Spencer Dowling - 5/21/2008

**update 9:15pm by Melis** I read this last week and immediately asked Steve if I could post this on our blog. His response was this: "Hey. By all means, post it on your blog. Welcome to my train wreck! Mind the twisting wreckage, step right this way. I believe they are still serving dessert!"

Spencer passed away today. We didn't know them - personally - but I think we felt we knew him from his dad's wonderful blog posts. Please visit their site if you feel like getting a taste of what it means to really LIVE, even in the face of such overwhelming circumstances.

Spencer's dad recently posted on ACOR, the mailing list for us NB parents, his thoughts on where they were then in Spencer's fight against NB. It's a beautiful essay, and epitomizes the spirit that Spencer was blessed to be surrounded by. With apologies to the Dowlings, this has to be made public.

Date: Thu, 15 May 2008 18:03:27 -0700
From: Tracey & Steve Dolling
Subject: COPE: Forgive Me If I'm Not Miserable

I can't post everything on the website. Too many people read it. But people here understand.

Sheila and Suzanne got a bit of grief today. Sheila is Spencer's oncologist. Suzanne is his primary nurse. Together they know us a family at least as well as, well, our family. They are family. We make all our important decisions together.

Today, there was a meeting among the medical staff about Spencer. Some concern was expressed that perhaps unwarranted hope was being passed on to us by pressing ahead with chemo when there is really no reason to be hopeful. There was also some alarm that we seem to walk around the hallways smiling and generally cheerful. It was observed that I am quiet. I guess the overriding concern, whether stated or not, was whether or not Tracey and I are at all plugged into reality or if we wander about in a serious state of denial.

Forgive me if I'm not miserable.

Believe me, I am miserable. But I've had six years of training. I fake it well.

A long time ago, Spencer was statistically dead. That is to say, the likelihood of attending his wedding was infinitesimally small. The likelihood of him ever being a teenager was tiny. Problem was, we had this vibrant, very much alive, little boy to contend with. So we had choices tomake. We had to decide if every day Spencer was a little closer to death. Or if every day he was alive and we should damn well live the best we can. If it's not obvious which choice we made, then we have failed.

We might very well be on a train headed down the tracks with the bridge washed out. We do of course have the choice. Shall we run to the back ofthe train, hide underneath a seat, and moan and whimper? Or would it be better to get dressed for dinner, head to the dining car, and have a few cocktails while enjoying the scenery? If we could jump off the train, believe me we would. In the meantime, have you seen my jacket?

So if you see me hopeful about the chemo my son is getting, don't worry. I'm under no illusion that all of a sudden things will be better and remission is just around the corner. I don't believe that any more than any one else. Trust me, I do the mental processing 24 hours a day. Do I believe the chemo might relieve his pain and make him feel better, and maybe we can go home have some fun or get another pass and go go-karting or whatever? Absolutely. It is possible.
I also understand that we are not waiting for God's gentle hand to guide him to a better place. Neuroblastoma is an ugly beast that will rip apart his body with painful tumors. So let's look at the alternatives. Being treated to death is not the worst thing that can happen.

So no we haven't crushed Spencer's hopes and told him he is dying. Last time I checked he was alive. I think they call that living. Will we come to that point? Yes. Likely. We discuss it every day or so. Have we taken advantage of all of the wonderful palliative services that are available to us? No. Thanks. We're comfortable for now on 3B with the people Spencer knows giving him the care that he is familiar with. We don't need to get freaky and fill our house with hospital equipment or go and live at Canuck's place. Maybe later. Not now. And don't ask, we know it's there for us if we need it.

So suck it up. Get over it. The Dollings aren't crazy. Their heads are screwed on tighter than yours. We've got a job to do. Let's head for the dining car!



Anonymous said...

That is incredibly powerful and also insightful...none of us (parents of kids without cancer) can possibly understand the journey you are taking, but this definitely helps. Thanks for sharing. As always, we're thinking of and praying for you ALL. Kristin B.

San Diego Mom said...

I couldn't read it without sobbing. What an inspirational essay.
People are funny sometimes. I think it's easy for them to sympathize with people who cry in the midst of their tragedy. When they see those people smiling and laughing, they wonder; how can they be so happy, I don't think I can handle it! Well, I think it does require incredibly strong will power and love to smile at the face of such deadly disease. If they can't see that, well, shame on them. In the mean time, I would like to send my cheer, never ending respect and moral support to all the warriors and their families. Thank you for sharing this note. Shiho

deb schwedhelm photography said...

i'm so sorry and sad to hear about spencer. what an amazing essay his dad wrote. so powerful. so strong. i'm so glad they never gave up hope and let spencer live his life to the fullest!

Anonymous said...

I've been following Spencer's site since you emailed it to me. I had no idea his condition was so grave - but I guess that's the whole point! As I read on another blog, the trick is to know the facts but live like you don't. Spencer's methadone enhanced racing will always make me laugh and smile. He lived LIFE TO THE MAX. Thanks for sharing the site and his dad's letter. Here's to today! xolisa

Anonymous said...

This essay hasn't left my mind or heart for the past 2 days.
So how many times have you guys heard "I don't know how Andy and Melissa handle all they are faced with while always being so strong and upbeat?" None of us really realize or can even fathom the nightmare that you go through ever day. But you guys choose to LIVE LIFE TO THE MAX! And for that reason alone you both are my heroes and parents who I can only strive to be like.
Here's to a fun, painfree and restful holiday weekend.

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