Friday, March 28, 2008


I just waved goodbye to Henry as his father drove him to the hospital for his last chemo admission. If we are very very lucky, this could be the last one, the last terrible thing we have to do to his little body.

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.


chartreuse said...

I can't imagine anything helpful or comforting to say to someone going through such a difficult time. So I just want to say thank you for continuing to blog and share your story with us readers -- I'm a medical student and I hope that what I read here will be one of the many experiences that will influence how I interact with children and families one day.

rlbates said...

Take care Dr Smak.

Xavier Emmanuelle said...

Oh Dr. Smak, I'm so sorry for all that has been happening. We're all thinking of you and wishing for the best for Henry and the rest of your family. Take care.
- Xavier (have been reading for ages, but haven't commented in awhile)

shadowfax said...

Wow. That was hard to read. Thanks for sharing it.

Don't forget -- he's also strong, and you've seen the evidence of that in how he has endured the challenges he has faced. Mourn for the scars he will bear, but don't forget to rejoice in the courage, strength, and resilience he demonstrates as he fights and hopefully prevails in this struggle.

Thinking of you.

Doctor David said...

Dr Smak, I have to agree with Shadowfax. Mourn Henry's scars, but celebrate his strength. The kids I've seen make it through come out the other side and do amazing things! Henry has a bright future ahead of him, and with parents like he has, he'll get there!

Anonymous said...

Dr. Smak,
I pray for Henry and his family.

Jen said...

Take care Dr. Smak. My daughter's still got some "visible" effects from her cancer (as well as some invisible ones that few people see), but I have to say that she's not only overcome them, but in some ways they've helped to open new doors for her. She's older (12), so she's a bit more concerned with the "aesthetics" of her body right now and that's difficult for her, but all in all I think that it's made her more empathetic, supportive, caring, and braver than she ever would have been without it.

(I'd still rather that she hadn't had to go through it, to say the least, and it will always be hanging over us, but sometimes a few good things do come out of what we see are negatives).

He's already shown that he's a wonderfully strong boy, and with a family like yours I have no doubt that he's going to have a wonderful future.

Our kids face tremendous difficulties, and watching your child struggle due to something they have no control over is the most horrendous thing imaginable. It's okay to mourn that and his difficulties, and still love the child that you have.

We're thinking of your family.

SOCKS said...

Dr Smak,

Thank you for sharing so intimately.

You warned me that this post would be hard to read but I thought you were referencing "poems in the lunchbox" .

This took me by surprise but, as usual, your thoughts and concerns aren't unique. Your way of expressing them and facing them are what is so powerful about you.

Henry is your baby and you are his Mom - you are both so fortunate to have each other.

Anonymous said...

Broken but fixable. Henry is currently in his "getting fixed" stage. He may have scars and a few cracks, but still is beautiful and precious. He will see and hear differently, maybe even better, than what we see and hear. His balance will improve, or he will correct it himself. He is an amazing child with potential that none of us even recognize yet.
Miss Susan

the planet of janet said...

oh honey, this post just breaks my heart.

i'm praying for you all...

Anonymous said...

From a Gillian Welch song but edited...Henry's not broken but he's badly bent...

"Sister, when you cry
I feel your tears
Running down my face"
- Dave Matthews

Câmera Digital said...
This comment has been removed by a blog administrator.
Brigid said...

I just found your blog...and Ive spent some time reading back, through your posts about your son and the battle against this cancer. It brings back such memories for me.

When I was in nursing school, my only sibling, my 15 yo brother, was diagnosed with Burkett's Lymphoma.

I know it is harder on a parent to watch your child go through this, I was hard as a sister to watch. I think it was 1000 times worse on my parents than it was on me.

He too, had scars and issues r/t the cancer and treatments. One of his eyes stopped working, he lost all sense of taste for months on end, and of course we did the whole gaunt, pale, fragile look too. And he handled it so bravely. I was really proud of him.

Reading this post was so deep, so to-my-core-emotions that I had to reply.May you be blessed with wisdom, and blessings on your child of strength and well being, with the ability to shine and smile and heal.