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.