At only three years old, Stephen is the bravest person I know. At two years old, he was diagnosed with Acute Lymphocytic Leukemia. We had to leave his twin brother, Brandon, at home while we drove over 100 miles away to begin his treatment. His prognosis was poor because he had the leukemia for so long, but, he must have decided that he was going to beat this anyway. Even though he couldn’t talk, it was as if he knew what had to be done. He never fought the Phlebotomists when they woke him up at 5:00 am to draw blood every morning. He never fought his oncologists during the painful spinals and bone marrow aspirations. He would only lay there with tears streaming down his little cheeks holding my hand. He always wanted to hold my hand. I was told by so many of the doctors and nurses about how well he behaved. Rarely did they get a patient who was as brave and accepting as Stephen.

Just a little over a week after his diagnoses, Stephen’s IV clotted. It was decided that he needed to have a mediport, a device that is placed in the chest for IV access. I took him down to the surgery waiting room and waited patiently for the nurse to come and get him. Crying, I hugged him tightly and told him that everything would be OK. I remember watching him reach out to me and crying as the nurse took him down the hallway. Little did I know about what problems this surgery would cause. My little one would never be the same.

Finally, after a few hours, the surgeon came out of surgery and sat with me in the waiting room. He told me that Stephen was OK, but there were some problems while intubating him. His airway had swelled up around the tube and now they could not take it out. He would have to heavily sedate him and keep him in intensive care until the swelling went down. I was devastated when I saw him. He was so still and limp. He spent weeks like that. They tried to take the intubation tube out several times, but they were never successful. It began to become apparent that Stephen was not going to get the intubation tube out, so after five weeks, the doctors decided to do a tracheostomy (tube inserted into his neck so he could breathe). Before they could do surgery on him, they needed to wake him up. They began decreasing his medication, and finally one morning I came in and he was wide awake. The first thing he did when he saw me was try to smile. I sat and played with him for a while. I grabbed his foot and pushed it up against my chest pretending that he had just kicked me. All of a sudden, he began laughing, laughing so hard that tears were rolling down his cheeks. Everyone one in intensive care could hear him laughing. All the doctors and nurses had to come watch. No one could believe that with everything this little boy had gone through and with him still being intubated, he was still able to laugh. It was the sweetest sound I had ever heard.

Within a week, the trach and a G-tube (tube inserted into his stomach so he could be fed) was placed, and he was moved up to the oncology floor. From there, things only got better. Stephen was in remission by now, I had learned how to care for his trach and g-tube, and he slowly came back to me.

Now, here we are a year and a half later. He is still on chemotherapy and will be for the next year. He has to get blood work drawn every two weeks to make sure the leukemia has not come back. We went to go get it drawn today. It still amazes me to see him run to the lab yelling “POKE, POKE!” As loud as he can. He climbs up in the chair and the phlebotomist gives him an alcohol swab so he can clean his arm. Without being held down by an adult, she gets the needle ready and then pokes him. Not a flinch, not a tear, he just looks up at me and smiles. I am so proud that this is my son, but at the same time, I am so sad that a little three year old thinks this is normal.

A million times a day I wish I could take this disease, this trach and G-tube away from him. I would do it all for him if I could. I think every good parent wishes that.

Danielle Hughston MDH5288@AOL.COM

The loves of my life, Brandon and Stephen Hills (Acute lymphocytic leukemia, tracheal stenosis, aspiration of thin liquids, trach and G-tube) They love each other and are living life to the fullest!