cancer research at UMass simply exceeds anything we could have hoped for.

Christian is now eight years old and nearly 3 and a half years in remission. He finished chemotherapy this past Thanksgiving and had his port removed right before Christmas.  We are so thankful that everyone here at UMass was able to give Christian a chance of having a childhood that I know he will look back on as a great one.

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