Friday, May 9, 2008

Que sera sera

With each of my pregnancies I remember being most nervous from about 24 to 28 weeks. After the brief period of time I spent as a medical student in the NICU, those earliest of premies haunted me. Before 24 weeks you lost the baby. Devastating, but the decision has been made. The more time that goes by, the better the baby's outcomes. But there is that ugly gray zone, full of decisions that parents shouldn't have to make. Do you keep trying, hoping, pushing? Or do you let go?

I avoided the premie decision, but I am faced with my own decision that parents shouldn't have to make. Henry has done fabulously well with chemo, and his tumor has responded. But his tumor and cell type is very aggressive, and likely to return, at which point palliation is our only option. So now we face radiation.

Radiation does not share the sandbox well with little brains. For a three year old, full dose radiation leads to "neurologic devastation" in the words of our radiation oncologist. When they play with decreasing the doses, cancers recur more often.

So we're faced with any ugly decision. How much to use? Do we use any? We could do nothing, and hope for the best, with the thought that a victory would be a full one, and Henry's cognition intact. Or we could choose to give some lesser amount, and know that we are forcing upon him cognitive and behavioral challenges that we cannot predict, without any guarantee that we are improving his chances of survivial.

This is about where my brain enters a tailspin. How much is too much? How much is enough? If he was born a 'special needs' child, I wouldn't love him any less, so why does it pain me to think about him that way? What are my goals for him? What would his goals for himself be? What is the nature of self, and are we altering what makes Henry Henry?

Headache much?

What bothers me most is my wide vacillations in how I feel about the radiation. One hour I don't want it at all, que sera sera. The next I feel the opposite.

This is the first real treatment decision that we've had to make for Henry. It's a heavy one.

13 comments:

Bongi said...

this post really moved me. It must be a terrible place for you to be. I can't even imagine.

Emily said...

My heart goes out to you. I wish you had a better, easier choice to make now. I'll keep you in my thoughts today, and I'll keep hoping for Henry's full recovery.

net said...

prayers ascending for your family as you wrestle with this decision, doc.

rlbates said...

Dr Smak, I will just echo the previous comments. My heart goes out to you.

SOCKS said...

It breaks my heart that you have to make this decision and to watch you struggle with it.

I would trust you to make that decision for me - you have the strength, compassion, knowledge and love to give him the best that you can. He would trust you if he were able to understand.

Scott said...

Oh, I am so sorry. Oncology is the devil.

I can say from personal experience I would never do radiation or chemo again.

Your choice is hard. Do you believe in God?

Neumed said...

I can't imagine being in your position; having to make a decision without know what the ultimate outcome will be. Our prayers are with you.

Anonymous said...

What a terrible decision for you to make. Whatever you decide will be the right thing for Henry. I agree with Socks, Henry would trust your decision if he understood. You are in my thoughts!

Jen said...

I can't imagine having to make that decision. My thoughts are with you.

Doctor David said...

Dr Smak... You really are in an awful place. Heavy days, indeed. I'm not sure how parents end up making decisions like these for their kids. If you need a friendly ear, you know where to reach me.

TBTAM said...

Echoing all the previous comments. This is a decision no mother and father should have to make. And yet, you must make it. My thoughts are with you, and I pray for your strength and peace with your decision, whatever it is.

adventures in disaster said...

I guess the only thing you can do is make a list of pros and cons. Physically writing this list can make things clearer.
You also need more information, you need to meet with and speak to families that have already made these choices. You need to see the outcomes to make the choices.
You need to know what neurologically devastating means in real terms because everyone has their own bias and definitions of what they believe is "devastating".
Without information you become frozen.
You have to see and then decide which battle you are going to be able to fight.
And then you have to decide if the cure is better or worse than the disease.
You need to find a support group with families that have traveled this road before you, their outcomes will give you an advantage when you make your choices.

I have great faith that you will choose whatever is best for your child.

janemariemd said...

What a frightening thing you are facing! Iam sure you are gathering the information you need, but it seems to me that this is the time for one of those "decision trees" that are meaningful usually just to egghead academics who do decision analysis. There are 4 categories of possible outcomes:

1) No relapse without XRT
2) Relapse without XRT
3) No relapse after XRT
4) Relapse after XRT

Can you get numbers for the frequencies of patients who fall into each group? For me personally, I would wonder, which would be worse--to have him relapse when he didn't get XRT, or to have him survive with severe disability and be cured, or become disabled and then relapse? I'm guessing you'll go for the cure, and I probably would too.