Category: Leukemia Journal

Today we are home. Yesterday was Christmas, and we were finally all together at home again, the four of us, after nine long days apart. Charlie just got home from a lengthy hospital stay, just in time for Christmas (it was really coming down to the wire). The children could wake up Christmas morning in their own beds, and race to the living room to find that Santa had come. We could all open our presents and cook brunch and watch Christmas movies and listen to the rain falling outside, cozy at home and very much together. In so many ways we are very very lucky.

Today Charlie looks today like a happy, healthy little boy. As I mentioned in previous posts, the doctors were able to put his Leukemia completely into remission within a couple weeks of treatment. All the subsequent treatments (over the course of the next two years or so) are meant to hunt down and eradicate the teeny tiny remnants of Leukemia hiding here and there in his body, in order to permanently prevent relapse down the road. So for the past month Charlie has been essentially cancer-free, which means he no longer has to deal with the bone pain, extreme fatigue, and the generally yucky feeling that comes with having Leukemia. Now that he isn’t in pain any more, his personality has come roaring back. He is goofy and quirky and hilarious most of the time, a ray of sunshine and joy who lifts the spirits of all who come into contact with him. He’s also been gaining strength, and making real progress on his mission to walk again. He’s plump and rosy-cheeked and precocious. These days he really resembles a happy little puppy, crawling and wiggling around the house, hopping up on my lap for a belly rub, happy to be alive.

We have officially entered the second phase of treatment, called Consolidation. I’m not sure what exactly is being consolidated, but I do know that this phase is supposed to be an intense one. It lasts for eight weeks or so, and during that time Charlie will have to endure multiple sessions of chemotherapy (the medicine kind, not the radiation kind), and stay at the hospital for at least four different stretches so the doctors can monitor him while the chemo works its way out of his system. 

On Dec. 13 we entered the hospital for the first of these four stays. Each time we go in for a session like this, it’s always a bit of a bummer because we know that the chemo is going to knock Charlie down a bit, and erase some of the progress he’s made. The drugs make him feel pretty bad, sapping his energy for a while and bringing on waves of nausea. It’s only temporary until the medicine is out of his system, but it still isn’t easy to watch him suffer. Personally, there’s a part of me that feels like it’s wrong to give my child medicine that makes him feel sick (it’s not the cancer making him sick right now, it’s the treatment), almost as if I am choosing to bring on his suffering. However I also understand that we have to proceed with this course of treatment in order to actually cure the cancer. If we stopped treatment early, in order to spare him this discomfort and expedite his return to normal kid-life, the cancer would definitely return in short order. To make it worse, if we leave the cancer cells alone and allow them to rebuild their population, they will adapt and become resistant to treatment, since only the strongest and most wily of the cancer cells have survived these first rounds of chemo. If those survivors are allowed to reproduce and spread, they’ll create a new generation of super-cancer that would be impervious to the chemo. So we have to see this through, even it makes Charlie sick.

This most recent stay was a long one, nine days. It was supposed to be four days, but the chemo just wasn’t leaving Charlie’s system quickly enough, so we had to wait and wait. Predictably, the chemo made Charlie feel gross for a few days. Since the oncology unit practices very strict anti-germ protocols, Charlie isn’t allowed to leave the 5th floor of the hospital during his stays, so we can’t go outside for a walk or explore the hospital or take him to the cafe. Unfortunately Charlie’s life becomes a bit one dimensional when he’s admitted for long stretches. But we try to mix it up however we can. As Charlie slowly got his strength back and started to feel better again, as the chemo left his system, we set up a play mat on the floor of the hospital room and played with cars and puzzles. We watched the Cars movie a hundred times, and watched the hospital helicopter take off and land outside our window. We took a stroller walk around the 5th floor and tried to find all the Christmas trees (we found two).

During that time, as we creeped closer and closer to Christmas, we started to get nervous that we would need to spend Christmas apart. During the hospital stays, Erica and I alternate who stays at the hospital and who stays home with Jack (he isn’t allowed to visit Charlie due to Covid protocols). We really wanted the Christmas magic to be there for the boys this year, we really wanted them to be together. As the big day approached, and the doctors still told us we’d be there “a few more days”, we were working out the logistics of who would stay home Christmas Eve to wrap all the presents and make sure Santa came.

Then, the day before Christmas Eve, they told us we can go home. It was such a narrow window of home time – we return for the next chemo session tomorrow, on the Dec. 27th – but it just so happened that we got to be home right on Christmas. It timed out perfectly, four days at home that landed perfectly at Christmas. We are so grateful for that time at home with these boys. And to top it all off, Charlie looks better than ever, a happy healthy little puppy. After just a day at home, he had bounced right back strength-wise. We know that the next chemo session might last another nine days, and that it will likely make him sick for a little while. But now we also know that he bounces back, that he’s resilient. We used to struggle with administering his daily medicines; now that’s just part of his routine. He used to struggle to sit up on his own; now (after much practice) he can pretty much stand up on his own again. Charlie has demonstrated that he can do hard things, that he can get through the unpleasant parts, which is a skill that will transcend this stage in his life and allow him to survive (and hopefully even thrive) through all the difficult phases that come throughout a long life. 

At least for this moment, the day after Christmas, Charlie isn’t dealing with anything particularly difficult. Today there’s no pain or yucky feeling or chemo. Today he’s surrounded by Christmas presents and people who love him. His only job today is to crawl and wiggle around the house, to play and laugh and eat, to live a care-free lifestyle, the way a three year old should. We’ll go back to the hospital tomorrow, but today is all about fun. Every life is full of these oscillations, where one day is fun and another is hard. We all have to learn that when it’s time to work we must work, and when it’s time to play we must stop working and go play. It will never be all fun all the time, but if we are resilient and clever, hopefully it won’t always be work either. I wouldn’t expect a three year old to understand this lesson, but Charlie has miraculously already learned it. His joy for life is contagious, even when he has to do hard things. I can’t think of an individual better suited to deal with the difficult road ahead than Charlie.  

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.

Days since Charlie’s diagnosis: 6

Charlie takes a lot of strange medicines.

First and foremost are the highly toxic chemotherapy drugs that target and destroy cells that reproduce quickly. Since Leukemia cells are very rapid dividers, these chemo drugs are very effective at making Leukemia cells explode all over the body. When these Leukemia cells explode they release their contents into the bloodstream, which can wreak havoc on the liver and kidneys, so Charlie has to take medicine to flush all this stuff out of his body quickly. Blowing up all the naughty cancer cells and flushing them out is the primary way the doctors plan to put Charlie into remission. Of course it is a bit strange to see my toddler taking cocktails of medicine that is so toxic the nurses wear full body protective clothing any time they handle the stuff. But really what choice do we have?

Charlie also has to receive a lot of fresh blood and platelets just to stay alive. This is because Leukemia cells crowd out the hemoglobin (and other helpful things) in the blood, which essentially renders one’s blood unable to process oxygen or fight against bacteria. When we brought Charlie into the Emergency Room last week, he was in the process of dying from this. The constant infusions do not fight the underlying problem (too many Leukemia cells), but instead they stabilize Charlie so he can stay alive long enough to receive the chemo (which does fight the underlying problem). At first all this blood was more liquid than Charlie’s little body was used to (his heart had grown accustomed to working with scarce resources), so some of the liquid backed up into his lungs and gave him a wet cough that kept him up all night. But more recently the blood has clearly recharged Char and brought back a lot of his former strength. He’s been joking and acting silly these past couple days, wiggling around the bed and getting up to come sit by the window. Seeing the smiles, watching his personality bloom again, seeing him have the energy to eat and chat and laugh… it’s been so very precious. Gotta live in the moment these days.

And then there’s the steroids. Steroids are a big part of the treatment because they help the chemo more effectively destroy leukemia cells, and they reduce the allergic reaction the body has to toxic chemotherapy drugs. Char is getting roided up, so of course he periodically experiences roid rage (roid rage + moody toddler = ridiculous behavior). Even without the steroids, who wouldn’t be mad at being trapped in a hospital bed for days, feeling depleted and yucky and weak, pumped full of strange meds that make you feel weird, poked and prodded by strangers all day and night? From my perspective, it’s very tough to see my little baby suffering with these weighty problems. He’s being given a course in resilience right now, but he’s still so little that I’m not sure he’s ready for such a lesson. But ready or not, here it is.

Tomorrow Charlie will get his second of many spinal taps, where the doctors will check his spinal fluid for Leukemia and inject chemo into his spine. When I type it out it all sounds so wrong, so cruel, so backward. But if we don’t do this thing, the leukemia cells will continue to overwhelm his body (no matter how much fresh blood he gets), and he will die from it. So he’ll take all the chemo drugs, and fluid flushing drugs, and anti-nausea meds, and steroids, and spinal taps, and fresh blood, and other things too, because that seems to be the only road to a cure. The American Cancer Society says that with the new drugs and treatments available today, “the 5-year survival rate for children with [Charlie’s sub-type of leukemia] has greatly increased over time and is now about 90% overall.” In a strange way, that makes Charlie lucky to have gotten this cancer instead of another one, because the doctors at Stanford know how to kill this disease. It can be done by giving my baby a whole big bunch of poison for a long long while. So that’s what we will do.

Side note: Erica and I have been rotating in and out of the hospital each day, so that one person stays with Char at Stanford and the other person stays home with Jack (who is not allowed at the hospital due to Covid). A massive rain storm pummeled the whole Bay Area all day, knocking out the power in our home from 7am all the way until 8pm or so. It’s my night at home, so Jack and I sat there this afternoon watching our house grow colder and darker as the hours passed, sat there in the gloomy and quiet house, listening to the violent storm, thinking about Char and the strange, eerie quiet, and how not too long ago it was summer and we were all out on the open road camping and exploring and being noisy and living life. I know that summer will return again in the future, and that Charlie may in fact heal and go on to live a long and happy life, that there are real reasons for hope, and that we are so blessed in so many ways…. but tonight, when the rain is pounding and the house is so cold and Charlie is so far away, and I know that tomorrow Char won’t be able to eat all day because of his procedure, and that he’s going to be so miserable and confused, and that he will face so many hard days coming up… when I think about that stuff, well, I just get pissed off.

Days since Charlie’s diagnosis: 3

My son Charlie (age 3) has leukemia. We found out three days ago. He was lying in his bed all day long, not wanting to move, not eating, just looking weak and miserable. We video conferenced the doctor, and she said go to the ER. We got to skip the waiting room and go straight to a doctor, as if every medical professional that set eyes on him could tell something was seriously wrong. They drew blood and came to tell us, with absolute certainty, after one look at his blood, that he for sure 100% had leukemia. They could see the leukemia cells right there in the microscope.

Charlie has been exceptionally brave and stoic throughout this ordeal. He’s already been poked and prodded and examined and checked at all hours of the night, tied to tubes and wires, stuck in a bed in a strange place far from home, surrounded by strangers, feeling sick and exhausted and confused. Yet he’s still his goofy self, especially as the treatment starts to give him some energy back.

The first step was to stabilize him by giving him multiple blood transfusions. Those aggressive leukemia cells have been crowding out the other cells in this body – like the ones that carry oxygen to the brain or fight against bacteria – leaving him weak and sick. So the doctors started by giving him blood and platelets to bring him back up to baseline so that he would be well enough to begin chemotherapy. And it really did work; he really did have his energy back today! He was cracking jokes and making silly faces and pretending to be a doctor. Watching him play and be silly reminded me that he has been pretty lethargic for the last month. Now it makes sense why our energetic boy was suddenly so tired and fragile all the time, why he had stopped running or riding his bike, why he just wanted to be held all day.

Today he also took his first dose of chemo. If I am not mistaken, he will now continue to take chemotherapy medication for the next three years. The doctors (here at Stanford) seem to be preeminent experts in treating this very illness, so it appears we are in the best possible hands. They are kind and confident and experienced. I am attempting to find hope in their confidence.

When Charlie is frustrated or confused or in pain, I find it very challenging to stay strong. When I have to wake him up at 4am so a nurse can poke him with a needle, or when he can’t leave the bed for days on end, can’t cuddle the same way or see his brother, when his confusion and pain turns into rage…. that’s when I feel my facade slipping. Charlie needs us to be strong and confident like the doctors are, but sometimes the fear is overwhelming. Fear that we will lose him. Fear that the way of life that we loved so much (before he got sick) is gone forever. Fear that he will be in pain every day for a long long while. Fear that he will never get to live a life, that it will be taken from him, that he won’t understand why, that he will suffer for a time and then be gone forever.

But dwelling on this fear does not seem to carry any benefit. Yes I need to plan for these contingencies, but already I can sense that the fear and sadness are not beneficial emotions, as natural as they might be, They do not clarify my thoughts, nor do they help me navigate difficult moments better. I do not necessarily believe that suppressing the fear and sadness is beneficial (and I am not a trained therapist); I am only observing that I do not find those emotions particularly helpful while I’m down here in the trenches. If they could be gotten rid of, this process might be much more manageable. Charlie is clearly feeling a lot of fear, and wouldn’t it be nice if I was confident like those doctors, so that I could absorb his fear and help him feel secure and supported. Is this possible, is this wise? I don’t know, everything is still so new. It has not yet sunk in that this is our new life, our permanent life. Once that sinks in, once Charlie survives this first month, this first year, maybe the fear will go away on its own.

We can do hard things.