Diagnosis, prognosis, and treatment

We’ve gotten a lot of questions around what, exactly, Wes’ diagnosis is, what the treatments look like, and what his chances are for recovery and return to health. I’m going to try to summarize what we know, as best as I can, though understanding that all of this is dynamic and subject to change.

Diagnosis

Last week, Wesley was definitively diagnosed with B-cell acute lymphoblastic leukemia, often just called A.L.L. or simply leukemia. There are many excellent articles summarizing what this condition is, the symptoms and effects, but it’s basically what you’ve always heard of as childhood leukemia.

Wes was not showing any  really worrying symptoms; the only external sign was small petechiae on his butt – perhaps a few dozen small red dots which could have been easily overlooked as a minor diaper rash or allergic reaction to clothes or anything else. 

During the diagnosis, one of the most important tests looked for signs of leukemia in his spinal fluid, which would have been a sign that the cancer had already crossed into the nervous system, a significant complication. We were deeply relieved to find it had not.

Prognosis

Fundamentally, Wesley’s prognosis is excellent. Overall, there’s a roughly 90% cure rate with treatment, and Wes is positioned well – it was caught early, he’s towards the very young end of the spectrum, had no leukemia in his cerebral spinal fluid, has had no damage to his vital systems, and is overall quite healthy.

The word “cure” is dicey for cancers, but the standard for A.L.L. is to consider it cured if there’s been ten years of remission. 98% of children treated go into remission, and 90% of those (89.2% overall) will eventually be considered cured.

Treatment

The treatment is complex and we won’t really have a complete idea of what to expect for the entire future, but here’s what we know today.

The first month of treatment involves daily medications at home on a fairly complex schedule, to treat a variety of symptoms caused both by the cancer as well as by the chemotherapy. Chemo is done in a hospital or clinic, and involves one or more of several chemo drugs, provided through the port installed in his chest, roughly twice a week. There will be at least two chemo injections into his spine during this phase, which will require sedation. He’ll also likely receive regular blood transfusions to provide needed platelets. At the end of this first month cycle, the expectation is to have reduced his leukemia count by something like 99.98% to where they can call it remission.

Once he’s in remission, then we enter phase two, and eventually phase three. This mostly means tapering the medications and chemo off over roughly three years, until we can consider it gone and then just enter a monitoring phase where we keep an eye on it until the ten year mark.

The treatment will be rough on him, particularly over this next year. He’ll lose his hair, but most worryingly he will have a severely compromised immune system and will be unable to have any vaccines for at least 3 years – one of our main battles will be to help him avoid infections from contact with contaminants, sick kids, just about anything, while still allowing him to be a kid. Even a minor fever will send him to the hospital and common childhood bugs, from colds and flu to chicken pox can be disastrous. As with most chemo treatments, he’ll also struggle to keep his weight up, let alone grow and gain weight as he should be at this age, so his diet will be skewed towards good protein and easy calories and fat; if he will only drink milkshakes for breakfast then, damnit, that’s what he’ll have.

This is a broad generalization – there’s a lot more information, but I think it’s enough to help you understand what we are facing. We’ve made it clear to our oncology team that while we want to know everything, we are 100% in their hands and will follow their orders. The survivability of A.L.L. has gone from a rarity to an almost certainty with modern treatments over just the past few decades, and our focus is on supporting and ensuring his best chances.