Written by: Corey Janoff
I found myself lying prone in an MRI tube with my arms extended on top of my two-year-old son, trying to hold his head still so they could get images of his brain without giving him anesthesia. As he’s crying and trying to wriggle free, I was wondering, am I going to be one of those parents whose kid has brain cancer?
Is he going to have to stay full time in the hospital while going through treatment? What are the rules now with COVID – will my wife and I be able to be with him at the same time? Or is only one parent allowed in the room, like it is today in the MRI room?
You might be curious how we ended up in this situation, so let me back up. About a month and a half prior, our youngest son started getting sick. It wasn’t anything crazy at first, but it progressively got worse over the ensuing weeks.
The first sign of alarm was when he started throwing up in the middle of the night. At first we thought maybe he had a bug, but then it started happening several times a week.
We contacted his doctor and they told us to monitor his vomiting and start keeping a log of what he eats along with when he throws up, in case it’s a food allergy. We did as we were told and kept the food & puke log.
We started feeding him bland foods in hopes that would calm his upset stomach. Toast, crackers, plain noodles – you know, the things you are supposed to eat when your tummy hurts. That didn’t help.
We also noticed his belly was really bloated, but the rest of his body and face were thinning out. He always had a bit of a belly and we thought maybe he was going through a growth spurt.
What really started to concern us, in conjunction with all of this, was his mood had changed. He used to be a happy baby & toddler and was very content playing by himself. Now he was clearly feeling very uncomfortable; whining all the time and all he wanted to do was be held. When I wasn’t working, I ended up holding him non-stop and toting him around the house like a little monkey clinging to me. Hard to get anything done like that.
He kept getting more and more uncomfortable and was getting sick more frequently. We called our pediatrician again, who is awesome by the way and told us to bring him in so she could see him right away.
As with any doctor appointment, the first thing they did was get his height and weight. He had lost several pounds since his last visit a few months ago. “That’s not supposed to happen for someone his age,” his pediatrician told us.
“We’re going to get to the bottom of this,” she affirmed. “We’ll run labs today. We’ll get him scheduled with the pediatric gastroenterologist, as his symptoms seem to be GI related. I’m ordering a brain MRI, I’ll call the hospital to make sure he gets in ASAP. I want to rule everything out.”
On one hand, it’s very thorough and amazing that she’s tackling everything at once to get us an answer as quick as she can. However, I want to get a scan of your child’s brain in case he has a brain problem, is a tough thing to start thinking about in the moment.
The initial blood & urine samples were received that afternoon, and everything looked great. There were still a few other things to test for that weren’t initially received, but they assured us they would get those results tomorrow.
First thing tomorrow morning was the MRI as well, so hopefully we’d have some clarity in the next day or two. Our pediatrician was already phoning the radiologist to make sure the images got read right after they were taken.
Back to the MRI tube. Amazing that we can get images of our insides without cutting us open. That being said, you’d think with all the advancements in technology, they could find a way to take those photos faster. It’s like we’re in the 1800’s and have to pose for 45 seconds so the camera can capture everything without it blurring.
Also, the noise! Why are MRI machines so loud? That definitely doesn’t help matters when you’re trying to keep your two-year-old calm and still.
Once the MRI was complete, a few hours later we got a call from the pediatrician. “Images were clear enough. MRI looks good.” Phew. “So that’s good. On the blood results though, his celiac numbers are through the roof.”
We were about as elated as one could be for finding out their child likely has celiac disease (an autoimmune disorder where your small intestine gets destroyed when you ingest gluten, making it difficult to properly digest food and extract essential nutrients).
We can handle celiac. No gluten will be an adjustment, especially since all of my favorite foods contain gluten, but it’s manageable.
There are a couple of blood tests they do for celiac disease. One of the tests was testing his gliadin levels. If it’s above 20, there is a good chance he has celiac disease. His levels were over 5,000 (they stopped counting after 5,000, that’s how high they were).
We may as well have had an IV of gluten hooked up to him with all the wheat we had been feeding him (bread, pasta noodles, crackers, etc.). Thinking those foods would help his upset stomach, we were instead making matters worse.
“I’ll call the pediatric GI specialist’s office to have them call you to get him on their schedule,” our pediatrician continued. “If they don’t get him on the calendar within the next two weeks, let me know and I’ll call them back to make it happen.”
Did I mention she’s awesome?
The GI office called us shortly after we left the pediatrician. They could get us in the next day. Incredible. I figured it typically would take months to get in to see a specialist.
The pediatric gastroenterologist looked at him and said he seems like the typical celiac patient, so that is most likely the issue. The only way to know for sure is to do an endoscopy and biopsy his small intestine.
They were able to get that procedure scheduled for less than two weeks later. Immediately after the endoscopy, while our son was coming out of anesthesia, the doctor showed us pictures of his small intestine.
Normal people have these things called villi lining the walls of their small intestine, almost looking like blades of grass in a lawn. Our son’s small intestine looked like the lawn was mowed down to make a putting green.
“We should have the biopsy results within a week, but it’s a pretty safe bet to say he has celiac after getting a look in there.” Sure enough, the biopsy results confirmed the diagnosis.
This story could have ended up a lot worse (as already mentioned with the brain scans). We’re grateful he was diagnosed as young as he was. He has already regained his lost weight and then some, and his mood is back to normal.
Some people can have permanent damage to their small intestine if celiac goes undiagnosed, which can lead to a slew of other medical problems later in life.
Unexpected Things Come Up All The Time
The point of this story is to illustrate how life happens and unexpected events happen all the time, so prepare yourself for them.
Morgan Housel has written about how, if there is a 1% chance of a horrific natural disaster happening in a given year, and a 1% chance of a terrorist attack, and a 1% chance of a global health pandemic, and a 1% chance of hundreds of other things happening, odds are pretty good that something crazy will happen every year. We just don’t know what.
Expecting the unexpected is why we encourage everyone to have an emergency fund of about six months’ worth of living expenses saved up in cash. You need to repair your car or your house, have unexpected medical expenses, lose your job, you name it. Stuff happens all the time that you didn’t expect to happen, and it costs money.
Plan for that.
Live Below Your Means
If we were unable to get in to see a GI specialist for our son as quickly as we did, and the bloodwork didn’t point to celiac disease, I was prepared to call up a GI friend in Los Angeles and see if he could get us in to see someone in his group, or someone else he knows. I would have flown down right away and paid out of pocket for the visit.
I’m fortunate to be in a position where I have savings and live below my means, so if push came to shove, I could pay for something like that if needed without going into debt. Now, I don’t have an endless supply of money, so if he required prolonged treatment that insurance didn’t cover, we’d be in a tougher spot. But for the initial visit to figure out what the heck was wrong with him, I was ready to go!
It pains me when I see headlines like, Nearly 40% of American’s Can’t Cover a Surprise $400 Expense. For most of the readers of this blog, that hopefully isn’t an issue.
By living below your means, maintaining an adequate emergency fund, and saving more money than you need to, you can absorb these types of blows and roll with the punches. Life won’t knock you down very easily, financially speaking at least.
Insure Risks You Can’t Absorb Yourself
We’ve talked about insurance planning before on this blog. For the big things that you can’t afford to pay cash for when they come up, insurance is a wise idea.
Disability insurance is super important while you still rely on your income. Until you reach financial independence (or fatFIRE for those of you trying to retire early), you need to protect your income in case injury or illness prevents you from working for an extended period of time.
Life insurance is another one that is a must-have if you have people in your life who depend on you financially. Even if you are currently single with no kids, if you plan to get married and have kids one day, it could be smart to use your age and health to your advantage to lock in favorable rates on a life insurance policy.
Review your home and auto insurance policies annually to make sure they are adequate for your needs. Your home value may have appreciated considerably since you purchased it and odds are you haven’t adjusted your homeowners insurance coverage at all since you bought the house (unless you changed insurance companies).
An umbrella liability policy is a great added layer of liability protection for low cost to stack on top of your home and auto insurance limits. That can help protect you if you are ever liable for more than your home/auto insurance policies cover.
Estate Planning is Crucial
You would think a global health pandemic would incentivize people to do some estate planning if they haven’t already done so. If you still don’t have an estate plan, please get one. You’re doing it for your family, not you, to save them hassle and hopefully avoiding disagreements if an unexpected death occurs.
The goal is to make sure your kids are cared for the way you want, and money is handled according to your wishes if something happens to you.
If you don’t have a formal estate plan, the state you reside in makes those decisions for you and there is a chance their decisions won’t be the same as what you would have decided if you had a say in the matter.
Good news is you do have a say in the matter! Get an estate plan! Meet with an estate planning attorney and make it happen.
Stuff happens. All. The. Time. How prepared are you to handle those unexpected events? Do you have a healthy emergency reserve? Do you have proper insurances in place? Do you have an estate plan?
Are you living within your means? Are you spending less money than you earn? Are you saving money just for the sake of saving, because why not?
You never know when you might need those extra dollars. Gluten free spaghetti is more expensive than the regular stuff.
Have you discussed with your partner a game plan for when a flood, earthquake, tornado, or whatever natural disaster could affect the area you live occurs?
Lastly, if you or anyone you know has undiagnosed stomach problems and feels crummy after eating, get tested for celiac. Since our son was diagnosed, both of our next-door neighbors have kids who were diagnosed as well (maybe there’s something in the water in our neighborhood). We’ve also learned of numerous acquaintances who have it.
20 years ago, nobody tested for celiac. Its now more common to test for and it appears the disease is more common than previously believed. You can be asymptomatic for years and then it rears its ugly head one day.
Good news is, there is an easy solution if you or a family member have it – avoid wheat, rye, and barley.
Consult with an estate planning attorney in your state for estate planning advice.