Nobody said this was going to be easy. Friday’s news wasn’t what anyone wanted to hear, but it’s OK. We’re all OK and we’re going to be OK. Unfortunately this is not the speed bump that we hoped surgery would be. Instead, it’s more of a pot hole. It’s jarring, disturbing and leaves you shaken but we’re still moving forward and nothing has changed. After a very eventful day and night of broken sleep on Friday, Liam woke up early on Saturday morning in the Pediatric Observation Unit (POU), examined and assessed his body with the mass of wires attached, IVs inserted, bandage on his side, and declared he wanted to go home. I told him that in order to go home he’d have to walk, eat, and go to the bathroom. It was about 7:30 a.m. At 8:30 a.m. he announced he was ready to take a walk…naked. I convinced him to at least put on a pair of Crocs and dinosaur underwear. After disconnecting him from the tangle of wires attached to various points on his body that monitored everything from his heart rate to the amount of oxygen levels, I very carefully lifted him off the bed to stand him up on the floor. He has an incision in his abdomen and any contraction of his stomach muscles is extremely painful. He kept saying to me, “don’t hurt me, Mommy, don’t hurt me.” It broke my heart to hear him say those words. In a million years, I would never do anything to hurt my sweet Prince. Never. And then he was up and walking to the surprise of the POU nurses who happened to be two “old” friends, Reece and Dani. It was less than two months ago that Reece and her family were celebrating Liam’s birthday with us and now she’s caring for him. Liam stood straight up and gingerly walked to the end of POU unit, turned around and walked to Reece’s desk where he asked if he could sit in mommy’s lap and play with her computer. So we sat together and he pressed buttons on the keyboard. He spent the rest of the morning watching Curious George, reluctantly drinking water and sucking on his beloved pacifier. A few hours later he announced he had to go pee pee and asked me to get him out of bed so that he could shuffle his way to a toilet in the room. This is what Larry and I truly love and admire about our son. He has an indomitable spirit. You can’t bring him down. He is truly our superhero. He is amazing and we are honored to be his parents. He is one of kind.
When our dear friend Fraya, who Liam calls Aunt Fraya and who made Liam’s spectacular birthday cake, arrived on Saturday morning to keep us company…Liam croaked out via his anesthesia-induced voice, “Aunt Fraya – There’s a chair right over there for you to sit.” That’s our Liam…always more concerned for everyone else.
I had a long talk with one of Liam’s oncologists on Saturday and while it was a very tearful conversation for me, it left me feeling much better about the situation. I asked the tough question that no parent should ever have to ask and was assured this was not our situation. The whole thing is really quite bizarre, not that bizarre makes it any easier. Liam has sailed through a very difficult treatment regiment and risen to every challenge. He has had no evidence of disease (NED) since last June. His most recent tests performed July 9 – 11 showed that everything was still status quo. The LDH levels in his blood were normal, his urine markers were normal, his bone marrow was clean, his MIBG scan was clean, and yet here we are in a place we never wanted to be but one that many, many families have traveled down before us. We’re certainly not alone. And the strangest thing is that this spot on his right kidney was there in April and stayed the same between then and now. As anyone who knows neuroblastoma understands, this certainly is not characteristic of the disease to do nothing. If I take a glass half empty view, this would be unbearable. If I take a glass half full view, we are incredibly lucky to have caught whatever this thing is in such an early stage that it doesn’t even register on any test. This is a manageable bump. This we can deal with. This we can handle. This, though, also serves as yet another reminder of how much we need to take e-v-e-r-y day as an incredibly special gift. Time is the most precious commodity and it needs to be celebrated and savored. And not knowing what the future holds, something none of us knows but that has a special poignancy with us, we’ve decided we need to step up our commitment to raise money for pediatric cancer research and cherish even more every day we have with Liam and Ella. This news didn’t defeat us, it rededicated us.
During our conversation, I learned that the frozen slide of the dime-sized sample taken consisted of 95 percent “junk” (scar tissue, part of a cyst, and other post-op stuff), but in that tiny sample were a few rogue cancer cells that I’ve named, “Little Fuckers.” So now we need to do, as Dr. Kramer termed it, “mop up.” Even though Liam is technically NED, we now know there are still cancer cells that need to be eradicated. Liam is likely facing two rounds of high-dose chemo. He’ll lose his hair, again. We’ll need to traverse the crevasse between having no white blood cells and the risk of germs and infections, and having those precious white blood cells, again. He’ll feel awful, again. His energy will be wiped out, again. He’ll get skinny, again. But there’s one thing about Liam we know will not happen. He will not complain. He never does. He asks an endless litany of questions but he never complains.
We arrived home early Saturday evening and Liam asked to be on the couch. Within an hour of being home, a phone call came from Fireman Tommy. Would Liam like visitors? And shortly after 10 firemen were in our apartment visiting Liam and two fire trucks were parked out front. Liam smiled with excitement and true happiness to see his guys. And as I looked at “The Guys,” I thought about how Liam too is a firefighter. You never know when you’re going to be called into battle but when you are you go. You just go because it’s what you have to do. It might be scary and it might seem like an out-of-control fire, but it can be won if you fight with clear plan. And as Liam had his guys circled around him, the ladder truck raised its ladder for him to see from the apartment window. It was right there ready to join the fight.
Throughout the rest of the weekend, Liam rested, we loved him, encouraged him to walk, eat, drink, and tried to refocus our view of the situation. It is difficult, yes, but our precious son is still our precious son and he’s very much here with us now which is cause for celebration every day. True to Liam form, he refused to take any pain medication. He simply refuses. He has a very Zen-like way of dealing with pain. He breathes deeper and gets very quiet, but he doesn’t cry and doesn’t complain. He just deals with it in a very private way. Getting him to eat is already becoming a challenge, but we can deal with it.
The day before his surgery we spent at our home in New Jersey for a day of swimming and bike riding. Liam has made amazing strides in the pool this summer. Two weeks ago he started jumping from the edge of the pool which means getting his head completely wet, never a favorite thing. And the day before he was plunged back into the hospital, he taught himself to put his face in the water and hold his breath and do a running jump into the pool. We cheered. He smiled ear-to-ear. We told him he was amazing over and over and how proud we were of him. He did it on his own and was delighted with his new-found skills.
On Saturday morning when he was walking at 8:30 a.m., the first child in the POU to walk that day, I again told him he is amazing. And Sunday night when we were putting him to bed after a day that included a fireman playdate, walking, visiting with Grandma and recuperating, he looked at us and said, “I am amazing.” Yes, my dear sweet, sweet son, you ARE amazing.
We can deal with this. We have to. Liam wants us to.
