I normally blog as a narrative, but with all the details of what’s going on, I thought it may be worth laying out some more details in a more expository fashion. It’s outside my comfort zone. That is for sure. But I have also been looking around the internets for this information- another mom who has gone before and blogged the journey- and can’t seem to find it. It could be that the google monster just won’t give me the search results, but I figure I’ll write our story, and someday another nervous mama may read it and find some solid footing.
To be real clear from the get go. This is Beaudin’s treatment. Even 9 days in I can 150% guarantee you that this WILL NOT BE anyone else’s treatment. I am not a doctor and don’t pretend to play one on the internet, so for the love of logic!, please ask your real-life doctor about anything that matters.
Ok, so, Leukemia is a cancer of the blood. To be precise, we are talking about acute lymphoblastic leukemia, A.L.L
Wait. Recall above when I mentioned I am not a doctor? This is like ‘Leukemia for Dummys’ or rather, ‘Leukemia for Mom’s who just got told their kid has it. For moms by moms.’ Rolls right off the tounge. Alternative title could be ‘Leukemia for the grandma who just got a call from the mom of the kid newly diagnosed and is now searching google frantically for answers”.
Ok, blood is made up of red blood cells and white blood cells. The white blood cells have a couple different types:
Lymphocites and Neutrophils. (…and actually there are monocytes, basophils and eosinophils, but they don’t matter for this exact conversation so forget I mentioned them.) The real one that you hear all about in Leukemia is Neutrophils. Those are the cells that provide defense against bacteria. Often, no.. always, during treatment the Neutrophils drop low and as such the patient has no protection against bacteria. Crazy bacteria, but also simple bacteria. Bacteria that healthy people don’t even notice their body “fighting”, can take someone with Leukemia out. Neutrophils are reported on a blood test a couple of ways, but the one you will hear most often is ANC.
Alright, let’s begin.
High Level Overview of Month 1- Induction
The first month of treatment is called induction and is 29 days long. Generally, outside of the zillion variables, 29 days. When a kid is diagnosed with A.L.L, they have around 1,000,000,000 Leukemia cells in their body, so during induction chemo is started to exterminate the vast majority. At Day 29, 95% of kids have less than .01% left and are considered in remission. Treatment continues bc often the Leukemia cells that make up the .01% are real persistent little jerks and must be treated as such.
During the 29 days, Beau will receive 4 doses of Vincristine Chemo. He will receive 1 dose of Pegaspargase Chemo. He will receive four intrathecal Methotrexate doses- that’s fancy talk for chemo in his spinal fluid via a lumbar puncture. And then, finally, daily doses of steroids. Oh, and a weekly antibiotic to protect from a dangerous pneumonia that Leukemia leaves him highly susceptible to. The 29 days are bookended with bone marrow biopsies. The theory is that you receive Day 1-4 inpatient, then return home and receive the rest of the 29 days in the outpatient clinic, coming twice weekly.
In theory because you also have to avoid getting a fever at any point which takes you immediately back to the hospital. We got a fever on Day 7 and are now back inpatient indefinitely.
Induction Day 9 Update:
Days 1-4 were relatively uneventful. I think you imagine “chemo” to be this big marked event, but really the only difference was the nurse administered something in to his port and instead of letting him help, she did it herself and wore protective glasses. The Vincristine is a push, meaning it takes about 10 seconds. The Pegaspargase (Peg) is a drip and runs over around 2 hours. The steroid: two tiny pills, twice daily. We went home on Day 4 after the Peg was administered and everything felt fine. A couple of stray hairs had fallen from his head and by his own urging, we shaved his head when we got home.
Beau generally acted more tired than normal, but still got up and moved about the house. He spent more time resting on the couch and both days took a 3 hour nap in the afternoon. He had to pee a lot, had an average appetite as far as quantity, but craved eggs.
This is only odd bc I have been fighting Beaudin for… well, let’s see…he is 6.5…. so, for 5 years… to eat eggs. On Day 6, he ate 5.
On the morning of Day 7, we woke to him having a fever of 101.2, came to the hospital and found out he had contracted MSSA (basically, a staph infection) so we were admitted indefinitely.
At our hospital, if you come in with a fever you are given IV antibiotics immediately and admitted. If your blood cultures come back negative (meaning no bacteria is growing in your blood) you can go home once fevers have resolved, and your ANC reaches 100. If you have a positive blood culture, like Beau did, you stay inpatient until fevers resolve, and your ANC reaches 200. This can take days, but most often takes weeks.
In summary, none of this can be summarized. Week one is unstable and ever-changing. A mix of grief and panic, peace and education. I’ve learned more in the last week then I have learned in the last 5 years and still find myself asking our nurse the same question over and over. The one thing I know for certain is to hold lightly to all plans and trust that, one baby step at a time, you will find yourself moving forward.