In April, we have 3 Tuesdays in a row where we focus on registering kindergarteners for the upcoming school year. This past Tuesday, I was in the process with a child and reached the category, “Health Information”. We need to know if the child has any allergies, takes any medication during the day that our nurse might have to administer, etc. I reached the question, “Does the child have any established medical conditions?” The mother’s eyes teared and her face flushed, and she was obviously agitated by the question. Her answer: “He was just diagnosed yesterday with brain cancer.”
The air went out of me, but I kept it together. Me: “Did the doctor identify the cancer?” Her: “Medulloblastoma. He said that it’s a fast-growing and aggressive brain tumor in his cerebellum.”
We finished the registration for school starting in the 3rd week of August. I researched the tumor and, according to the statistics, the child has a 75 to 80 chance of survival. Will he make it here in August, or did I register a child with a death sentence? It’s really bothering me, and I’ve been thinking about it off and on ever since. Never had an experience like this before.
In my experience the family needs a good rapport with the school, school nurse(if there is one) and coordinate with the child’s healthcare needs.
I spent more time with the nurse than I did in a classroom some periods of my schooling. My teachers always seemed to be helpful. Had a few duds, but mostly they tried to make me safe and worked with me with my school work or what I missed in class.
That’s a good question. Fortunately, we have 3 1/2 months before school starts, so everything will be in place in terms of treatment and medication. Our school nurse will know what medications have to be prescribed (if any) here at school and when to administer them. We’ll know his treatment dates so we’ll know when he will be absent. Fortunately, it’s kindergarten, so we don’t have to worry about heavy duty academic makeup work or IAR testing.
I’m glad you’re on top of things. I was thinking of things like, “Should the child not be outside during recess?” I have no idea if that’s a concern, but the nurse, working with the child’s medical team, can advise.
I’m having a hard time reconciling “fast-growing and aggressive brain tumor” with “75 to 80 percent chance of survival”, but I hope things go well for the child and he gets to have a normal life. Sounds like you handled the interview well, Jasmine, and that you and the school will be handling things well going forward.
Thank you! I’ll be honest, I was totally blindsided when I heard that. I think she made the right decision in registering her child, though. She has to move forward believing her child is going to recover and come to school.
Possibly the latter is ‘with rapidly applied and aggressive treatment.’ Which is presumably what the child will get.
Agreeing. And while nobody wants to hear a chance of survival less than 99% ideally even with some more nines following a decimal point, 70% to 80% is considerably better than even odds.
I’m glad the school will work with the family on this; and that it reads that they’ll do so willingly, not just in grudging compliance with law.
It’s important for the child to be able to have normal childhood experiences while undergoing cancer treatment. I’m sure he’s been waiting to go to “big kid’s school” for ages. Even if the cancer ends up winning in the end, school is the opportunity to forget for a bit what’s happening to him. And 75-80% chance of survival is pretty good. Back when I was a kid, even something like leukemia was almost always fatal. Now it’s usually curable.
You have my sympathy. I cannot imagine how I’d handle a situation like that.
Moving on, I think one issue that should be addressed with the school nurse or some other medical professional is what the likely effects of the child’s treatment will be and how the teacher should plan on handling them. If, for example, the child is going to lose their hair should it be explained to the other children in the class what’s happening? How will the teachers handle it if the other children ask why this particular child is often absent? Or how will they handle it if there is teasing?
I just googled it. What I found is that the 5 year survival rate is 72% and that with proper early treatment, long term survival is possible. Treatment consists of surgery, radiation and chemo.
It is a chance for the school/ school district to shine. Keeping the child “involved” by preparing and sending stuff to the parents to bring to the hospital. By letting the child’s class know about the child, they could write cards, etc. etc.
If all move ahead positively, it won’t be such a massive shock when this child enters the classroom weeks or months late.
On that note, and because I was really curious to know, I stopped in the hallway the head of our LBS1 services and asked about the child and what it is we do in cases like this. It turns out that we fill out special paperwork allowing us to provide off site services. So, for example, if the child is too weak or sick from chemo or simply not strong enough to travel, we will provide services where the child is located until the child is able to attend in person. That made me feel pretty good.
The Learning Behavior Specialist 1 (LBS1) is an Illinois-based special education teaching endorsement (PreK–age 22) for licensed teachers. It authorizes educators to teach students with diverse learning, behavioral, emotional, or physical disabilities in special or general education settings.
I found out a few months ago that a childhood friend’s daughter has something called DIPG, a fast-growing brain tumor with 9-11 month life expectancy. He and his wife and his other kids, and the sick child, are just living their lives, waiting for their baby to die. She does things like go to the zoo and, were she old enough, register for school. All with the most terrible thing that can happen looming over them.
It really hits hard just to think about it, and I can’t imagine being IN it. I’m sure it really struck you Jasmine to be brought into the vortex of this horrible disease. Heck, even if the child does survive I’m sure whatever they go through to survive will be horrid as well.
I’m glad you are feeling good about being a part of what will make life normal for this kid in the months to come.
cross my fingers for the family.
Sorry, Jasmine.