Becoming a Parent of a Child with Leukemia | Vol. 4 | Parental Emotions
Hello! I'm Yuna Shirakura.
My eldest son was diagnosed with pediatric leukemia in December 2022. He was 2 years and 2 months old.
Click here for the previous article.
The symptoms 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
Latter Half of Treatment
This time, I will cover part 3.
While the previous articles were written chronologically based on facts regarding the symptoms and treatment, this article will touch a bit more on the emotional side.
Due to its nature, there will be a lot of negative descriptions.
I think the stories will become a bit more positive from the next article onwards.
Nursery School
When will the day come when he can go to nursery school again?
As I wrote in the article before last, he stopped being able to attend nursery school about a week after the symptoms appeared. He couldn't walk anymore, so that was to be expected.
After he couldn't go to nursery school and we spent 10 days just going around to hospitals, nursery school felt like a very distant existence.
Perhaps because of that state of mind, when I happened to see a line of nursery school children while going around to hospitals,
"I wonder when my son will be able to return to nursery school like this and play with everyone. I wonder if such a day will really come."
Tears came to my eyes naturally.
Usually, I'm the creepy person who smiles and watches lines of nursery school children thinking, 'How cute,' but I evolved into a dangerous person who starts crying.
Nursery School Withdrawal
A little while later, on the second business day after receiving the leukemia diagnosis.
When I told the municipal office that he would be hospitalized for a while and couldn't go to nursery school, I was told to submit a withdrawal notice within this month.
At that point, it was 12/26.
Within this month means there are only 2 business days left.
"Wait, in just two days, my son will no longer be a child at that nursery school?"
I remember not being able to process my feelings.
He had been attending that nursery school since he was five months old, for a year and a half. It was a natural part of his life.
He had friends he got along with and teachers he loved.
It wasn't just for my son; if we as parents had any concerns about his health or development, we could consult them about anything. They were truly a presence that watched over my son's growth alongside us.
Hearing about his day at nursery school from the teachers was the highlight of my day after work.
Of course, I understood that the municipal office's intention was to be considerate, saying, "It's tough to pay tuition when he won't be able to attend from next month on."
Even so, I couldn't help but think, "He suddenly couldn't attend due to illness, so couldn't there be some kind of relief measure?"
However, with the ongoing issue of children on waiting lists, I reconsidered, thinking, "there might be someone who needs my son's spot," and submitted the withdrawal notice.
This point—if diagnosed with an illness and hospitalized long-term, you must withdraw immediately—was one of the things I found myself questioning throughout this illness: "Can't something be done about this?"
It was already a shock to be diagnosed with an illness, but to add insult to injury, I had to complete the withdrawal paperwork within a few days.
Moreover, in the municipality where I live, you can only process it on paper, so you have to go to the municipal office. You can do it by mail, but in our case, since the situation arose at the end of the month, it wouldn't have arrived in time, so I had to go in person.
It was emotionally draining, and I remember feeling frustrated because I wanted to devote as much time and energy as possible to visiting him.
Even if withdrawal was inevitable since he couldn't actually attend, I think it would have been different if there had been at least a simplification of the procedures or an extension of the period.
Since it happened at the end of the year for us, it might have just been a coincidence, but this is a point I want to think about to see if anything can be done for children who get sick in the future and their parents.
Tears again at a LINE message from a mom friend
There was also a LINE group for the moms in his nursery school class, so I thought it would be strange to just disappear without saying anything, and I told them we were withdrawing.
Everyone sent warm messages like, "He will definitely get better," "We'll be waiting for you," and I burst into tears again on the Odakyu Line on my way home from visiting him.
I seem to be crying everywhere.
I decided that if I see someone crying on the train from now on, I will try to be kind, assuming they have their own circumstances.
The usual intersection
After he was hospitalized, on my way home from visiting him, I would pass the intersection where I always used to walk with my son on the way home from nursery school.
The usual intersection. The same 6:15 PM as always.
All around me were parents and children who looked like they were having conversations like, "Did you have fun at nursery school today?" or "Let's go home quickly," just like my son and I used to.
But my son is not by my side.
Whether I like it or not, I realize that my daily life has been lost and that the life I once knew has become something far away.
Gastroenteritis Infection
Well, with all that going on, the first week of hospitalization was quite tough.
What really finished us off was the whole family catching gastroenteritis.
My Son's Gastroenteritis Infection
If you have children, you might remember, but wasn't gastroenteritis spreading like crazy at the end of 2022?
The hospital was no exception, and shortly after we were admitted, a major outbreak of gastroenteritis hit the ward.
My son inevitably caught it too. He was moved from the shared room into isolation.
Since this was happening in parallel with the initial steroid treatment I wrote about in the previous article, my son was visibly weakening from the pain of the treatment's side effects, plus vomiting, fever, and diarrhea.
Parental Gastroenteritis Infection
Next, my husband caught gastroenteritis.
He went to visit every day and handled things like changing our son's diapers, so it was unavoidable.
Since it was still a time when COVID was prevalent, if you had vomiting or a fever, you were prohibited from visiting.
Following my husband's infection, not only was he banned from visiting, but as a cohabiting family member, I was also prohibited from visiting.
As I mentioned in the previous article, my son would cry all night and couldn't sleep without us there.
He was in the middle of a difficult treatment to begin with, and I just wanted to be by his side.
When I finally went to visit after a few days, he was sleeping with a tear-stained face, clutching his tablet. It seemed like videos were his only comfort. It was heartbreaking.
I was being extremely careful, thinking that if I caught it too, I wouldn't be able to see him again.
Even so, just three days after I was allowed to visit again, I caught it myself.
It's incredibly difficult to keep from catching it when your child has gastroenteritis, isn't it?
Being mentally on the verge of collapse, dealing with vomiting, diarrhea, and fever was really tough. It's always much worse when an adult catches it, isn't it?
The Search Demon Returns
While I was bedridden with gastroenteritis and unable to visit, I became a 'search demon' once again.
I was mainly looking up things like 'leukemia child mortality rate', 'pediatric leukemia death' and so on.
Of course, if you search with keywords like that, only sad articles come up.
However, I couldn't overcome the anxiety of 'what if my son disappears from our lives', and I couldn't stop myself.
My mind reflexively tries to protect me from the time my son is gone by thinking things like, "Well, my husband and I lived happily together before our son was born, didn't we?" but about two seconds later, another part of me immediately denies it, saying, "No, no, that's impossible. Think of how happy I was when my son was born. There's no way I could ever go back to a life without my son."
Another thing I was thinking about around that time was, "I didn't have the readiness or the qualifications to be a parent".
To be a parent means that there is a one in tens of thousands chance that your child will get sick, and you might even lose them. Shouldn't I have become a parent only after being prepared for such risks?
I had carelessly become a parent with nothing more than the thought, "Kids are so cute! It looks tough, but I want to try raising one!" I felt that my past self was incredibly shallow.
This is also an extreme argument, isn't it?
If you could only become a parent after considering every single one-in-a-million possibility, no one would ever want to be a parent.
Even as I write this, I think that the point is that I couldn't accept the reality that "there is no way my son could have leukemia".
Not talking, not laughing, not playing
In the end, visits were prohibited for about a week, and when I finally saw my son again, he had lost even more weight and his vitality was gone.
His once chubby tummy and bottom had lost their fat, and his skin was loose.
He had lost weight, and his diaper size had gone from L to M.
It was difficult to put pants-style diapers on my bedridden son, so we went back to the tape-style ones we used before he could roll over.
Seeing him like that, I wondered, "Will my son really ever be healthy again?"
For the two years since my son was born, every bit of his growth had been a joy for us.
The day he first laughed.
The day he first played with a toy.
The day he first spoke.
The day he first walked.
I was also happy to see his diaper size go up, as it made me feel his growth.
However, just 10 days after being diagnosed with the illness, he stopped laughing, stopped talking, and let alone playing, he couldn't even lift his body, and just lay limply in bed.
I felt as if the growth my son had built up until now had come crashing down with a loud noise.
I think this was the time I was most escaping from reality, thinking, "Is this reality? Am I having some kind of bad dream?".
Well, we as a couple have been completely exhausted and beaten down by the illness so far, but we cannot stay like this.
From the next article, I will write about the steps we started to take.