Part 1: The Diagnosis
It wasn’t very long ago that I left my career in Marketing and Advertising to become a stay-at-home mom. After a very long struggle trying to conceive, I would finally be living my dream as a mommy. Brandon and Aiden were born premature at 30 weeks weighing 3 & 4lbs due to Twin-to-Twin Transfusion Syndrome. Both boys thrived in the NICU and came home 57 days later with a clean bill of health, other then being on apnea monitors for security. We were blessed and beyond lucky to be taking home two healthy, happy, and beautiful baby boys. Overwhelmed and beyond exhausted, my husband Brian and I quickly settled into our new roles as parents to twins. Rocking them at night, I stared into their sweet faces and dreamed of all the things I couldn’t wait to do; play dates, parks, walks, library days, mall strolls, and showing them off to anyone and everyone! I was ready to bask in the glory of being a Twin Mom.
Around six months of age, Brandon was eventually diagnosed with Beckwith-Weidemann Syndrome (BWS), a rare childhood overgrowth disorder. We were told Brandon had a very mild case. No problems were expected. He would just be a chunky baby and lose his weight once he started crawling, etc. By the time we found out he had this, we were already behind on the standard BWS protocol: AFP levels checked every six weeks until the age of eight, and an abdominal ultrasound every three months until the age of five. Though rare, some BWS kids develop cancerous tumors. At our urging, the pediatrician scheduled the first scan in early December. He said “we’ll go ahead and schedule, but I’m sure we’ll find nothing.” Those words echo in my mind all the time.
We were happily preparing for our very first Christmas with our two beautiful boys. Excited first time parents, we had everything up and ready weeks before Christmas. The tree was decorated, presents were wrapped, and the stockings were hung with care. Two weeks before Christmas, we got “the call.” The call that would change our lives as we knew them, forever.
I knew something was wrong when our Pediatrician called instead of the nurse. He told me a solid mass was found on Brandon’s ultrasound and we had to see a pediatric oncologist right away to find out what was going on. He said “sometimes these turn out to be nothing.”
My heart dropped, I think deep inside I knew this was not going to be just nothing.
The next day we were to have a “consultation” with the Pediatric Oncology Staff at Medical City Dallas, everything happened so fast. Brandon was admitted and the word, Hepatoblastoma was tossed around. I was extremely unprepared, and beyond devastated. We thought we were coming in for an appointment, and that they would say “it’s nothing, sorry for the inconvenience.” We never thought we would be admitted. This is where the train derailed and our nightmare truly began.
The first night was the worst. I was in denial, and I was angry with everyone. Angry at the nurses that were poking my upset baby, angry at the doctor’s who were telling me we could not go home, angry that this was supposed to be our first Christmas together. The anger soon melted away to painful heartbreak and fear. The days events had left us tired, yet neither of us could sleep. Brandon whimpered. I know he was tired. For a baby that was used to co-sleeping, I imagined he found the cold metal bars of the hospital crib less than desirable. In order to soothe him, I put him in his stroller and rolled it up next to my little couch. He seemed to watch me for a long time, like he was making sure I was still there. I watched his long lashes finally close as he drifted off to sleep. Every once in a while he would wake and I was right there, rolling him back and forth all night long.
As the morning dawned, I could not believe we were still there. I longed to wake from this horrible nightmare. A cancer diagnosis could not be confirmed until he had a biopsy. Although all the signs pointed to Hepatoblastoma, they still needed proof. I think I pretty much stayed in angry denial thru all this. Brandon had his surgery, and a few days later, we had the meeting a parent should never have to have. Our baby does have Stage III Hepatoblastoma, a rare liver cancer. So rare, that only one in a million children are diagnoses with it. That’s 100 new cases each year from the U.S. ARE YOU KIDDING ME?? It has to be MY baby???!!! I felt like someone punched my gut. I felt lightheaded, sick, and the blood seemed to drain from my body. Brandon was sitting on my lap smiling thru all this, Aiden playing on the hospital floor. “Keep it together for the boys,” I kept silently telling myself, as the tears flowed. How could this be happening?! He is just a baby!!!! A BABY!!! A MUCH WANTED BABY!!!! Confusion and heartache ripped at my soul as our oncologist, whom I have grown to admire and respect told us the statistics, his treatment plan etc. Nothing would ever be the same. We spent our first Christmas in the hospital and Brandon started his first round of Chemo a few days later…
Around six months of age, Brandon was eventually diagnosed with Beckwith-Weidemann Syndrome (BWS), a rare childhood overgrowth disorder. We were told Brandon had a very mild case. No problems were expected. He would just be a chunky baby and lose his weight once he started crawling, etc. By the time we found out he had this, we were already behind on the standard BWS protocol: AFP levels checked every six weeks until the age of eight, and an abdominal ultrasound every three months until the age of five. Though rare, some BWS kids develop cancerous tumors. At our urging, the pediatrician scheduled the first scan in early December. He said “we’ll go ahead and schedule, but I’m sure we’ll find nothing.” Those words echo in my mind all the time.
We were happily preparing for our very first Christmas with our two beautiful boys. Excited first time parents, we had everything up and ready weeks before Christmas. The tree was decorated, presents were wrapped, and the stockings were hung with care. Two weeks before Christmas, we got “the call.” The call that would change our lives as we knew them, forever.
I knew something was wrong when our Pediatrician called instead of the nurse. He told me a solid mass was found on Brandon’s ultrasound and we had to see a pediatric oncologist right away to find out what was going on. He said “sometimes these turn out to be nothing.”
My heart dropped, I think deep inside I knew this was not going to be just nothing.
The next day we were to have a “consultation” with the Pediatric Oncology Staff at Medical City Dallas, everything happened so fast. Brandon was admitted and the word, Hepatoblastoma was tossed around. I was extremely unprepared, and beyond devastated. We thought we were coming in for an appointment, and that they would say “it’s nothing, sorry for the inconvenience.” We never thought we would be admitted. This is where the train derailed and our nightmare truly began.
The first night was the worst. I was in denial, and I was angry with everyone. Angry at the nurses that were poking my upset baby, angry at the doctor’s who were telling me we could not go home, angry that this was supposed to be our first Christmas together. The anger soon melted away to painful heartbreak and fear. The days events had left us tired, yet neither of us could sleep. Brandon whimpered. I know he was tired. For a baby that was used to co-sleeping, I imagined he found the cold metal bars of the hospital crib less than desirable. In order to soothe him, I put him in his stroller and rolled it up next to my little couch. He seemed to watch me for a long time, like he was making sure I was still there. I watched his long lashes finally close as he drifted off to sleep. Every once in a while he would wake and I was right there, rolling him back and forth all night long.
As the morning dawned, I could not believe we were still there. I longed to wake from this horrible nightmare. A cancer diagnosis could not be confirmed until he had a biopsy. Although all the signs pointed to Hepatoblastoma, they still needed proof. I think I pretty much stayed in angry denial thru all this. Brandon had his surgery, and a few days later, we had the meeting a parent should never have to have. Our baby does have Stage III Hepatoblastoma, a rare liver cancer. So rare, that only one in a million children are diagnoses with it. That’s 100 new cases each year from the U.S. ARE YOU KIDDING ME?? It has to be MY baby???!!! I felt like someone punched my gut. I felt lightheaded, sick, and the blood seemed to drain from my body. Brandon was sitting on my lap smiling thru all this, Aiden playing on the hospital floor. “Keep it together for the boys,” I kept silently telling myself, as the tears flowed. How could this be happening?! He is just a baby!!!! A BABY!!! A MUCH WANTED BABY!!!! Confusion and heartache ripped at my soul as our oncologist, whom I have grown to admire and respect told us the statistics, his treatment plan etc. Nothing would ever be the same. We spent our first Christmas in the hospital and Brandon started his first round of Chemo a few days later…
Aiden Bringing Brandon Some Christmas CheerComing Soon! Part 2 Chemotherapy
5 comments:
Thank you for sharing that, Melissa! I love having your perspective here on the blog, and I'm so happy to have you apart of HFC in this way. To many more well written blog entries!!
Melissa, your story, just like Jenny's, is riveting. Even though I've read it, it still seems so unbelieveable that something like this could happen to a sweet, innocent baby.
Thanks for sharing and I look forward to many more posts from you.
Melissa - thank you so much for sharing. I'm eagerly awaiting part 2!
Thank you for sharing your journey on the HFC Blog Melissa. I often read Brandon's caringbridge and the doublestroller page. Your boys are beautiful- thank you for sharing their lives with us. God bless all of you!
Love from Long Island, Erin
Thank you for being so open and honest about your feelings. It's hard and gut wrenching to read but it also causes the reader to feel and admire your strength as you struggle to come to grips with this. I'm looking forward to reading more and watching you grow during this trial. God bless you and the boys.
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