Things They Don't Tell You About Brain Cancer

We’re 4 weeks into our 5-year-old’s brain tumor. We started this with that “twilight zone” feeling… we suspected what was coming, but it was too bizarre to really accept until the doctor was gently showing us MRI images on the computer screen in a darkened room, while the social worker was standing nearby ready to catch us if we fell apart.

There was motion even in that gentle moment, because as soon as they saw we might be able to take it, they were sending us to another hospital for surgery.

Since that moment, it’s been one continual revelation after another. There is really no map. We have been floating downstream, bumping into each next thing we should know.

Some of those revelations:

We won’t tell you everything up-front

As soon as your kid is known to have a tumor, parents should be handed a map, with a big “YOU ARE HERE”, and various dangerous places marked, perhaps “Fever Grotto”, “Chemo Chasm”, “Radiation Risks”, “Management Meadow”, “Sibling Slippery Slope”, and so on.

Maybe it could even be a “Choose Your Own Adventure”. Oh so fun.

You must be ready to manage this yourself. I can’t even count the number of times we have been asked “Oh, have you been told about…?” Um, actually, no. You will stumble across the next step when you must know about it, probably not before. Keep notes as you map out the terrain.

The nurses are awesome

This seems to be the one profession populated by humans that are truly kind and caring. We’ve seen every stripe of humanity (young, old, tattooed, straight-laced, funny-as-hell, …) One nurse was tattooed and named “Patch”, literally after Patch Adams, and he was so amazing with kids. At 2 a.m. I almost felt redundant and even guilty while he was playfully whisking peed sheets out from under my drunk-with-drugs son. How do you possibly thank a person like this?

I have been elsewhere in the medical world and had caretakers that really didn’t give a damn, but in the children’s cancer arena, I’m amazed. If you aren’t amazed, are there other options in your area? We have been at Children’s Primary Hospital and Huntsman Cancer Institute. Both are wonderful.

Never cured

Our operation went well, and the doctor was optimistic, but it is never over. As much as you want to, do not force the doctors to say otherwise.

Life is dynamic, and fragile. For all of us. There are so many stages. It never stops, for all of us. Recognizing this is important.

As a parent, I want absolute answers. But they don’t exist, and pressuring the doctor to the point that he gives you near-absolutes isn’t beneficial. Long-term survival rates differ. Life is day-by-day for all of us. Treatment itself has risks.

Wikipedia says medulloblastoma has survival rates of:

60%, 52%, and 47% at 5 years, 10 years, and 20 years, respectively, with children doing better than adults.

In our case, the doctor was positive. But what does that really mean in our situation, and in what timeframe? Survival rates naturally fall over longer timeframes. Keep the hope, but accept what is. All is a journey.

Someone needs time off or a flexible job

On our current track, we are looking at a full-time job to get our son through surgery, radiation, and chemo. My wife is shouldering most of this burden now that the surgery is past, yet I am ready to drop-and-run if needed.

We are lucky that I have this flexibility. But the USA healthcare system is broken, so I do recognize that I am lucky.

Titties optional, brain required

I admit, I am biased against the Komen foundation (the anti-tittie-cancer-people) after it cut funding to Planned Parenthood over contraception a year or two ago. This is mixing of religion and real-world healthcare, and that makes my blood boil like no other. Fuck Komen and the Puritans behind it who let religious beliefs get in the way of womens’ health.

In the wake of that “scandal”, Komen’s contributions fell 22%… and then recovered. It’s that recovery that depresses me, to be honest.

But how precipitous was that 22% decline? Brain cancer research is 100 years behind breast cancer research. It is lagging behind. It is the forgotten cancer

In my view, that 22% fall was not sufficient. That money should be moved elsewhere (ideally somewhere less religiously politicized) where science needs to be advanced more. Oh… let’s see… brain cancer?

After all, you can live without your titties. You can’t live without your brain. And recovery after brain surgery and radiation seems to be a bit more nuanced.

Participate in research

Even if ludicrous amounts of money are not out there (pink ribbons, anyone?) research can be had.

While we were in the PICU and before our son was even completely awake from surgery, a research assistant came knocking. We were, after all, on the University of Utah campus. Her professor is researching possible genetic links to brain cancer. So far, none are known.

My wife and I gave blood samples, consented to sharing tumor tissue samples, and filled out a family history questionnaire. It’s not a million dollars like the pink-ribbon-people have, but data is where truth can be found. Maybe we helped.

Watch for ways you can help in research. They may come knocking.

Social workers are everywhere

Social workers are everywhere.

Hospitals have them. Insurance companies have them. If you are lost, ask for a social worker. They are out there.

I’m sure their motivations differ (insurance companies want to “manage” the costs, after all) but in my experience the people have had true motivations. I have been asked “Do you have any questions?” by a social worker ten times for every question or need I actually had.

My real problem was not knowing what questions to ask. Social workers stand ready to answer if you can ask. Hopefully this list can help.

It could cost a million dollars

My son’s port (just the plastic doo-dad with a rubberized hose) cost $1600. This looks to have far less technology than a $5 computer mouse. Installing it cost roughly $12,000 (doctor, hospital, recovery, anesthesia). I understand the care needed to ensure it is all sterile, but holy fuck. Somewhere in here is the key to fixing the US healthcare system.

(2016 update) Similar cost ($10k+) to remove the “$5 mouse”.

Having a home nurse visit to drop off supplies will cost $252. Supplies extra.

I hope you have either no insurance, or great insurance. If you are somewhere in between, you will be bankrupt.

HSR, HRA, and FSA may be useful.

Some insurance companies also offer financial assistance, with sliding scales based on the poverty level and extenuating circumstances. Ask.

(2017 update) My wife keeps careful track of costs, so now just over two years in, the total [allowed] insurance cost is $350k. MRIs are planned for 10 years out, and other details, so we may asymptotically approach some $400k line. I hope we are so lucky, so to stop there.

Keep a 3-ring binder

From day one, start a 3-ring binder. Create sections, and put all paperwork in it.

This may be especially important if you are seeking financial assistance.

You will be amazed how often doctors and nurses ask you things that they should already know. (Did I mention already that the US healthcare system is broken?)

  • What type of cancer is this?
  • What was the result of the last blood draw?
  • What are we doing today??
  • When did he last have medicine X?

These people are well-intentioned, but how many times have I wanted to say “Um, duh?”

Even the signs on the wall say “You are your child’s best advocate.”

If you already have insurance, don’t even think about changing jobs

Yeah. Re-read that title.

I had a cool job offer, but we have collected more than a dozen business cards in the cancer folder. The number of actual billing entities are certainly larger. Try to re-weave that rope on another job. It’s not easy.

Yet again, the US healthcare system is broken. Healthcare should not be focused on employment. This is an artifact – an accident! – of history.

You can’t work remotely

I’m in IT so, in theory, I can be with my son at the hospital and yet work remotely. Everyone is happy.

In my experience, it doesn’t work. Some hospital networks block GRE packets so VPN is broken. Or even if I can can establish a VPN session (which takes several minutes to get all situated through the various firewalls), I need 15 minutes to get in the mindset of what I was working on.

But if things are important enough that I’m at the hospital, there is almost never a 20 minute quiet session. There is always something demanding attention (empty IV bag – notify the nurse. Questions from the doctor. Calming my son. Something.)

Cancer is a full-time job for someone to manage. If you’re at the hospital, it’s because you’re needed.

Your life’s focus will change for a year, at least

Our son’s prognosis looks good, and yet the treatment extends for roughly a year.

Kid’s school, continuing adult education, job changes, vacations all are reconsidered.


Dealing with siblings in this situation is a book in itself. Jealously is real.

You will feel guilty

Seriously, how many times can you calm a child? Children have an innate understanding of fairness, and this isn’t fair.

Thankfully they also have short memories, usually.

Home nurses

Yes, you will probably have a home nurse. Hopefully yours is as cool as ours.

The home nurses will train you (didn’t you realize you had to flush your child’s port with blood thinner every 12 hours while it is accessed? We didn’t either, until after it was installed. If the port were a car, you could invoke the lemon law.)

Syringes with IVs attached make awesome squirt guns, however. Perfect for young boys (and parents, too). BONUS!

Run, cat, run!

You will be a germaphobe

Chemotherapy kill the immune system. Fever means a trip to the cancer clinic.

Anyone who enters the house must use hand sanitizer and put on a mask.

You will set aside an area of your house for sterile supplies.

Keep a bag packed

A minor fever could (should?) be a clinic visit. With a suppressed immune system, a fever could spike dangerously if there really is an infection. You will make multiple false-alarm trips to the cancer clinic for fevers.

You might not have a good night’s sleep during this year, either.

Make-a-Wish may offer (but how?)

I thought Make-a-Wish was only for terminally ill kids? Apparently not. But how is it possible to accept what they might offer, when we are managing chemo and a sanitary house?

We hardly dare leave the house, but you suggest Disney Land? WTF?

Radiation has serious side-effects

Hell, surgery has side-effects. We survived that part. At this point, crossed eyes strike me as cute.

But the side-effects of subsequent treatment is one area I haven’t yet wrapped my head around. I can list the effects of radiation, but I haven’t come to terms with them.

  • Stunted height
  • Lowered IQ (8-10 points)
  • Secondary cancers
  • Sterility

Personally, the physical things matter less, even though that’s what has to be managed day-to-day. It’s the IQ that is a gut-punch for me.

And chemo has its own side-effects. At least us guys can band together and pre-emptively shave our heads. Fuck hair, we never liked hair anyway.

It’s a full-time job managing well-wishers

Our neighbors are awesome and I love them. And yet… it’s not that we need anything. There isn’t anything to be done. Our freezer is now stuffed with frozen meals, thank you. But… the year ahead is still there.

After that first whirl-wind passed, it has become just the daily “How are you doing?” emails and texts. Is “Love ya much, but ask me in a year” a valid answer?

And as an atheist, the standard “I’m praying for you” comment just throws me for a loop. It is well-intentioned, and yet so amazingly “out there”. Are you serious? I want to either debate the problem of evil with these people, or just smack them. But none of that helps. Regardless, it’s mentally draining. “Thank you for the well-wishes, but… but… but…”

Managing your own emotions while simultaneously managing everyone’s inquiries is difficult.

Ask for a CD!

Hey, as a bonus, ask the MRI people for a CD. (It’s like the ultimate selfie, no?) There are open-source programs to slice-and-dice those MRI brain images. I’m running Aeskulap on Debian, currently.

My son thinks his MRI looks like a cool Halloween pumpkin! Maybe we’ll do that one next year!

December 5, 2014
2135 words


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