It’s hard to describe what Friday was like. If I had to choose one word, it would probably be anguishing. To know that the life and future of your precious child is in the hands of someone else, is one that requires utmost faith in order to get through. When I heard Dr. LaQuaglia’s voice saying everything was “just peachy,” I broke down and cried heavy, stress-relieving sobs. As a mother, I will forever be grateful to him for giving me what I needed to stay centered throughout the long surgery. After we were told that Liam’s operation was over, nearly 10 hours after it began, one of the surgical nurses who was in the OR with Liam, came to see us. She went out of her way to find us to tell us that our brave son did great; that Dr. LaQuaglia relentlessly went after every fragmented piece of tumor that resembles poison ivy in the way it wraps around veins, vessels, and organs; and that everyone in the operating room was moved by Liam’s story after reading about and seeing pictures of him on his blog which they were looking at in the operating room. She didn’t have to come find us. She didn’t have to reach out to us. And once again I was left with a feeling of humility that someone who doesn’t even know us cares enough to join the fight.
How Dr. LaQuaglia can stay so focused on such small details for such a long period of time in an incredibly high pressure situation is beyond comprehension, but has my complete admiration. We waited for him in the small consultation room for what felt like another 10 hours. We tried to come up with small talk but I couldn’t stop pacing. All I could think about was what news would be delivered once that door finally opened. Would it be the same as when I was at St. Barnabas and the oncologist and surgeon delivered the news that Liam had stage IV neuroblastoma? When it finally opened I felt numb with anticipation. Would we find out a kidney was lost? Would we be told that he tried but just couldn’t get all the tumor and a second surgery would be required? Would we be told something worse? He looked tired but relieved and told us what we wanted to hear. The nasty, invasive tumor was gone and Liam had two kidneys. We thanked him and while he graciously accepted our gratitude for saving our son’s life, he also told us to thank someone else and pointed up. As he has told us, when children are in his operating room…they are his children. After he delivered his report on how Liam did, he officially handed our son back to us…with a new lease on life. We dug him out of the cravass, and now have him on a more even playing field. Liam still has cancer, there are still cancer cells preying on his body, but the mass of cancer cells are gone. The next step is to go after the stragglers that escaped and try to retrain his body to identify and fight off neuroblastoma cells.
The rest of the weekend is a blur with one central focus…getting Liam off the ventilator and mass of wires monitoring every aspect of his body removed. One of my greatest fears about surgery, which I haven’t even shared with my husband, is that Liam wouldn’t be Liam post surgery. That in addition to taking the tumor, it would take away his personality. With the first words of “All Done” and “Paci” were spoken after the ventilator tube down his throat and NG tube down his nose were taken out, those fears vanished. And true to Liam form, he was saying “No Thank You” and “Yes Please” to the doctors and nurses who were caring for him.
It’s now Sunday, and to everyone’s surprise, we’re back at Sloan-Kettering. Liam was excited to take an ambulance ride, even if it was only one block, and liked hearing the sirens heralding his return to Sloan. As we walked through the lobby, Liam recognized where he was and his anxiety level seemed to decrease being back on familiar turf. Today it’s one week until Mother’s Day. It’s also one week until Liam’s 3rd birthday. I can’t think of a better Mother’s Day present than to celebrate my son’s birthday without the tumor present as an unwanted guest. We still have a very long way to go in treating Liam, and we are still in the “intense” phase, but the lynchpin to getting him better was to get the tumor removed. Thank you everyone for getting us this far. To give this process a sports analogy, I think we’re just about at the first half of the game in this initial battle. We’ve gone through three rounds of high-dose chemo, two bone marrow tests, and major surgery. The next phase, which begins as early as this week, includes at least two more rounds of chemo, radiation, and 3F8 treatments. We’re making it…one precious day at a time. And I do mean “we” are making it because it takes all of us, even those people I don’t know but who are cheering on Liam, to win.
-Gretchen
