ETHAN’S JOURNEY TO A HAPPY DISCHARGE
by Ethan’s Mom
A child’s 1st birthday is a very memorable milestone, but for our son Ethan, it was the saddest day any parent could not even imagine. The day started out as any other day with Ethan going to daycare as usual while his sisters Emma and Hannah went to school. That morning we had no clue life would forever change as we knew it. My husband, Roger, and I both went to work on Friday September 19, 2014, and he worked a half day to take Ethan for his 1-year well visit with our pediatrician. After work I received a call from him to come straight home because our pediatrician wanted us to consult with a Hematology-Oncology doctor at Children’s Hospital of the King’s Daughters (CHKD.) Being a nurse, I knew what to expect but that evening I was in complete mom mode. After dropping off the girls at grandpa’s house, who they lovingly call Lolo, we sat in the emergency room waiting on repeat labs and met Dr. Anthony Villella, the hematologist-oncologist. He confirmed our greatest fear. Our sweet little boy Ethan, on the eve of his birthday, was diagnosed with acute lymphoblastic leukemia (ALL) or cancer of the white blood cells. My husband and I were in tears holding our little boy who had no clue of why his parents were crying. What would we tell our girls – Emma who was only 7 and Hannah 5? What would this mean for Ethan? So many questions running in our heads… did we miss something? Other than some eczema or occasional cold, he was a healthy boy. Ethan had no symptoms to make us think anything different.
At his one-year appointment, the routine check of Ethan’s iron level showed it was low. Chesapeake Pediatrics, our pediatrician, did a follow up and drew a complete blood count. It not only showed his iron level was low, but hemoglobin and hematocrit were low as well; maybe he was anemic? But his white blood cell count stood out at 3 to 4 times more than the normal value, and our pediatrician told my husband what this most likely would mean. The diagnosis indeed was leukemia which was caught just by taking our son to a routine yearly checkup. Ethan was admitted that Friday night. His birthday party that was planned for Sunday was cancelled. We brought everything along with the cake and celebrated Ethan’s birthday in his hospital room that Sunday. Never would we ever imagine Ethan with his birthday cake in one hand and an IV in the other. Yet this little boy was happy to have his family around as he ate with his hands. Then Monday he was in surgery to get a central line, and his first chemotherapy started Tuesday.
We typically went to CHKD at least once a week. When going as an outpatient, we went to clinic where he got his labs and chemotherapy, and then we went home that same day. As an inpatient it meant that Ethan was admitted to the hospital and stayed a couple days. Everything did not always go as planned as it all depended on how Ethan was doing. For example, one week he had bad mucositis that gave him sores in his mouth that made it painful to eat, and he just did not feel well. This was a side effect from high dose methotrexate (chemotherapy drug), so they had to postpone until the next week to let him recover. The last time he had this medicine in a previous cycle, he was in the hospital for 3 weeks on a pain pump and TPN (nutrition via IV) because he was not eating or drinking with bad mucositis. After that incident, we did some preventive therapy ahead of time that helped. At least he was drinking and had pain medicine, so we could keep him at home. I was on leave, so I was always available to be there for the hospital stays while Roger cared for the girls.
We have learned to look at all the many things to be thankful for during this most challenging time. It has grown our faith not only in God but has really put things in perspective. Our busy work weeks and meeting deadlines did not seem to matter. It has taught us to be grateful for the simple things. We’re not going to say it was easy, because it wasn’t … it was hard! What helped tremendously was Edmarc along with our family and friends. Our nurses were amazing! The very first nurse to visit us at home was Teresa, who we met at the clinic in the hospital. She was a nurse not only at CHKD, but also for EDMARC. The care at CHKD and Edmarc was continuous. The teams knew the plan, and they spoke to each other. With Edmarc our primary nurse and our social worker would be a part of our journey over the next three years.
Thank you just does not seem enough. Edmarc and all the people who have come into our home have been such a blessing. So much gratitude for unforgettable experiences during this time in our life with not only Ethan, but with our girls. At times it took us away from the harsh realities of the cancer life and the “new normal.” It has opened our eyes to so many organizations that are doing so much good that we did not know about until they came into our lives with such open, caring, generous and giving arms. The Yorktown Rotary Club, ROC Solid Foundation, the Noblemen, and Give Kids the World are just a few of the awe-inspiring groups of people we met.
Thank you for all the love and support! Although it was sad to see you all go, our discharge was a happy one. Ethan was able to go to school this past year and completed pre-K. He is thriving and doing well … such a happy boy! To look at Ethan you would never know all that he has been through. I know that for me and my husband, our family will be forever changed and forever grateful for the special people we have met along the way and the families that we have come to know at CHKD and Edmarc.