Friday, March 28, 2008
We have been so lucky with his response to chemotherapy so far. But he will not emerge unscathed, even with the best of luck. The doses that he is getting of carboplatin this round will damage his hearing enough that he will require a hearing aid for the rest of his life.
His balance improves all the time, but is far from normal. He can now get up from sitting to standing without holding on to furniture, but I don't think that he could with his eyes closed. I see him use visual cues to keep his body upright. He is running and jumping now, but when standing next to another kid his age he looks frail, uncoordinated, unsteady.
His left eye remains out of alignment from the right. People tell me they don't see it, but I do. I can see that his brain is suppressing it's signal, and he uses only his right eye to see. This may be rectifiable, and we plan on addressing it once chemo is over.
There are so many families who have lost children to this. We may yet join them, and I feel horribly guilty to be anything less than thankful for the success that we have had so far. But some days when I look at him, his body is already so broken that it kills me. Cancer can be a private thing. No one call tell if you are a breast cancer survivor, unless you tell them.
But this damn thing will be written all over him for the rest of his life.
When we are talking, playing, laughing together, it's just Henry I see. But when he's trying to run through the yard, I see the cancer trying to trip him. It laughs in his ear so he can't hear the birds singing. It stands in the way so he can't see the beautiful nuances around him.
My baby is broken.
Sunday, March 23, 2008
I see him looking for control in other places, understandably. He's certainly had some behavior regression - who can blame him? And when I'm rested, objective, on my game, it's all very clear to me why he's behaving the way he's behaving. Unfortunately, sometimes I'm not rested, objective, or on my game.
During Henry's last hospitalization, he gradually added layer upon layer of ritual we had to perform to get him to do things like take his medications or cooperate with his vitals. The penalty for one misstep in the temperature - blood pressure - pulse ox dance was a serious tantrum. By the time we were discharged from the hospital he had the rounding team turn around and face the wall so that one physician could examine his mouth. I had to put lotion on the leg of his choosing before putting the blood pressure cuff on - and there was only one nurse that was allowed to do that. I had to place the doctor's stethoscope on his chest so that he could be examined. It really was getting ridiculous.
But what do you do? Play along, that's what. Thankfully, the nursing staff and the physicians are incredibly understanding, and patient. I suspect Henry's not the first to exert his control this way.
There are so many reasons to dread his next chemo admission. Strangely, this one really ranks up there for me. The thought of (at least) 24 days in a small room at the whim of a three year old is suffocating. Of course, we'll do everything we need to do to soften the admission for him. But vitals are every four hours....for 24 days.....
I find myself trying to talk him down from some of his rituals, thinking "Jeez, Henry, do we really have to go through this entire bit just to take your temperature? You know we always eventually talk you into it..." His anxiety and anger and tantrum escalates till I cave, every time.
What I realize now is that he's probably thinking the same thing. "Jeez, Mom, you know that you have to pour me fresh juice that I won't drink and wait five more minutes and then five more minutes and then till the next commercial on TV and then listen to me fuss before I'll take my medicine. Why don't you just accept it and quit trying to talk me out of it?"
Wednesday, March 19, 2008
We are truly blessed with our insurance. I got a bill today for last month's physician's fees, for $11,246. At the bottom of the statement in bold letters it said "YOU OWE $40."
I must admit, even as a physician I don't understand health insurance as well as I could. And all I have ever looked at when selecting health insurance was the cost of the generic medicine co-pay, which was the only place my family ever used our insurance with any regularity.
We got lucky. Our insurance is excellent. Our out-of-pocket expenses have been entirely manageable.
But I'm learning much more about medical bills. And the following bothers me:
Charges for our rounding physician during admissions: $195
Charges for the anesthesia for a bone marrow biopsy (30 min): $480
Charges for the radiologist to read the brain and spine MRI: $2520
I would guess that the rounding attending physician devotes between 20 and 30 minutes to us daily, of cognitive services. The anesthesiologist billed specifically for his time, at 30 minutes. One could argue that that's a higher risk venture, and therefore worth more money. Ok, but more than double?? I'm not sure I buy that.
Now, not being a neuroradiologist, I really don't know how long it takes to read a brain and spine MRI. But my guess is that it doesn't take much longer than an hour. And I certainly don't intend to disrespect my colleagues, or be anything but incredibly grateful regarding the services that they have performed for my son. But something is wrong here.
Our oncologist fields our phone calls and emails. He spends large amounts of time with us answering our questions, scheduling numerous followup appointments, getting approval from our insurance company. None of this time is billable. He is not reimbursed at all for it. He's the primary care sucker for Henry.
And we wonder why more graduating physicians aren't going in to primary care.
Something isn't right.
Sunday, March 16, 2008
"Why did I get sick?"
"When will I get my tubies out?" (his Hickman)
"How does the medicine get from my tubies to my head?"
"Why will germs hurt me?"
"Why do I have to go to the hospital again?"
Some have been tough to answer. I'm reminded of the joke of a kid who asks his mom where he came from, and she gives him the whole birds and the bees, to which he replies, "Mom, Jimmy says he's from Cleveland. Where did I come from?" I'm not always sure what he's asking, but so far he seems satisfied with my answers.
It's been over 5 months since he was diagnosed. In all this time, I've never used the word cancer with him. Of course, he doesn't know what it is anyway, so it isn't the concept that's bothered me. But I couldn't bear to hear that word come out of his little lips.
I've been realizing lately that describing his cancer as "being sick" is a little misrepresentative, and might cause undue anxiety with subsequent colds or minor illnesses. So I took a big gulp and used the C word. He used it back, just once. It wasn't as bad as I thought it was going to be.
Friday, March 7, 2008
Wednesday, March 5, 2008
Michael Pollan is a journalist who’s recently published several non-fiction books about food. His latest, In Defense of Food, covers the food industry and nutritionism.
As expected, he’s not happy with either. If you’ve ready any of his prior stuff you already knew that. He explains the evolution of nutritionism, which attempts to boil a health finding down to a nutrient, mineral, or oil that can be neatly packaged, promoted, and added to various food products. Its obvious partner is the food industry, which, in partnership with the FDA, AHA, or other ‘authorities’, places health claims on all that shiny plastic wrap.He freely admits that he gives the whole book away on the cover. Three rules: Eat food. Not too much. Mostly plants. The rest of the book just backs this up.
He hits a lot of great points. He attacks the ever-tempting connection between correlation (people who drink coffee get less diabetes) and causation (coffee prevents diabetes.) Do non-coffee drinkers start the day with a 40-ounce Pepsi? He attacks the lipid hypothesis which has driven our national nutrition policy for decades (with scant evidence to do so), and may have contributed to the obesity epidemic due to the burgeoning low-fat food industry. He exposes the Washington lobby money that drives the FDA, and makes you really mistrust all the "healthy eating" advice you'll ever hear. He discourages looking for the 'magic bullet' in traditional diets, and encourages rather eating the whole thing.
Then he lays out his advice for healthy eating. Most of it I love. Here's a small sampling:
- Eat meals.
- Pay more, eat less.
- Do all your eating at a table.
- Don't get your fuel from the same place your car does.
Overall, a good read. It will change the way you look at food, especially at the grocery store.
Tuesday, March 4, 2008
So I get a little pleasure from being right.
Henry has the rash from hell. It started over a week ago. I kept bringing it up to the rounding team, as it worsened day by day. And when it started to look impressive, I asked for a steroid cream to help.
Now, I know a little about a lot, but I know nothing about rashes in kids who are severely immunocompromised. Steroids suppress immunity. I wasn't sure if it was a good idea.
Hydrocortisone 1% was suggested, and prescribed. A little itty bitty tube arrived.
Steroid creams are a great example of a place where academic medicine and real medicine don't exactly jive. In residency, we were warned against using anything with any strength for any significant period of time. Everyone got started with 1% hydrocortisone, and maybe, just maybe, if the rash was really bad, you'd start with something higher.
Enter real medicine. My first year of practice I used a lot of hydrocortisone. There's a reason it's over-the-counter. No self-respecting rash gets better on hydrocortisone, at least within a reasonable period of time. (I only use it now on things that would get better with nothing.) I referred a bunch of people to see derm, since I wasn't helping them with my 1% hydrocortisone. And I noticed something: they were pulling out the big guns, the super high-potency creams, for everything.
So I did what they teach you in family medicine residency, that they don't seem to teach you in speciality residency. All things in moderation. I started using medium potency creams to start with on most steroid-responsive rashes, and rarely pulled out the big guns when I thought it necessary. Guess what? Those rashes went away.
Anyway, back to the story. None of the rounding team knew what the rash was. I've hemmed and hawed my way through treating enough rashes to recognize that when I see it. The hydrocortisone was presented like manna from heaven. Hmmm....except it didn't work. His rash has been aggressively worsening.
So the derm docs showed up yesterday. The third-year Hopkins (church choir "Aaaahhh") medical student arrived, and danced circles around me academically. (Honestly, he looked 14. I felt like I should be introducing myself as "Dr. Gump. Dr. Forrest Gump.") The whole team showed, asked a few questions, and kicked around differentials like zinc deficiency and graft versus host disease, which I didn't even know you could get that with an autologous transplant. In the end, they did what all good dermatologists do: they put him on a steroid cream and recommended a biopsy if it's not better in a week.
Did I mention that it was the same steroid cream that I would have put him on a week ago?
"You can name it whatever long fancy latin name you need to, but in the end, you're just going to put a steroid cream on it."
--my senior resident when I was a medical student, on dermatologists
Monday, March 3, 2008
Doctor David's Blog is written by a pediatric oncologist at Hopkins. We got to meet him a few weeks ago as he was the attending on service. Not only is he a great doc, he wears great shoes. Plus, my feet (rather, my socks) made his blog!
Most of my links are to medical blogs, but lately I find that I'm reading some others regularly too. I was directed to Not Quite What I Had Planned by a reader's comments. This is a busy mom with a lot on her plate, not the least of which is a child with cancer. She is great at using humor to combat life's stresses. It's good for me to see families on the 'other side' of cancer.
Dad Gone Mad is nothing short of hilarious. I laugh out loud at this blog more than any other I've ever read. If you've got young kids, or remember having young kids, you'll like this one. Oh, as long as you don't find cursing offensive. I warned you.
I'm looking for some great gardening blogs to inspire me. There's nothing better than getting your hands in the dirt on these sunny spring days. If anyone has any favorites, let me know! (Addendum: I found one on my own. But still let me know about your favorites!)
And last of all, the good news! Henry's white blood count has rebounded, and he is improving by leaps and bounds every day. We hope to be out of the hospital within the week. Thanks to all of our wellwishers!