The hardest parts of the phase are three fold. First, he gets a lot of chemo, and I mean A LOT of chemo all at once. And he gets some really nasty chemo in that mix. We are only a week in, and he is already neutropenic. That means that we are pretty much stuck in the house, limited visitors and will likely end up hospitalized in the next week or two. Second, he is on high, high dose steroids. When I tell you it is a high dose, I mean it is a higher dose than my adult brain tumor patients took (back in the day when I worked in neuro) and he is less than 30 lbs. Within hours of the first dose, Nico has trouble coordinating his walk, loses impulse control (and he is kind of a control freak so this distresses him greatly), and is just generally miserable. Then add to that the chemo that causes neuropathy and he wants to be carried from room to room because walking is just too difficult. Then add to that the chemo that causes heart damage and makes him throw up, and you get the picture. Oh and PS – that’s not even all the chemo. Third, Nico’s allergy to one of the main chemo drugs means that he gets twelve shots this phase (6 for every 1 IV dose missed) and these are not your garden-variety injections. They hurt badly. When we walked into the infusion area of clinic on Monday, I heard a blood-curdling scream and knew that the little girl behind the curtain was getting one. Sure enough, a few minutes later she appears with the tell tale sign – a bandage right in the middle of her bruised thighs. They give the shots on Monday, Wednesday and Friday and you can imagine how number 6 feels on a 27 lb frame. Nico is starting to talk more and more, so he told the nurse before we left on Wednesday, “My leg was really scared. That shot hurts really bad. And I was really crying!”
So back to my opener, the first day of these wretched shots that require we sit in clinic all afternoon three days a week, started out like this: Nico and I got to a very busy, very packed clinic. There were two little girls, just a little older than Nico, both with the same diagnosis, playing together. He played near them, and that’s about as much contact as he has had with other kids in months. He seemed pretty content by this. Plus, I got to talk to two other parents and we all got to commiserate. That is probably why the wait did not irritate me until we hit the two-hour mark. We did not know if we even had a nurse, or if anyone had even called for the chemo. So I started to get antsy, and maybe this made his nurse antsy? I do not know. But what I do know is that when the shot arrived, Nico was sitting on my lap (where he always sits for chemo because he is afraid) and somehow the chemo ended up soaking through my pant legs and onto my skin rather than in his thigh. FYI, one injection of the 6-injection course of this drug, for Nico’s size, costs approximately $20,000. I am not exaggerating. So about $3,000 worth of chemo was wasted. I am not going to speculate about what happened, but my first concern was that my son did not get all his chemo, and we want him to get every last drop of this stuff. You get one bite at the frontline apple, then you are to maintenance and you just hope that it was enough to kill every last blast cell in his body. Unfortunately, our doctor was out of town and the doctor in the clinic that day is not what I call a rock star. We had a bad experience with her before and to sum it up: if you are not her patient, she does not give two cents about you. Period. So, no doctor actually spoke to us about what happened, but the above-mentioned doctor, instead relayed through the nurse (and this is a quote for real) “It’s no big deal. He gets plenty of chemo.” Say what?! So he needs six injections for every one missed IV dose unless we spill a dose and then he only needs five?! I texted Jeff to tell him what happened and he responded, “So Nico was stabbed and you got a dose of chemo?” That pretty much summed up the day, never mind that the nurses administer this stuff in a modified hazmat suit and I sat with it all over my skin for 15 minutes (when they got a pair of scrubs for me to wear) and don’t forget that all this fun took over three hours.
On Wednesday when we returned to clinic, Nico was supposed to receive his weekly IV chemo, plus another one of these shots. On the days you get IV chemo, generally an oncologist also sees you. But our doctor was still out of town, so Jeff came with me to clinic to get an actual answer from a doctor and to watch the nurse doing the injection (since I cannot while holding Nico). Of course, because this kind of stuff happens to us whenever our primary oncologist is out of town, the front desk told us that we were not scheduled to receive chemo, and we were not being seen by a doctor. There is a long story about how this screw up happened, but it was another screw up on their part. I think by this point Jeff and I were just exuding contempt. I was actually close to crying out of frustration and all the veins in Jeff’s neck were standing out. That is when we spotted our 2nd favorite doctor in the hall (who we never seen in clinic usually, only when we are in-patient). I told the front desk person (nicely) that we HAD to see a doctor and we HAD to get chemo today and I added that it would be a very good thing if we could see a doctor that we trust and suggested the one in the hall.
Well, the story ends pretty well. The doctor agreed to take time out of his busy day and see us. He acted like he had all the time in the world, and I am sure he did not by the way his pager was going off. He spent over 30 minutes talking to us about what happened. There is a margin of error in the regimen that allows for skipped doses. The protocol is written to give as much as is tolerated, while not creating too much toxicity. The doctor was confidant that Nico got at least some of the dose because the nurse insists that she saw the skin on his thigh bleb. He thinks there is more danger in potentially giving him too much than not enough. It was a lengthy explanation and one that satisfied us although it does still make me nervous. The clinic also gave us one of our favorite nurses that day. We don’t know if that was just luck or because we ended up breaking down in front of the Child Life Specialist. But I felt like the universe knew that we needed a small break and luckily we got two (a great doctor and a great nurse). You have to remember, we are worried almost all the time, the process itself is incredibly stressful, and watching your child suffer is unbearable. But on top of that, when Nico is on steroids, no one in the house sleeps. He wakes up all night long and even though he is exhausted, sleep just does not happen. All of these things combined just make you unable to control your emotions, and pretty much nuts.
I have been reading more of the other clinic moms’ blogs, and I have to say that they seem to be a lot more positive than me! I really am trying. I blame the fact that Nico is higher risk than most of the kids in the other blogs. He gets a lot more chemo than they do. I would not say that I am jealous of them, but we take twice the steroids, we take three times the doxo (heart damaging chemo), we take more of everything, and you can see the difference when you look at our kids. Nico is having a very hard time this round. Today, I decided to start reading to Nico a particular book that we used earlier in treatment called “Chemo to the Rescue.” I thought he might need a refresher since he is getting the painful shots again. There is a part of the book that made me cry today (maybe I was the one that needed a refresher). I kept my voice steady, but tears were streaming down my face. Nico stopped and yelled in a slightly distressed voice, “You are crying!” I did not know how to respond. Nico has never called me out for crying before. I just told him that I knew that he did not like taking the medicine, and that I did not like making him unhappy. But the medicine was making his blood strong, so we had to keep taking it for now even though it was hard and made us sad sometimes. I have no idea what he understood. But here’s the part of the story and how I will end.
I’m high, I’m low
I’m going through chemo.
No easy fight I know,
But I’m a superhero!
We’ll make things right,
With chemo day and night.
Watch chemo zap it down,
And turn my life around!
Against my will,
I take another pill.
It’s going to take some time,
Before I’m feeling fine.
Be brave! Be strong!
And take away what’s wrong.
It’s going to be alright.
The future’s looking bright!
(CHEMO to the rescue! A children’s book about leukemia)