We haven’t updated recently, but Liam is fine. He has grown; gained weight (size 3T pants FINALLY don’t fall off of him); learned how to take pills like a champ; and has a full head of soft, gorgeous hair.
We’ve been hit with several weeks of the words “relapse” and “hospice” swirling around us. Everywhere I turn, I hear those dreadfully frightening words. It’s terrifying and incredibly difficult to not take on the stresses and fears of other families as your own. It’s hard to not feel paralyzed as you wonder if those words are going to enter your life. It’s hard to try and function in two worlds – the “normal” world where conversations tend to relate to “he said/she said” ones and the one where cancer and death is constantly nipping at your heels. It’s hard to stay focused on being your son’s cheerleader and answer his endless stream of “why” questions when in the back of your mind you have a constant loop in your head playing the names of the children who have relapsed or are dealing with setbacks. It’s even harder when you learn that some of those children lost their battles…children who both Liam and I knew and played with in the Sloan playroom. It has left me, at times, wondering if this is all a big joke that’s being played on us parents because no one survives. But then I think about Simon and Samantha, two long-term survivors, and I regain my sense of balance. It’s also hard to not feel numb. Last week as I was getting into a cab to go to a meeting, I slid on the freshly Armoralled seat. As I was sliding, my right foot jammed into the underside of the front seat, caught a piece of metal and ripped of my big toe nail. At first I thought I had just cracked the toe nail, but as I was wiping away the blood I realized what had happened. I asked the cab driver if he had a napkin. He handed me a roll of paper towel. I squeezed my toe with a makeshift tourniquet to get it to stop bleeding. It did. Sort of. Every few minutes I’d have to wipe away this blister-fluid-like substance oozing from my toe. But I went to my meeting and didn’t even mention the incidence. A few days later I visited a doctor to make sure all was OK. He looked at me in disbelief when I told him the story. He couldn’t believe I went to my meeting and proceeded to recount stories of people in excruciating pain after doing the same thing. And I explained that when you’ve been through what I’ve been through with Liam since February 26th, you just become sort of numb to pain. So I’m numb. But today I can write. Today as I was getting into the elevator at Sloan to take Liam for a blood draw to see if he can progress to the fourth round of 3F8 treatment, I met a mother who was also bringing her son upstairs. We met crouched down while she helped me pick up the mess of French fries and ketchup that Liam spilled in the very crowded elevator. We talked as we walked off the elevator, quickly discerned that we were on the same cancer “team,” and she told me that her son was on his 13th and final round of 3F8 and is 2 ½ years out from his diagnosis. He’s doing great. I needed to meet her. I really needed to meet her. She then took me to meet another friend whose son is also 2+ years out and is also doing great. I needed to meet her too. The moms looked happy and relaxed, not anxious and scared which is the normal look of an adult in the Pediatric Day Hospital. One mom recently lost 75 pounds and explained that after focusing so intently on her son for the past 2+ years, it was time for her. And they told me about other moms of children with neuroblastoma who have reached the 2+ year anniversary and are doing well. While this revival was going on, Liam was off in the playroom with two volunteers playing with Play Doh that he decorated with glitter, and making a very long tail of string that he decorated with pom poms on the end and attached to the back of his shorts. The person who has been with us since the beginning, Teres (the director of the child life program), was there to help Liam in his quest to make the perfect tail. He was perfectly happy to be without me, but I could see him keeping a close eye on me. That was the good part of my day. The aggravating part was an unnecessary 3-hour wait for a blood draw that takes less than five minutes, a testy conversation with one of Liam’s “Emily” nurses as I tried to explain my frustration on her deaf ears and was met with an “I can’t please everyone” disclaimer, and having to hold Liam still as he cried in pain and fear as a needle was inserted into a vain in his arm and three tubes of blood were drawn. But how did Liam handle it? After he finished crying and allowed me to put him in his stroller, he looked at me and said he was “almost happy” but that it “hurt when it was going in.” And about five minutes later he announced, “Mommy – I’m happy now.” I’ve wanted to write and have a draft of an update I’ve been working on for weeks, but my fear overcomes me that talking about how well Liam seems to be doing will anger to Gods of Good Health and it will all turn against us. All of the sudden I got scared to write and, to be honest, I’m still scared but I don’t want our silence to frighten anyone. I think I’ll be scared until next Tuesday evening when we find out if Liam can progress to the fourth round of 3F8 treatment. And then, I’ll be scared until we hit that two year mark…and then scared until we hit the five year mark. But in the midst of all this fear, we try and stay in our little bubble of living a normal life. It takes an inordinate amount of energy to stay focused on the present. It takes an inordinate amount of support from our extended family, our friends with the unwavering support, to keep it all together. I still believe in the deepest recesses of my soul that Liam will conquer cancer and I’ll be a veteran cancer mom encouraging and inspiring a junior cancer mom to hang in there. But until we get through an MIBG and CT scan next week, a fourth round of 3F8, a four-hour urine collection, and bone marrow tests on 9/21, I want to be quiet. We’re so close and I just don’t want to rock the boat and stir up the angry waters. We very, very much need our support network to stick in there with us.
