How We Decided a Phase 1 Clinical Trial Was Right for Our Kid

by Kate Bernstein
October 1, 2015

The decision to enroll a child with cancer in a clinical trial isn’t one that’s made lightly. But it’s something that many cancer parents, when faced with limited treatment options for their child, wrestle with. Kate, mom to 4-year-old Micah, shares how she and her husband decided Micah would take part in this critical arm of childhood cancer research.

Micah plays in a bubble bath

Micah is no longer on the clinical trial, but you can read all about it — and how St. Baldrick’s volunteers helped make it possible — here.

Three years ago my husband and I became cancer parents.

We had been busy, happy parents of a pre-schooler and an active, just-learning-to-walk toddler. And then our 15-month-old went to the hospital for overnight IV antibiotics to treat pneumonia and left with a neuroblastoma diagnosis.

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Time to Move On: An Update on Micah and the Unituxin Trial

by Jeff Bernstein
September 10, 2015

Micah’s mom and dad know that when you’re the parents of a child who’s being treated for cancer, anything can happen. Yesterday was no different. Honored Kid Micah was at Children’s Hospital Los Angeles on a St. Baldrick’s-funded clinical trial when doctors found that enzyme levels in his liver were out of whack. (Read the blog about Micah’s participation in the trial here.) According to protocol, Micah could not continue on the study. His dad, Jeff, explains.

Micah swallows his pills

Micah takes his pills at CHLA during the trial.

We hoped it wouldn’t come quite this early, but it’s time for Micah to move on to another treatment regimen. His liver did great after day one of this cycle, but it went from zero to crazy after day two. This is Micah’s third strike, and it means he has to come off of this study.

This is apparently a rare reaction, only occurring in a very small percentage of patients receiving this antibody, and it seems Micah happens to be in that small group. At this point, even the doctors and researchers don’t quite understand the mechanism that causes it, or why it only happened sometimes in Micah’s case.

Before I go further, I should note that Micah is acting and feeling fine. His liver isn’t enlarged or causing him any pain. He’s just as active and energetic as he is on any other day. If the past incidents are any guide, Micah’s liver enzymes will come back down into normal range within the next few days. We’ll be rechecking them on Friday, the same time when we’ll regroup with Micah’s CHLA team to discuss next steps.

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Childhood Cancer

Micah and the Unituxin Trial

by Erinn Jessop, St. Baldrick's Foundation
September 9, 2015

Micah dances alongside hospital monitors

Micah dances to his favorite song, “Let It Go,” in his hospital room at CHLA. A nurse helped him with some choreography and whenever Micah has visitors he puts on a show.

Micah is literally dancing through treatment.

Careful of the lines attached to an IV in his wrist and to a port in his chest, the 4-year-old will raise his hands and twist his hips in his room at Children’s Hospital Los Angeles (CHLA), where he’s participating in a clinical trial partly funded by St. Baldrick’s.

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BREAKING NEWS: FDA Approves Childhood Cancer Drug

by St. Baldrick's Foundation
March 11, 2015

We’ve got some spectacular news. Really, really big news.

The FDA Has Approved a New Childhood Cancer Treatment

In the last 20 years, only two new drugs have been approved that were specifically developed to treat children with cancer.

Yesterday, that changed. Now there are three.

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Kids with Cancer

Childhood Cancer Life: Our Day With Micah [PHOTO ESSAY]

by Alison Sutton, St. Baldrick's Foundation
March 6, 2015

Two lucky St. Baldrick’s staffers got to spend a day with St. Baldrick’s Honored Kid Micah, who’s currently taking part in a St. Baldrick’s-funded clinical trial at Children’s Hospital of Los Angeles (CHLA) for neuroblastoma, a type of childhood cancer. Here’s a glimpse into a day in the life of Micah, as seen through Alison and Kristen’s eyes.

Micah is in treatment for neuroblastoma, a type of childhood cancer

Photos by Kristen Lynette Photography.

Asking a 4-year-old to sit still for 10 to 20 minutes can seem like an impossible request. Telling that same 4-year-old to sit in a bed for 10 to 20 hours is just crazy talk.

This crazy talk is something Honored Kid Micah had to do four days this week. Why? Because of childhood cancer.

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Why Kids Like Micah Need You

by Jeff Bernstein
September 30, 2014

September is Childhood Cancer Awareness Month, but kids like Micah need your help year-round. Get involved.

Micah holding a stuffed penguin

Three-year-old Micah is fighting neuroblastoma for the third time.

It doesn’t really feel like it’s been a year since Childhood Cancer Awareness Month 2013. A year ago my family was working through how best to fight a neuroblastoma relapse that had taken us by surprise in late August after our son Micah had been in remission for a mere three months.

Then I think back on everything he’s been through during the past 12 months.

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My Reality as a Father of a Child with Neuroblastoma

by Jeff Bernstein
June 11, 2014

Jeff’s younger son, 3-year-old Micah, is fighting childhood cancer for the third time. There is no known cure for Micah’s cancer, so Jeff is raising money for children’s cancer research with the hope of finding one. Donate on his page.

Jeff Bernstein and his son Micah

Jeff and Micah after Jeff shaved his head for St. Baldrick’s.

Sometimes I still find it strange that I’ve been a dad for nearly seven years. As I’m sure all parents realize, time flies by all too quickly.

There are, of course, the occasional moments during which it’s just the opposite, where time seems to stand still: a first step, questions that are insightful or hilarious (or both), the first day of school, a first time riding a bike with no training wheels.

Or when a doctor tells you that your child has a tumor.

That kind of moment not only stops time, but also forever changes your life. It’s not the kind of moment any of us expect when we become parents. But it’s a moment that my wife and I will forever share.

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