I’m not even sure I know where to begin. What kept coming to mind as Liam was going through the height of pain during the infusion of 3F8 was labor. I felt like Liam was going through labor every day, for five days in a row. Our job was to do everything we could to comfort Prince Liam as he struggled through the intense pain. And just like there are some women who go through labor saying very little while others are quite expressive, there are some children like Liam who are quiet as they deal with the searing pain while others scream so loud that it shakes the core of your soul. The screams are the kind you hear when watching a horror movie…shear terror. How can this be happening? What wrong turn did I take that we find ourselves here? But then I have to remember that I’m at the only place in the world that this treatment is available. And there is only enough to treat 100 – 200 kids a year, since it’s not in mass production. Scratch the thought of a wrong turn. We took a right turn to be here.
The first day of 3F8 treatment was the worst. It was the day we needed to figure out how much pain medication to give Liam to relieve as much of pain as possible without giving him more narcotics than his little body could handle. It was the day we needed to see Liam’s reaction to the treatment - would he be a thrasher and screamer, would he be angry and belligerent, would he be a child who would hold his breath causing other kinds of complications, or would he be inconsolable? We had no idea what to expect. The process started early Monday morning with a finger stick – the first time he has had to have blood taken this way and it was as bad as I thought it would be. We tried a little play acting – I had my finger pricked first. And then it was Liam’s turn. He wasn’t buying it. He fought it the entire time to the point that it took me and two nurses to keep him still enough to get a test tube worth of blood from him. The entire time Liam has been in treatment, I have managed to avoid having to go through a finger stick. Most kids have blood drawn that way – not through one of the tubes in the line – but I have always just known that it was going to be something that Liam would not do well with…at all. And I was right. Blood taken directly from a finger gives a more accurate reading then blood taken from a line. And when you’re about to begin 3F8 treatment, the reading of the blood needs to be as accurate as possible. But boy…it really wasn’t a pretty sight. So, the nerves were shot right out of the box and it wasn’t even 8 a.m.
The typical Monday traffic jam at the Day Hospital was in full force and we actually didn’t get the infusion started until 1 p.m. (And why did we need to arrive at 7:30 a.m.?) We finally got started by first pre-medicating Liam with some anti-nausea/hives medication (one of the side effects of 3F8 is hives) and a dose of narcotics. And then it was time to start the 3F8s. We had a team of people in the small room – a nurse practioner who deals only with children receiving 3F8s, a nurse, and someone from dance therapy who has worked on a protocol for helping children cope while receiving 3F8s. The room is a small rectangle - about the width of two single hospital beds. There’s a curtain for a door, a wall of windows on one side, a smoked glass wall on the other, and no ceiling. They’re nice but not very private. Liam had fallen asleep from the pre-medications and we waited and hoped he might somehow miraculously sleep through the entire event. Exactly ten minutes into the 30 minute infusion he woke up and kept telling us, “I’m not comfy. I’m not comfy.” And then he wanted to be held – chest to my chest – in a fetal position and then kept trying to find a comfortable position. But he couldn’t. He didn’t cry. Didn’t scream. Didn’t ask what was happening. He just kept telling us he wasn’t comfy. And then the real pain started and his little body would become straight and rigid as the pain centered on his stomach area. And as I was holding his head in my hand to prevent it from falling back, I could see him trying to deal with the pain. The nurses watched his heart rate and timed the amount of time between rescue doses in order to know when to give him another. I rocked him, Daddy rubbed hot packs on his body, I sang a chant to him over and over again of “Almost Done…Almost Done…Almost Done…Almost Done.” And eventually when I couldn’t sing any more because I had too many tears in my voice, I hummed “Rain Rain, Go Away.” Eventually he fell asleep. And as soon as he fell asleep, the team of people with us moved on to the next child. As he slept, we had to keep an eye on his oxygen saturation levels and heart rate. When they dipped below the target number, we’d have to wake him up and tell him to take deep breaths. He kept whimpering as he slept and we could see his heart rate going up when he was having another wave of pain. When he finally woke up, he threw up. And then he threw up again. And again. And again.
Right before we were about to leave the hospital, he had a temperature of 38…which equals a high temperature in the land of cancer. But his temp in the other ear was still normal. We waited 15 minutes. It went away. We left. After an hour at home, Liam’s temperature was back and not going away. So back we went to the hospital to the emergency room for a dose of antibiotics, have blood cultures drawn, receive another does of pain medication since he wouldn’t take any orally at home, and some anti-nausea medication. So, day one was a 15 hour day with a long night of Liam wanting to do nothing but be held.
What surprised us was how much pain he continued to have in the evenings. We thought it was 30 minutes of pain and then back to normal. The closer we got to the first day of 3F8s, the more we started to hear talk about the residual pain. Wait – what residual pain? And when we actually embarked on the 3F8 freefall, we found out that it was more involved.
Days 2 – 5 were equally as difficult but at least without a trip to the ER. We still had to give him an injection of GMCSF – the medicine that increases production of “killer” white blood cells – every morning which was definitely not highlight of our day. The difference was we figured out the right amount of pain medication to give him to relieve his pain but not make him so sleepy that he had lingering narcotic effects. By day three, he was finally saying, “This hurts. It really, really hurts.” But he never screamed and never cried, just kept telling us he wasn’t comfy. And every morning just as he was feeling himself, we’d have to bring him back to the hospital for another round. But if it gives us our son for the next 80+ years, we can deal with it. He doesn’t remember a thing. It’s us who will never erase the sounds of the screams from our memory. Here’s proof that Liam doesn’t remember the pain. On Wednesday morning, we arrived at the hospital and Liam was waiting for the day to begin. He was sitting on the bed, swinging his legs off the side, and singing, “Oh Mr. Sun, Sun, Mr. Mr. Sun, Please Shine Down on Me.” In his sweet, innocent voice he kept singing his version of the song, with two Misters in the middle, over and over. And on Thursday morning, Liam was standing in a group with three older boys all in various stages of treatment being entertained by his favorite clowns. As all the boys jumped in excitement watching the clowns, who by now are old friends, I had a hard time reconciling how something is trying to take away these sweet, precious children when all they want to do is live, love and laugh.
One of the nurse practioners gave me an explanation of 3F8 that was simple enough for my brain to understand. The beginning of Liam’s treatment was similar to cleaning a car. When you first clean the inside of a car, you use the big industrial vacuum that can get out almost anything. Our big vacuum was chemo and surgery. Now we’re onto the detail part. We can’t see any more cancer cells, but we know they’re there. So, we’re using the precision tools – radiation and 3F8s. 3F8s go into Liam’s system…search for cancer cells….find them…and put a Post-it on them. The GMCSF injections stimulate production of the killer white blood cells so there are more of them to search for the Post-its and then do their job. One of the interesting things is that the Post-its never go away. The cancer cells are always marked so eventually, as the theory goes, they’ll be found and destroyed. And eventually Liam’s body, through 3F8 treatment, will learn how to recognize the cancer cells and kill them. 3F8s have been around for 21 years. For 21 years the team at Sloan has been tweaking the dosage in an effort to perfect it. It’s what’s called a Phase II clinical trial. How can something still be in a clinical trial phase if it’s in its 21st year? In order to take it to Phase III, it would mean needing to randomize it…some patients would receive it and some wouldn’t. That’s a proposition that the doctors at Sloan don’t want to make. Can you imagine if your child was one who wasn’t receiving the 3F8? Can you imagine having to make the decision of who would and who wouldn’t receive it?
Earlier in the week, Liam wanted to visit Reece, one of his favorite nurses who works in the Pediatric ICU at Sloan. We walked into the three-bed unit excited to see Reece. Instead, I was once again reminded that a lot of kids don’t make it. A family who doesn’t live in the area was visiting Sloan to thank them for their efforts in trying to save their son. Liam ran to Reece, and I tried to avoid looking at the family. I couldn’t look at them. I couldn’t see the pain in their faces. It hurt too much. But my peripheral vision wouldn’t keep my blinders on. I could hear the mom crying and see her showing off a t-shirt emblazoned with her son’s birth and death date and a smiling picture of him. Remind me again why cancer research funds have been flat the last three years for childrens cancer? Is it because we think that this mother could handle the pain of losing her son? Later in the day, Reece stopped in to see how Liam dealt with his first day of 3F8 treatment. I asked her about the family. She knew why I was asking. She immediately said, “Gretchen – He didn’t have your kind of cancer and he wasn’t treated here first. He came from somewhere else.” That’s the thing about Sloan…a lot of patients come from somewhere else. And when they come from somewhere else, it’s not always so good. We still have a long way to go. We’re still not out of the woods. We’re still running an ultra marathon. We have to get him through the next 24 months before we can cut back to half marathons…but we’ll never be able to stop running.