Sunday, May 2nd, 2021

Day 2 - Surgery Day

Nothing ever goes as planned. 

While this weekend got away from us and we weren’t enjoying a nice camping trip with our other two children. Lukas and Lincoln got a chance to be with their cousins and auntie for some fun and excitement, still in the dark as to the horrific findings their parents just obtained about their baby brother. 

Their absence gave grandma some quiet time. She had graciously been caring for our small human children, as well as our furry children (2 dogs and 1 cat). While immediate family had been kept in the loop about what was found and what was going on in the hospital, they too needed some time to digest this information and realize the threat it posed to Declan. 

But, today was Sunday. Not a lot was planned for little man as not a lot could be on a weekend day. So our expectation was to have a quiet day, from within the hospital room, and just be with our son. This was short-lived. The oncology team was quickly joined by a neurosurgery team to discuss the findings of the MRI. Declan’s tumor had been applying pressure on his spine, which is causing a type of paralysis in his lower extremities. 

There was so much else going on, and Declan was so miserable, that we almost didn’t think about the weakness he showed in his legs. At the ER, and at numerous doctor visits just prior to the ER visit, Declan would pull his legs towards his chest, almost writhing in pain, but he hadn’t been moving his legs… at all. When we first arrived, he had an IV in his arm from the Parker ER, and a second IV in his foot when we arrived at Children’s Hospital. Eventually he had these removed, but then had another IV placed once we found out he had a mass. This hadn’t been just fatigue from all the excitement at the hospital, he was being paralyzed by his tumor! 

Because of the involvement of his spine, removing the tumor wasn’t an option, so the next step would be to obtain a biopsy of the tumor, Declan’s bone marrow, as well as get a medical device called a “port” placed. 

Everything had been moving so fast, before we knew it, Declan was scheduled for surgery that day. A whole new wave of emotions had hit us. 

What would happen to Declan’s mobility? Would he regain feeling in his legs? Would he ever get to his milestone to crawl? Or walk? 

All these thoughts continued to haunt Jennifer and me, but it didn’t come close to the looming dark cloud that was surgery. Declan is 6 months old. Obviously, he had never needed to endure surgery (unless, somehow, his momma’s cesarean counted as a surgery by proxy). 

Nevertheless, his mother and I was worried about how it would go. Complications happen, and he is tiny. His blood pressure had always been high, is that going to affect anything? Set aside the fact that Declan was already cranky and upset because he couldn’t eat 6 hours prior to surgery, he was going to be alone without mom or dad by his bedside to hold his hand and be with him through this procedure. 

This was the longest, hour and a half of our lives.

Jennifer and I took this time to at least grab a bite to eat, and meet up with a friend of Jen’s, Courtney, who has a son with a rare diagnosis that kept their family at a hospital for weeks if not months on end. Having someone who could relate to the struggles of hospital bound life – all while not knowing what was in store for your small child is something Courtney and her family had known all too well. And while every family member or friend we kept in the loop would respond with the nearly the same scripted, “Let me know if there is anything we can do to help.” 

What could be done? Our son’s cancer couldn’t be removed. We still need to know what type of cancer this was, let alone what stage it is in. Grandma is already watching our other kids – feeding them, taking them to school – as well as caring for the animals. What was to be done? In the moment, Jen and I never knew how to respond to this request. It was apparent that everyone wanted to help us, but we were so unsure as to what that help even looked like. We weren’t home, we were in the hospital. We didn’t have groceries so… meals? That was one of the only things we could remotely think of, and that was even if we could stomach food for that particular day. Jennifer’s friend, however, had been in this position before. 

She practically read our minds for the things we absolutely needed that we had no idea we really needed. Toiletries, brushes, deodorant, soap, mints, outfits for Declan that buttoned so as to keep port access and NG tubes available, puzzles and coloring activities to keep our minds occupied and give us something that has a beginning, a middle, and an end (as we had no closure for our son, but could finish some type of task here), snacks, personal water bottles, a book to help our kids at home cope with our absence, pens, pencils, and notebooks to write down the important information soon to come pouring out from our team of doctors, laundry soap and dryer sheets, a dirty laundry sack, antacids, headache medicine, lip balm, razors, and various items that anyone with a uterus would appreciate. 

She had no idea how much this helped us out (or perhaps she knew exactly how much it would help us out). Jennifer and I had kind of mulled over that very day of the things we could say we needed when people asked, and it was almost like Courtney had read our minds! 

This was a much-needed distraction as we awaited Declan to come out of surgery. We had signed up for text alerts to get updates on his status in surgery, but had not heard anything for over an hour. 

We were starting to worry. 

We stopped by the OR waiting room and that’s when our surgeon had come out to greet us. He brought with him a picture of the culprit that had been causing our son’s anguish all this time, and it was at this moment that I knew where all my anger had been directed. 

This mass. This overgrown, piece of runaway cells that had invaded Declan’s abdomen. I wanted it dead. Upon hearing the news of Declan’s cancer a wild range of emotions were felt. Mostly sadness and despair, but an overwhelming anger. Not sure why, and I certainly wasn’t angry at anyone in particular, but just angry. Now that we had a picture of his mass… I knew where that anger was from and what it was directed towards. It just made sense. Never had I ever looked at a picture and knew exactly where my emotions could be laser focused. The surgeon was gracious enough to give us a picture of this mass. A memento of Declan’s 1st surgery. 

His port was placed without any issues, and they had collected the biopsies necessary for confirmation of his cancer type: presumed to be Neuroblastoma. It is important to note that we were approached by one of the oncologists that Declan’s solid mass, bone marrow, and blood could be used in research further down the line to help catch, treat, and cure Neuroblastoma should we opt into such an optional study… hands down, and without question, we absolutely agreed. If there is anything that can be said about Declan’s legacy and mark he will have on the world, it will be that he can help families in the future feel more confident in the treatment that could come from this little guy’s donation.