Becoming a Parent of a Child with Leukemia | Vol. 3 | Early Treatment
Hello! I'm Yuna Shirakura.
It has been quite a while since my last article.
My second child was born in February, and I have been busy with newborn care, but I will slowly continue writing this.
My eldest son was diagnosed with pediatric leukemia in December 2022. He was 2 years and 2 months old at the time.
You can find the previous article here.
The symptoms of the illness appeared in November 2022, and he was able to be discharged in August 2023.
I will write about what happened to us during that time, divided into the following six parts:
Onset to Diagnosis
Early Treatment
Parental Emotions
Parental Response and Visitation Schedule
Temporary Discharge Period
Late Treatment
(The number of items has increased since the beginning).
This time, I will cover part 2.
A Digression on the Diagnosis
Before getting into the main topic, I wrote about the process leading up to my son's leukemia diagnosis in the previous article, but here are two digressions I couldn't fit in.
Couldn't you have noticed the leukemia sooner?
I asked myself this several times after the diagnosis.
The reason is that right after the onset, my husband and I suspected a surgical condition and kept contacting orthopedic clinics and the like.I did have the thought that if we had reached the leukemia diagnosis more directly, we might have been able to reduce our son's suffering. However, at the time of the diagnosis, the attending physician emphasized, "
It took just over three weeks from the onset to the diagnosis. That is by no means late, so please do not blame yourselves."
I heard later that my son's subtle initial findings are difficult for general pediatricians or doctors specializing in adult orthopedics to detect.
Only a few pediatric leukemia specialists in Japan, starting with the National Center for Child Health and Development where we were treated, could have suspected leukemia from this MRI result.
Thinking about that, I was able to honestly accept that we visited every hospital we could think of as laypeople, persisted even when told there was nothing wrong, and it took three weeks to get a diagnosis; perhaps it wasn't that bad after all.
Thanks to the attending physician's careful explanation, we did not blame ourselves too much or hold any strange grudges against the hospitals we had visited until then. Since they emphasized it so much, I imagine there must be many parents who blame themselves. It's sad.
Is leukemia that starts with leg pain common?
I also asked the attending physician, "Is it common for leukemia to start with symptoms like leg pain or being unable to walk?" and was told, "It is not rare for leukemia to be discovered in this way."
Indeed, now that I search online, "leukemia leg pain" and similar terms appear at the top, so perhaps if I had been able to look at information more neutrally, I might have noticed.
The following are related articles. They are about other patients, not my son.
However, at the time, we were thinking "There is no way my child has leukemia," so even though they appeared in search results, we unconsciously tried not to look at them.
I realized later that I, too, was subject to confirmation bias, where I unconsciously skipped over information that was inconvenient for me.
Start of Treatment
He was diagnosed with leukemia on December 22, 2022, and treatment began immediately the following day, the 23rd.
12/23: Catheter insertion surgery
Same day onwards: Pre-treatment (steroid administration) begins
12/31 onwards: Chemotherapy begins
It looks simple when written in bullet points. In reality, all sorts of things happened that couldn't be written in just three lines.
At the time of diagnosis, we were told, "Once the steroid administration begins, the pain should ease, and he might be able to walk by next week."
Although the treatment itself was frightening, I held onto hope that since he was finally diagnosed and treatment had started, he would at least begin to recover.
But reality is not that simple.
Catheter Surgery
First, he had surgery the morning after the diagnosis.
That said, it wasn't for any actual treatment, but rather surgery to implant a catheter in his chest for administering chemotherapy and other drugs. Since he would need daily infusions, it would be difficult for a small child to have needles inserted every time or to have a needle left in his arm. So, they inserted a tube from his chest to deliver medication directly into his blood vessels.
Just imagining a tube constantly inserted into my son's chest was painful. The surgery was performed under general anesthesia and took about two hours.
Immediately after the surgery, he was still able to talk and eat, and he seemed fine. The real, grueling treatment started after this.
Pre-treatment
Along with the catheter insertion, steroid administration continued for one week as a pre-treatment for the chemotherapy that would follow.
This steroid is effective in destroying tumor cells, and for some people, it seems to alleviate pain as the doctor explained.
However, my son seemed to be in a lot of pain from this treatment and kept crying the whole time.
According to his attending physician, my son's bones are packed full of leukemia cells, so they are starting to collapse, which is likely causing the pain, they said. It is horrifying just to hear.
I will write about this in more detail in a later post, but visiting hours are only from 11:00 to 20:00.
Outside of those hours, although nurses or childcare workers occasionally come by, he basically has to spend the time alone.
Having just turned two, and never having slept away from his parents before, it seemed incredibly difficult for my son.
At the beginning of his hospitalization, he seemed to cry all night from pain and loneliness, and when I entered his room at 11:00 in the morning, I found my son with a face swollen from crying.
In parallel, he also developed a high fever of over 39 degrees Celsius and was delirious the whole time.
Perhaps his consciousness was hazy, because even when I arrived for my visit, although his eyes were open, he couldn't recognize me and kept deliriously saying, 'Mommy isn't here...'.
Even when I was there with him, I could only soothe my son as he cried, felt pain, and thrashed about. My own helplessness really wore down my mental state.
Seeing my son like I had never seen him before, my honest feeling was, 'This is too chaotic. What is this?.'
I couldn't bear it alone, so I remember texting my husband constantly even during visits.
Morphine administration
Because he was in so much pain, I frequently used the nurse call button to consult with them, and as a result, the attending physician suggested, 'How about administering morphine?.'
'Morphine...? When you say morphine, you mean that morphine they give to terminal cancer patients to make them a little more comfortable, right?' was my reaction.
I apologize for speaking based on an image. At the time, I had no knowledge and that was the extent of my understanding.
'Are you going to administer such an intense drug to my two-year-old child? Is my child that sick?' I thought, while on the other hand, I was faced with my son crying in pain, and wondering if I had any choice but to have it administered if there was no other way. I was at a loss.
After receiving an explanation from the doctor that its safety had been confirmed, we eventually had it administered.
Later, when my mother-in-law asked, 'Is it okay to give him something like morphine?!' (she meant no malice; it was a question born of concern), we could only reply, 'I think so. Because he's in agonizing pain. The doctor said it was okay, too...'
Unable to keep up with the things happening one after another
What was so difficult was that even when asked to make a decision, I had no medical knowledge and no time to research. Even so, the task of making decisions on the spot and signing consent forms continued.
Is it okay to use general anesthesia?
Is it okay to perform a blood transfusion?
Is it okay to use physical restraints?
Is it okay to administer morphine? etc.
The attending physician carefully explains what they will do, why they will do it, and what effects it will have.
I understand that each thing is important and necessary for my son's treatment.
However, medical procedures always carry risks, and the explanation, 'There is a one in XX chance that these aftereffects will remain,' is always included as a set.
During pregnancy and childbirth, you receive similar explanations, such as when being administered labor-inducing drugs.
However, in most cases, you have about a month of lead time before your next checkup, so you can research it yourself, understand the risks, and, as a couple, feel convinced and sign the consent form.
And in most cases, nothing happens and it ends there.
This time, unexpected symptoms were occurring one after another, and we had no choice but to respond quickly each time.
The doctors and nurses were excellent, and things were moving at a speed we couldn't keep up with.
Even though it was happening to our precious son,we had no choice but to go with the flow without really knowing if we understood or were convinced.
Side effects only occur with a probability of one in several thousand, and basically, they don't happen.
Even knowing that,we are the ones who passed through the first gate of getting childhood leukemia, which only happens to one in tens of thousands of people in the first place,and are here now.
I felt like any low-probability aftereffect or side effect was likely to happen.My senses were numb.
It felt like that; even though it had only been a few days since the diagnosis, we had tumbled into an incredibly difficult life of fighting the illness before we knew it.
On the calendar, it was just Christmas.
We had come a long way from the normal Christmas I had imagined a little while ago, where we would eat cake as a family and open presents.
The difficult period will continue until about the next article.
From the one after that, the story will become a bit brighter.
That's all for now.
The top image shows my son, who no longer has the energy to feel pain, with a faint reaction and an expressionless face.