A Journey of Hope and the Path To Healing

Aleksandr was your typical 15-month old. He had that clumsy walk that he is trying to nail down, babbling comes and goes with the occasional “Mama” and “Dada”, and of course, there is the picky eater one day, food vacuum the next. So when we took Alek in for his 15-month baby wellness check-up, we figured the worst thing we would be discussing would be his slow speech development. It wasn’t until the pediatrician was wrapping up with the standard physical when he noticed something was off. He called in for a second opinion, which led to an ultrasound, which led to another ultrasound with a Navy captain. What the heck is happening?! Things seemed to spiral every which-way until we went back to the pediatrician and he informed us that they had found a mass on Alek’s liver. Speechless, dazed, questions firing left and right, we wanted answers! And the answers did come, two weeks later.

Alek was officially diagnosed with hepatoblastoma, or liver cancer, in mid-March, 2015. We were very fortunate that things were rolling at such a fast pace, almost too fast at times when we were trying to still identify that our baby had liver cancer. Alek was admitted to Naval Medical Center Portsmouth the following day after his diagnosis which would begin a 6 to 7 month journey of which seemed like never ending hospital visits. It was during Alek’s first admission, shortly after his broviac line was placed, that we were told about Edmarc and the services they provide to families in need of home nursing assistance. Quite honestly, we felt like we were just checking off items on a shopping list when we heard of Edmarc.

Shortly after Alek’s first admission and first round of chemotherapy, Edmarc came out the same week to visit and perform the admission physical. We met a wonderful nurse, Madalyn, and an outstanding social worker, Abigail. As anyone whose been through the process before knows, the admission physical was a low key and friendly conversation about Alek and what services Edmarc will be able to provide throughout Alek’s journey. As a parent, the only thing you can do is sit there and pray that you’ll remember at least ten percent of what they are saying. Regardless of what conversations passed, it was a very pleasant and welcoming feeling to know that these two strangers, who had never met Alek or us before, were sincerely concerned, not only for Alek’s well-being, but for Mom and Dad’s as well.

With chemotherapy already underway, we probably spent a good half of our time at the Naval Hospital. From admissions for chemotherapy, to the dreaded neutropenic fevers, we began to regard the hospital as our second home, and the nursing staff and physicians as close friends. Weeks would pass, some better than others, and during those better weeks, we had the fortune to have Dawn visit us to check in on Alek. Dawn absolutely loved Alek, and if Alek was awake for the majority of Dawn’s visits, we’re sure he’d love her right back! But she always had the unfortunate timing of swinging by to check in on him when he was settled down for a well-deserved nap. When it was time to remove the tumor from Alek’s liver, we were sent north to Boston Children’s Hospital where Alek ravenously ate his first bowl of Boston baked beans!

Throughout the summer, Abby, our Edmarc social worker, was constantly in touch with us to make sure that we were doing well and to see if there was anything, anything, absolutely ANYTHING, that she could do to help us out. We were invited to the annual Edmarc fishing trip, but we had to take a raincheck due to an unscheduled hospital visit. BUT! With a little planning and sneaky work on Dad’s part, Abby was able to help us with taking Alek to see Sesame Street Live when they came to town this past summer. Alek LOVED IT!… for the first 15 minutes of it (Note to Self: Toddlers will not sit longer than 15 minutes at a time, even for Super Grover 2.0!)

As August started to roll into September, so did Alek’s journey battling hepatoblastoma. After four, three-week cycles of chemotherapy, a resection of the tumor and 80% of his liver, and closing out with 2 more cycles of chemotherapy, Alek had done it. Alek rang the brass bell up in the pediatric hematology/oncology clinic at the Naval hospital, signaling to all those present, that he was done! We couldn’t have been happier! What started seven months ago and felt like the end of the world to us, turned into the beginning of a new chapter in Alek’s ever chaotic life as a toddler.

There will always be people we want to thank from the deepest of our hearts for everything that they did to help us and Alek get through this dark and scary portion of our lives that we will forget. But we will never forget the wonderful support we received from Edmarc’s terrific staff of nurses and social workers, who are always just a phone call away.