The New FDA Approved Drug Already Saved Jackson

11 Mar

Hands down the toughest part of Jackson’s 15 months of treatment wasn’t surgery or chemo or stem cell transplant or radiation. It was this new, promising treatment called immunotherapy.

Immunotherapy was 100% gut-wrenching torture. I do not wish it on my worst enemy. And with updated study statistics, it’s probably the reason Jackson’s still alive today.

You see, this week the FDA approved the drug Unituxin for the use in frontline treatment of high-risk Neuroblastoma. It is only the third drug that’s been FDA approved for pediatric cancer usage in over 20 years.

Don’t get me started.

Back in 2009 and 2010, Unituxin was a clinical trial drug known as CH.14.18. I signed my life away…and Jackson’s…to get this treatment. The list of side effects were pages long. He was admitted to the Pediatric Intensive Care Unit each time for 4-5 days. His blood pressure would drop, sometimes he needed oxygen. At times, he would break out into hives, one time even getting red, raised nodules on his head. His temperature would spike over 102. But the worst part, by far, was the pain.

If you’ve never had nerve pain before, the only way you can truly understand and empathize with this level of pain is to watch someone else go through it. And that person for me, was my one year old.

The kid that wouldn’t even wake up from his nap for his GMCSF shots…he knew pain. He could still run through the halls with high-dose chemo just days before his stem cell transplant. That was just a little discomfort. He’d had major surgery to remove his tumor. He knew pain. But this was different. It was searing and all encompassing and sometimes it hurt so bad, you couldn’t tell where it was coming from. My one year old, guys.

But this saved his life. And it's going to save someone else's.

But this saved his life. And it’s going to save someone else’s.

“Three years after treatment assignment, 63 percent of participants receiving the Unituxin combination were alive and free of tumor growth or recurrence, compared to 46 percent of participants treated with RA alone. In an updated analysis of survival, 73 percent of participants who received the Unituxin combination were alive compared with 58 percent of those receiving RA alone.” (Read the full FDA press release here.)

Back in 2009, they told us 30-40% chance of surviving five years.

March 29 marks the day he will be five years finished with cancer treatment. For all the people who worked really, really hard to create this drug and get it approved: thank you. For kids getting diagnosed with Neuroblastoma today, their parents are going to be told 73%.

This is not a cure, but it’s definitely a step in the right direction.

5 thoughts on “The New FDA Approved Drug Already Saved Jackson

  1. Getting teary b/c we start this treatment in the next two weeks. I’ve never been so excited and also dreading something in my life! Thanks for paving the way.

    • Your Jack is going to rock it. My Jackson was the guinea pig, they know a lot more now! If I could give you advice, it’s to have a pain plan in place first and you’ll be ready if it starts. Start Neurotin for the nerve pain like 3-4 days before it getting hospitalized. Also, Jackson had allergic reactions, so he was on round-the-clock Benadryl, but we also added in Zyrtec, which believe it or not, really helped. I emailed Dr. Yu, the study chair, on the first day of immunotherapy for that one 🙂

  2. I read your blog regularly, I look forward to it for a few reasons. I am a mom and feel the pain & joy you express in each of your postings. The other reason is that I am a nurse~ a pediatric nurse & I love to hear the other side of the health care voice. You express your thoughts & feelings in a way that I truly connect with. You advocate for your kids & give other parents, who may be new to the world of healthcare, the guidance they need to advocate for their children.
    Thank you!

    • I’m so glad to hear this. Pediatric nurses are a unique bunch, I can’t tell you how much I love them. Nurses were often my best friends when things were so acute with my kids. Thanks for reading my blog – I’m so glad you identify with it!

Leave a Reply

Your email address will not be published. Required fields are marked *