A Week that has left me Weak.
I can’t even begin to explain how hard this week has been. Liam turned 4 ½ on Thursday. He spent the day undergoing the fourth day in a row of a very intense antibody treatment intended to give him life but left him limp and with little life in him. Like the last round, he spent the week curled up in a fetal position; whining “Mommy – I want you” if I stepped away from him; clutching me with both hands wrapped around my neck when going through the super painful part of the treatment and commanding me not to move; not talking except to cry “I don’t want Ella close to me”; gingerly sliding him into and out of a cab on the way to/from the Upper East Side; not eating…at all…; throwing up green, vile smelling bile with such force it flew out his nose; refusing to take yet another “pillow” (pill) for either pain, prevention of nausea, antibiotics left over from the infection that wasn’t but that we were still taking precautions to treat just to be certain, or to prevent a fever…but always in the end obliging and swallowing up to two pills at a time; and crying in pain and discomfort beginning Monday afternoon. It has been heart-wrenching. And on Monday we had a bit of a scare when Liam’s body reacted on day one to the onset of a high dose of antibodies coursing through his body combined with the narcotics intended to shield the pain with a low blood oxygen rate and extremely high heart rate. It was one of those hand-shaking-uncontrollably moments when you and a nurse realize something is very wrong, hear your voice say to the nurse you know so well, “Cat? Cat! Cat? Now, Cat, Now! Cat, Now!” as you watch her quickly go into emergency mode as she assembles an oxygen mask and places it over Liam’s limp head being cradled in the crux of my arm with his equally limp body sprawled across me, and seeing her press the red emergency button that just two weeks ago Liam was mischievously threatening to push to see what would happen. Watching a swarm of doctors, nurse practioners and nurses descend into the small treatment room on an unresponsive Liam yelling things like “how much Narcan (a drug used to reverse the effects of narcotics) did he get and when,” “he has a pulse!” and “Breathe, Liam, Breathe! Breathe, Liam, Breathe!” Watching a wet spot spread across his jeans as his body lost control. Noticing the “crash cart” used only in emergencies positioned outside treatment room nine where we were located. Watching him throw up and smelling the pretzels he had eaten handfuls of a few hours earlier in the contents violently expelled from his stomach. Calling Larry with a trembling voice to say, “Get here now!” but not being to explain what was happening because the vice grip on my throat prevented me from saying anything else. And gratefully seeing the numbers on the monitors returning to normal ranges. I don’t want to do that again.
On Thursday, November 13th, I had a conversation with a mother whose son was being treated next door in room number eight. She was from Barcelona and was in the tiny room that was separated from ours by a wall that went ¾ of the way up with a curtain as a door. I had heard her talking during the week and noticed a certain level of stress in her voice. I know the sound. I recognized it as one I’ve heard in my own voice, as hard as I try to hide it. She was in the room with her son who was undergoing antibody treatment and was sleeping off the pain of the treatment courtesy of “comfy” medicine, and her younger son who was totally cute and completely oblivious as to the significance of his surroundings. I said hi and she embarrassingly looked at me and said something in Spanish that indicated she spoke no English. We tried anyway to communicate. It was her son’s second round of antibodies. He was seven. He was diagnosed in February 2008, exactly a year after Liam. He had undergone bone marrow transplant. They flew back and forth to Barcelona between treatments. Her younger son 2. She was staying at the Ronald McDonald House, where so many families who come to Memorial Sloan-Kettering from out of town and out of the country stay. I gave her my e-mail address and told her to write to me when she was next coming back so that I could help her any way I can. And then something that rarely happens to me happened. I looked at her and felt tears welling up in my eyes. She saw and we hugged and cried. She talked. I had no idea what she was saying but it didn’t matter. I wanted to take her pain away. I didn’t want to meet her under these circumstances. I wanted the pain for both of us to go away.
We’re now in New Jersey. It’s early Saturday morning or late Friday night depending on how you look at a clock. Liam hasn’t walked more than five steps since Monday afternoon and hasn’t eaten since Monday, but he did smile twice tonight. We are so eager to see him emerge from his stupor. We want him back. We need him back. We miss our baby boy. Ella misses her brother. We can’t wait to laugh with him and watch him be a little boy. Yet we are so grateful to have the opportunity to receive this treatment which is a few streets away from us. We could be flying here from Spain instead of taking a 10 minute cab ride. And for that, we are so very fortunate.