Month: November 2021

It’s been almost a month since Charlie was diagnosed with Leukemia. 

The first two weeks after the diagnosis were spent at Stanford Hospital, where the oncology team used a combination of chemotherapy and steroids to put the Leukemia into remission. The chemo destroys cells that rapidly reproduce, and nothing reproduces faster than Leukemia cells. This is why the chemo works so effectively against this type of cancer, and why Charlie was essentially Leukemia-free at the end of this first two weeks. We’ve heard that in the old days, once the Leukemia went into immediate remission the children would be taken off chemo and sent on their way. But inevitably within a certain span of time the Leukemia would come back again at full strength (apparently microscopic amounts of Leukemia can hide out inside nerves or some other secret place within the body), so now the oncology team’s protocol is to continue treatment for years in an attempt to hunt down and kill every last Leukemia cell in Charlie’s body. This is how they intend to cure him for good.

So after two weeks they sent us home with a bunch of meds and a schedule of recurring hospital visits. Twice weekly Charlie would return to the hospital to get chemo (and undergo other treatments), but after each one he would return home so he could sleep in his own bed, see his brother, and get back to his comfort zone. Unfortunately just four days after being released, Charlie had to be readmitted to Stanford so the doctors could treat some of the unfortunate side effects of the chemotherapy. We spent three more nights at the hospital, at which point the doctors felt that he was ready to re-return home.

We have now been home a full week since that second release from the hospital, and Charlie is showing real progress. On the medical side, the doctors are all quite excited by Charlie’s test results, which seem to indicate that the treatments are working. At home, we have watched Charlie gain more strength day by day. He generally wakes up in the six o’clock hour and asks if he can eat spaghetti (the steroids give him intense hunger and occasional roid rage), then after his morning pasta he usually wants to watch a movie, work on puzzles, maybe take a stroller walk or go with me to get coffee, and usually by 9am he’s ready for second breakfast. His strong appetite is a great sign, since it means he isn’t nauseous from the chemo, and it’s giving him lots of good calories. The doctors told us they never want to see a cancer patient losing weight, but Charlie is doing the exact opposite; his double chin is becoming more pronounced by the day! His hair has also started falling out, and when you combine that with his pasta gut he kind of resembles a very cute 50 year old man. The point is Charlie is showing multiple signs of progress. 

Charlie’s next big challenge will be regaining the strength to walk. One side effect of Leukemia is bone pain, and we suspect that in the weeks leading up to Charlie’s diagnosis he was feeling a lot of pain in his legs. Now that the Leukemia is out of his body, the bone pain has likely gone away, but the memory remains. Pair that with the long hospital stay where he was confined to a bed, and the general weakness that Charlie feels from the chemo treatments… and pretty much all Charlie wants to do is sit in a comfy chair all day. So he’s got some physical therapy appointments coming up to try and bring him out of his comfort zone a bit and build those legs back up. Now that I’ve seen how strong and brave and resilient Charlie is, I don’t see that walking goal as something overly daunting. At first the large number of medicines Charlie had to take each day seemed very daunting, but over time we were all able to work out better systems, and Charlie got used to taking lots of meds. I’m not saying that the meds are a fun part of his day, only that he gets it done, and it is no longer daunting. I’m pretty confident that, so long as Charlie keeps recovering as he has been, he will approach the physical training the same way he’s approached everything else about this process: he’ll work at it and get the job done. 

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.