True to my word, I'll tell you about 3f8. George and I have mulled the idea of this treatment for a while now. There was a time when we thought it would only be done if we went into remission and the cancer came back. We now recognize the importance of doing this treatment now. So many families wait until it is too late and we refuse to make that mistake. (There is a test we will have to do every time we do the treatment to ensure Clayton is cleared for the treatment. The possibility of failing that would be the only thing standing in our way.
We will learn more later, but from what I understand right now, the infusion is given over a 30 minute time period every day for five days. That will happen roughly one week a month for about four months. Then I think we do it one week every two months for eight months. Again I am not positive on those details, but the doctors will give us that information when we see them. 3f8 is an antibody treatment derived from mouse antibodies. The antibodies are given through and infusion. Once inside the body, they seek out neuroblastoma cells and destroy them. Meanwhile, the body's cells seek out the antibodies to destroy them. This cycle essentially "teaches" the body's cell to seek out and destroy any neuroblastoma cells. The beauty of this treatment is that it seeks to destroy any lingering neuroblastoma cells without any long term side effects, but because neuroblastoma cells are immature nerve cells, the side effect of these cells being destroyed in pain.
That is what no one wants to hear. It is what will break people's hearts. It breaks our hearts. The idea of having to put our child through pain comparable to child birth in unimaginable and unfortunately necessary for his well being. Everyday leading up to this treatment will be torture. I have no doubt that I will question myself, and cry and hate myself in so many ways for what I am having to do, but I will always know at the end of the day that it is the right thing to do. And if I ever forget that I can look back at this post, or talk with the other mother's who have had to make this same torturous decision and are grateful they did. It is his best chance at the life he deserves.
That said, I have yet to go through the experience myself, so I will let you read the words of a couple of parents who have. Keeping in mind that each child's experience is different. I have heard that everyday of infusion is different. The pain is never quite the same. Some days more and some less.
Here are some excerpts from some other parents who have done it...
-"3f8 is just as intense as the cancer it fights. You pay for what you get. ____ paid today with 15 minutes of the most intense pain I have ever witnessed. Her eyes rolled back and she writhed in pain. She required two pain rescues. This stuff is so intense it hampers children's ability to breathe. I am now happy to know ____ does not have a choice in this matter, I am certain she would stop. We are back at the Ronald McDonald house and she is sleeping it off. Everyone has assured us it gets better, it has to, not many living things could bear that. What a brave little girl. We love her so much and stick to our guns with the knowledge this is another part of the whole treatment of the filthy, useless disease called Neuroblastoma."
this mother told me it DOES get better!
-"3F8s is tough and not quite the way it was described. In some ways, it's better. In others, it is much, much, much worse. It's definitely long days...One thing it is is all consuming and very difficult to watch...All he says to us as he endures the pain is, "I'm not comfy." He doesn't cry. He doesn't yell. He just whimpers and tells us over and over that he's not comfy. He won't take any pain medication when we're at home which makes the evenings difficult. The biggest differential between our perception of 3F8 and reality is that the pain lasts all day and all night. Yes, the super intense pain doesn't last more than 30 minutes but the pain doesn't go away after that 30 minutes which is what I thought. The side effects from the heavy doses of narcotics (he's on something that is 3xs more powerful than morphine) makes him very unsteady on his feet and extremely restless at night. But even through pain and drug haze, his personality comes through."
" I’m not even sure I know where to begin. What kept coming to mind as ____ was going through the height of pain during the infusion of 3F8 was labor. I felt like ____ was going through labor every day, for five days in a row. Our job was to do everything we could to comfort ____ 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 ____ 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 ____ 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 ____’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 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 ____ 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. ____ 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.
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... 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 ____ doesn’t remember the pain. On Wednesday morning, we arrived at the hospital and ____ 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, ____ 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. "
I am being brutally honest about this so you all know. The way I like to know. I'm not big on sugar coating. What will come will come and we'll deal with it then, but for now we are just going to enjoy our little-man!
No comments:
Post a Comment