Nico takes a chemo every single day that is called 6MP. We get it in a liquid now, but if Nico learns to swallow pills we will go that route. As of now, Jeff has perfected squirting it into the side of Nico’s mouth while he is sleeping. He never wakes, and does not even know he takes it. The only issue that we have had in the past is that it does make him nauseated and he wakes up some nights to throw up a few hours after getting it. Our oncologist said that most kids adjust to the initial nausea.
Nico takes Methotrexate once a week by mouth. The dose of these drugs is determined by weight. Right now, he takes 4.5 tablets at one time, once a week. Methotrexate is also what they inject into his cerebrospinal fluid during lumbar punctures. He will still need to get 2 lumbar punctures every 3 months (the 3 month increments are referred to as cycles). He gets sedation for these, and since they started using Versed and Ketamine for sedation, he does very well and does not remember a thing (thank goodness).
Nico will take Prednisone twice a day for 5 days every month. I am dreading this. He reacted pretty badly to Decadron (a different steroid) in the past. He has no impulse control and gets very violent on Decadron. He is also generally miserable – angry and sad. Some of the other parents report that their kids do a little better on Prednisone than they did on Decadron, and I hope this is the case for us. Only the high-risk kids switch steroids during maintenance. The average-risk kids stay on Decadron. In average-risk kids, Decadron has been shown superior in treating leukemia. But the risk of developing a very nasty condition called avascular necrosis (AVN) is much higher with Decadron. Since studies have not proven that Decadron is superior for high-risk kids (because we get a lot more front line chemo), Children’s Oncology Group takes the position that it is not worth the risk of AVN. So Prednisone it is. We started that tonight, and I am very motivated to teach Nico to swallow pills because it clearly tastes very badly.
Nico will get Vincristine once a month intravenously (through his port) in clinic. This is a staple in treating leukemia, so I love this drug, but I hate this drug. It causes neuropathy, and Nico has pain after he has it. It becomes obvious because he starts to walk on his tiptoes, which is a red flag for neuropathy. We do special exercises with him and bought him a pair of high-tops to prevent him from walking on his tiptoes. We keep a close eye on him.
Nico has taken this antibiotic twice a day, every Monday and Tuesday since diagnosis. The Septra is meant to prevent a specific type of pneumonia to which immunocompromised people are especially susceptible. He does not seem to mind taking this stuff (it tastes OK), but the draw back is that it can cause neutropenia (low white blood cells). The chemotherapy agents are titrated based on neutropenia, so if a child is sensitive to Septra, you could end up lowering chemo when it was really the Septra causing counts to crash. These kids need to get as much chemo as they can tolerate. So I am watching! I have thought that Nico is sensitive to Septra for a long time, and I have brought it up to the doctors more than once. They said they would consider the Septra a potential problem depending on how he does in this phase. The problem is that the alternatives to Septra have their own issues. So we shall see.
In addition to the above, we have all our as-needed medications – Oxycodone for pain, which he gets from Vincristine and from steroids; Zofran for nausea, which he gets from 6MP; Zantac for heartburn that he gets from the steroids; and Miralax because the Vincristine makes people constipated.
It is a lot of damn drugs. But the doctors and nurses tell us that this will become old hat. I hope so because it is for three more years.
The friends that we made throughout this process hit maintenance before us because we had a lot of delays. Maintenance has not looked easy so far. Apparently, the beginning has a lot of bumps. I will explain it the way the oncologist told it today. They want to start all these medications and then give the kids’ bodies time to adjust around them. The idea is to titrate the medications based on blood counts, but the hope is that they can stay on these starting doses. So they do not want to check the blood too often for fear of titrating too quickly. So they won’t check Nico again for another month unless he gets a fever. Basically, we are going to give him chemo for a month, and if it crashes his counts, we won’t know until he is symptomatic. In the interim, we are supposed to let him live normally (go to school, hang out on playgrounds, do normal kids stuff). I am not going to lie – it makes me nervous. I am going to comply, but I am anxious about it. I wish you could check neutrophil counts at home the way people check blood sugars. But I understand the rationale for not checking (but I still wish I could!). So, fingers crossed.
We did speak with the oncologist today (not our primary, but one that we like) about Nico’s knee. He did suggest the possibility of AVN, but for right now we are just going to watch it. If he is still having pain in a couple of months, they will want to do an MRI under sedation. Hopefully, the pain goes away and stays gone.
I actually have a lot to post regarding some stuff that is going on with Make-A-Wish, but this post is already too long. The picture I am attaching is from a Make-A-Wish event (Prince and Princess Tea Party). I will try to update about it over the weekend because it was really cool.
Love to you.