Days since Charlie’s diagnosis: 14
It has been exactly two weeks since Charlie was diagnosed with leukemia. For most of that time Charlie was stuck in a hospital bed, while various nurses and doctors administered chemotherapy, steroids, blood transfusions, and other treatments in an attempt to put the leukemia into immediate remission. It seems that those treatments have been going well because we have learned that there is no more leukemia visible in his blood (when viewed under a microscope). For this reason (and due to the fact that Charlie is starting to get some of his energy back), the doctors informed us two days ago that we are clear to bring Charlie home and continue treatment there. So that’s what we did.
Charlie is not yet cured; he still has two years or more of treatment ahead of him. But he’s no longer in critical danger or in need of constant transfusions just to stay alive. So now he can be back in his home, where things are familiar, and continue treatment from there (and at the out-patient clinic). Apparently just one week of chemo is enough to put the leukemia into remission, but it will take two additional years to ensure it is completely killed off (so it doesn’t ever return). Charlie will return to the hospital at least twice a week for chemo treatments, spinal taps, and other procedures, but (assuming he stays healthy) he will always be able to return home each night.
The biggest risk to Charlie’s health right now is no longer the leukemia, but instead infection. Though the leukemia is largely gone, the continued chemo treatments will demolish his immune system, especially for this first six weeks home when the chemo treatments are most intense. Charlie is entering the winter with a severely weakened ability to fight against viruses and bacteria, so we have to be ever vigilant for signs of fever or infection of any kind. Unfortunately the biggest infection risk comes from the bacteria within his own body (which we can do nothing to prevent), not from outside sources (which we can attempt to protect him from). The “friendly” bacteria that lives in our gut and helps us digest is usually kept in check by our healthy immune systems. But for Charlie this bacteria might decide to try a jailbreak while the guards are asleep, and start attacking other parts of his body. What is frustrating about this is that we have no control or ability to mitigate this risk. It’ll just be a matter of luck. So Charlie’s winter goal is to survive long enough for his immune system to grow back.
Another challenge for the poor little nugget is that he has to take a pretty massive assortment of medicines multiple times a day. He’s got steroids which make the chemo more effective, antibiotics to fight infection, drugs to help his low blood count, anti-nausea meds, anti-fungal meds, and other things too. They don’t seem to taste so good, and it’s clearly giving him anxiety that there’s so many yucky meds that we keep putting in front of him throughout the day. We haven’t yet figured out a way to deliver these smoothly. In fact I’d say that getting him to take his meds (without causing him to gag due to the quantity/taste) is the primary challenge of this week. If we can engineer a solution to this one, his life will be much more pleasant. The constant meds are his biggest source of suffering right now. And on days when he has a spinal tap (and therefore anesthesia), he’s not allowed to eat or drink anything in the hours leading up to the procedure, but we are still expected to give him meds (some of which are supposed to be taken with food to prevent nausea). This is a real puzzle. Trying to give a ton of meds to a three year old with an empty tummy just seems cruel… but we all soldier on.
In conclusion, the highlights are Charlie is home! He can go on walks and take baths and sleep in his bed and hang with his brother and play with all his toys and cuddle on the couch. That alone is worth a million bucks. The lowlights are he has to take tons of horrible medicine, abstain from food/water every few days, and somehow hide from invisible harmful bacteria that already lives inside his body.
This is going to be quite a journey for the little guy.