A New Trial

Published 9 years, 11 months past

Very early this morning, we hit the road for Pittsburgh.  We plan to be back home around lunchtime.  We plan to do this three times a week for the next four weeks.  Twelve days of two and a half hours in the car, an hour or more in the hospital, and then another 2.5 hours in the car, all on a slim hope of buying some time.

Rebecca has qualified for a Phase 1 clinical trial of an experimental drug that might — it might, maybe, possibly, if we’re very lucky — slow or even halt the growth of her tumors for a while.  Not shrink them nor eradicate them; this is not a cure.  It’s a new type of treatment, not chemotherapy, but genetic trickery.  Our research had led us to be very interested in this study, and thankfully we were able to secure a spot and qualify for inclusion.

The fact that it’s not chemotherapy means there should be no toxic or other negative physical side effects, which is a very high priority for us.  Furthermore, for people with Rebecca’s specific genetic mutation, this drug has shown a fair amount of promise.  In an earlier Phase 1 trial of the same drug as applied to adults, one patient’s tumors stopped growing for a period of years.  But then, another’s tumors barely stopped growing at all.  (And we don’t know which kinds of tumors responded in which ways.)

This clinical trial is the first test of the drug in children, to see if it works the same, or better, or worse, as compared to adults.  It’s being managed through the Pediatric Brain Tumor Consortium.  The closest PBTC site is the Children’s Hospital of Pittsburgh, where we were able to be sited.  So off we go.

And we keep asking ourselves: Are we doing the right thing?  Is it worth it?

It might seem like an easy choice.  What’s three mornings a week against a child’s life?  It’s 20-25 hours, is what it is, out of something like a hundred waking hours every week.  That’s almost a quarter of her waking time spent sitting in cars and hospital rooms, instead of being at school or running around playgrounds or coloring or playing with friends and siblings.

Sitting in a car isn’t 100% wasted time, of course; it’s not like she’ll be confined to a blank beige box for the trip.  She can sleep on the way there, and watch videos or play games on the way back — thank you, tablet computing industry! — or vice versa, I suppose; but it’s still a lot of time that could otherwise be invested in other, more interesting activities.  So while there may be no pharmacological side effects, there are serious side effects nonetheless.

And thanks to the MRI that was done Thursday, in order to establish a baseline for the study, we know that she is quickly running out of time.  The primary tumor is noticeably larger than it was five weeks ago, and the flare sites haven’t gone away.  How she’s managed to avoid neurological damage, nobody is quite sure.

Given how little time she has left if untreated, if this drug adds a year to her life, then yes, it’s absolutely worth it, especially if that gives us time to qualify for a study that somehow leads to tumor reduction.  But what if the drug only adds a couple of weeks?  Is it worth it to extend her remaining time by fifteen percent, if a quarter of her life is spent away from friends and home?

On the other hand, what if the drug doubles her time left to live?

On the other other hand, what if it doesn’t add any time at all?

We don’t know.  We can’t know.  We can only guess, and try to be as rational about it as we can be even though we are, essentially, blindly choosing how quickly our child will die, and what her life will be like along the way.

Comments (24)

  1. All of you remain in my thoughts. Hoping for the best possible outcome for Rebecca, for you, and for your family.

  2. As always, thanks for sharing, Eric. Here’s hoping this potential disruption of bad luck is just the beginning.

  3. On the other hand….
    Sometimes you have to trust your gut.
    Wishing you fun on the car rides and a successful trial.

  4. Eric, if there’s anything I or the Pittsburgh web community can do for you during any of these trips, please don’t hesitate to reach out. Even if it’s something simple.

    It might sound really odd, but thank you for continuing to document your thoughts throughout all of this. It’s helped me get through the rough times that I’ve experienced while being a caregiver to my mother throughout her cancer ordeal.

  5. what Rob wrote
    wishing for smooth sailing and plenty of sleep for all (not while you’re driving, but I’m sure you get the point)

  6. I’ve been following your updates for a while, and I check regularly to see how Rebecca is doing. I just wanted to say as a Scientist Mommy that this is the only kind of “miracle” I believe in — finding out that the right treatment is out there. Here’s hoping that this trial will turn out to be at least part of an answer for you!

    It’s heartbreaking that you have to think about a few car rides as time lost from Rebecca’s life; here’s hoping that you can make the travel an adventure (and maybe do something fun in Pittsburgh sometime? Children’s Museum? National Aviary?) and enjoy the time together.

    Wishing all of you safe travels!

  7. I agree with Audrey. You should work some fun activities into the schedule. Pittsburgh has a great zoo and aquarium.

  8. Ya’ll remain in my thoughts and prayers and I wish the best of luck in this new treatment and I praise all of you for your strength, it is an inspiration!

  9. Without knowing how it will turn out, I am confident that you are making the best possible choice, from the choices you have. It is exactly what I would choose for myself, or for my own child.

    I pray many times a day that it buys y’all some serious time, and I believe it well could. But no matter what the results, know that it helps answer a question which the parent who comes after you will have. So no matter what, you are blazing a trail for future parents and children.

  10. Load up your mp3 player. I have to think any transaction denominated in hope deserves a different calculus from those denominated in hours.

  11. You never know in advance, but anything you do for the benefit of your child is right. Trust in your guts and trust in God.
    I have you on my mind so often (actually your’s is one of my two startpages in Firefox).

  12. So very sorry to hear of your daughters illness Eric. Wishing her, you and your wife and family the very best of luck with treatment and coping and progress.

    Love from lots of Canadians to you all.

  13. I think you’re making the right call; the long commutes can, hopefully, just become more fun time spent together. I know some of my best childhood memories are of the rides and not the destinations. Wishing you all the best.

  14. If it’s any comfort, I have distinct memories of being about five and taking long car rides, fairly frequently, and they are good memories. Sort of like traveling in a little space capsule with my family. Three times a week might be a different story—I simply don’t know. But, as a child, there’s no awareness of danger on the road, of tension when dealing with other drivers, or other stresses that adults feel.

    I can remember being bored sometimes and leaning my head against the window (I still can’t read in a car, and we didn’t have movies to watch back then), watching things go by, and I’d softly sing little story-songs about life (we’re talking “and then we went to the hospital, and the people were there, then we went to the store and then we saw more,” not something deep), under the hum of the wheels on the road. The rest of the time my sisters and I made up games. Complex games with rules that made no sense. A couple of years ago, I was talking to one sister, and we were laughing with delight at the memory of two of those games—and believe me, these were ridiculously inane games. There were three of us, about two years between each of us.

    For a few years, I had to go weekly, I think, to the doctor. My dad drove me there, and it was a bit of a drive. I didn’t like going to the doctor, but I liked the time with my dad. Afterwards, we’d stop at one particular inexpensive restaurant for dinner and I’d always get the same thing. Turkey, mashed potatoes, gravy, peas, and cranberry sauce. I thought it was cool. For the whole trip, I had my father’s undivided attention, though I didn’t think about it at the time. I just knew that it made up, to a degree, for going to the doctor. It was the part I looked forward to. They always made sure there was something for me to look forward to. I had to stay at the hospital a number of times, and they’d pack a little suitcase with wrapped presents…maybe I’ve told this story to you before. The presents were things like scissors, crayons, paper dolls…just very simple things. But I wasn’t allowed to open the suitcase until they left. (Different times…so, no, usually parents weren’t allowed to stay, though when I went to Columbia-Presbyterian, I think my mother stayed with me. Maybe.) Because I had something to look forward to at the end, even something so simple, I was actually in a hurry for them to leave. This includes when I was around Rebecca’s age.

    As I said, this is clearly different from your experience, but at least it’s a child’s version of long trips, often medical, sometimes not. I’m not at all trying to diminish your concerns or saying it won’t be hard, but it’s possible her experience of it may be different from yours. I hope that, even if the travel part of this is difficult, it will turn out to be even better than you hope.

  15. Thank you for sharing! My thoughts, wishes, prayers, and support are with all of you. Peace.

  16. Hoping for the best possible outcome for Rebecca and your family. Thank you so much for sharing your experience with us. Safe travels to Pittsburgh!

  17. Know that our sincerest hopes and best wishes travel with you on these journeys.

  18. Lots of decisions with unknown valences make this a frustrating, exasperating time. Just know that you are on track, doing what you should be doing and your whole family is lucky that, in addition to having a daughter who seems to be beating the MRI image, they’ve got a dad determined and technologically sophisticated enough to find some “light” options in an otherwise very “dark” place.

    Keep in mind: while kids of this age gain variety and depth with associations of other children, still their favorite people are their mom and dad. Having you both all to herself – I don’t think she will consider a burden; probably more like great luck.

    A 20-minute drawing of every “car day” done by everyone in the car (switching off drivers of course) will not only spend time wisely but end with a meaningful and memorable collection. Special videos or books viewed/read only in the car becomes anticipated. And, even alphabet/number/geography games remind everyone that learning and education is a “forever” goal.

    I know a college professor father who, on each drive, made up a different story about “Adam and his …” (wonder-dog, wonder-cat, wonder-fish, wonder-hat, wonder-car etc). [Adam being his son’s name] It not only gave him something to occupy his thoughts in the quiet evenings making up the stories to tell, it then gave him great enjoyment in compiling his memories after the car rides were over — illustrated by Adams drawings on each car ride. I was lucky enough to be allowed to read it. It’s now a family heirloom of Adam’s wonder(full) life.

    From all that you’ve allowed us to see, and from my experience, you’re doing a good job… hang in there son!

  19. Thinking positive thoughts for Rebecca and you all.

  20. Prayers your way!

  21. Wishing all the best and hoping it helps. I loved car rides when a youngster – she may enjoy the time with you both.

  22. Eric, I’m sorry for your and your family situation. I wish the best for your daughter. You don’t know me, but, you are a great inspiration for my professional life. Stay with good thoughts and I’m praying to your family and daughter.

    Cheers and hello from Brazil.

    Diego Eis

  23. Best wishes to your family, Eric. While those car rides will be a lot of hours, perhaps they can be good ones.

  24. Dear Eric,

    My husband and I are both graphic/web designers and have been followers of your work for many years. Thank you for all you have done to teach and inspire.

    As I write this portion I have tears in my eyes, but I wanted to pass along a deeper message of gratitude from our family. In January, our then, nearly 2-year-old niece was diagnosed with cancer (neuroblastoma) and has been undergoing treatment since. She’s currently receiving her 6th round of chemo in Akron. We are all trying to be strong, but I’ve never known heartbreak as I did when I held her and rocked her while she was receiving her first round of treatment and recovering from a myriad of procedures or when my brother told me with tears in his eyes of her prognosis. Thank you for so graciously and courageously sharing your experiences and allowing us the opportunity to share our support for your family.

    We just wanted to let you know there is another family out there who is thinking of and caring for yours.

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