Because of Will
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Willie has always been a happy, sweet, almost completely uncomplicated baby. Crying or having tantrums or screaming fits was just never in his personality. We marveled at what an easy-going baby he was, and we kept our fingers crossed that we weren’t jinxing ourselves. We were so lucky to have such a great kid. He was a joy unlike we’d ever known.
On May 1st, 2018, Willie had his routine 18-month checkup. He’d been sick a lot in the prior months and we knew something was very wrong but what happened next we never expected: during his exam, our pediatrician felt something in his stomach, just beneath his sternum. Alexa had enough medical background to know one thing: this was not good. It was going to change our lives. It was the beginning of the worst year of our lives and a nightmare no parent or child should have to suffer.
We were immediately sent to the emergency room of one of the Southeast’s top children’s hospitals, where we waited 24 grueling hours to confirm what we already knew in our hearts: he had Stage 3, inoperable, high risk neuroblastoma. The tumor was the size of a grapefruit. It was wrapped around his heart and had pushed organs out of place. Willie was bewildered at all the attention and amazed the nurses when he tolerated scan after scan without crying or complaining, all the while unable to eat or drink so that the surgeon could biopsy the tumor at her next availability.
During the biopsy, at midnight, all of us on no sleep and on day three in the hospital, his portal vein - a major blood supply to his liver - was accidentally severed. The tumor had done more damage in its growth than they could see. He would be in a medically-induced coma, intubated and unconscious for days. His scar stretched like a rainbow across his entire abdomen. We were unsure what function would be regained or how many more surgeries he’d have have as he grew older to keep his liver healthy.
We began chemo and his tumor did not respond or shrink much. A stem-cell harvest was performed for later use during stem cell therapy a few months away and chemo was continued. Near the end of chemo, we were told his liver and portal vein were too damaged for stem cell therapy. It was cancelled. That left resection and radiation if possible, but that too was in doubt. Since the tumor was wrapped around so many major veins and arteries, it was hoped and expected that they would remove just 3% of the tumor. We were running out of hope and time.
During this, Willie had withdrawn emotionally. He laughed from time to time and was enamored with his favorite show: Bubble Guppies, but he was only a fraction of who he was before. He knew he was loved and he loved back, but it was as if he had become a shell; his bright personality clouded by everything that was happening to his tiny body. His speech had ceased, the smiles were few. We don’t remember how we survived those days.
On September 27th, surgery for the repair of the portal vein in hopes that he could continue chemo or that we’d have any options at all was performed. The vein was too scarred to repair, so they turned their attention to the tumor. And you know what? They removed 90% of it. They had to make some compromises and remove most of his Adrenal glands, but the remaining 10% of the tumor was inactive. It was the best news of our lives.
In ICU isolation for more than three weeks, he had many difficulties recovering. The surgery was so extensive that it took a huge toll on his body. He became unemotional. Robotic. Withdrawn. He was in pain and tired. But after week four and a move to the main ward... he came home. On November 15th, 2018, we were told he was officially in remission.
It took three months for him to start showing us that beautiful personality again and gain his body weight back with the use of a feeding tube. But surely enough, he slowly began to return to his highly, happy, energetic self. Somehow, some way, the Willie we knew and loved had remained inside him, and some time around the new year he came back to us. Willie was well again.
We began Retin-A therapy after discussion with our doctors to continue his treatment in some small way. During his illness, we had become aware of the DFMO clinical trial in progress at a few select hospitals. We read up on it and found it was available in Norfolk, VA, just 3-4 hours away from us through a close friend of ours. Around the time of his first round of chemo wed looked into it and it was decided we would try to take part in it.
Here we are today, one month into the DFMO clinical trial and Willie continues to thrive. His hair is full and curly. He’s in daycare. He’s talking more and he’s learning at an accelerated rate. He’s having speech therapy to try and catch up to the other kids. He’s eating and growing and is the same baby boy we knew before, albeit with a few more tantrums, but that is to be as expected for any toddler.
Our nightmare had grown slowly worse and worse and the 18-20 month treatment course we had expected was cut shorter and shorter because of it, but because of his incredibly brave and talented surgeons, our boy was given another chance. Another chance to fight on and live, all because of one person’s skill and willingness to try to excise what was thought to be an impossibly-complicated tumor.
Anything can happen. Even at the lowest point, something, someone, can come out of nowhere and change everything in an instant. We’re very lucky and we know it. No child should have to have his chances taken away until the last moment like we did. Neuroblastoma needs research so that every child has a chance to beat it. They are the most innocent, and most wholeheartedly kind little people on Earth. They deserve everything we can give them.
Please help give others the second chance that Willie has. We have no doubt that there will be more stories like Willie’s, but we hope we can help to give all of them not just hope but a cure.