Since Beau’s diagnosis in January 2019, the COG 9032 protocol has changed. Current standard-risk ALL treatment is built on similar foundations, but details vary.Please consult your child’s care team for specifics.
Many children around the world are treated for Leukemia following the Children’s Oncology Group (COG) guidelines from study COG0932. There are a couple other mainstream protocols, including the Berlin- Frankfurt-Munich (B.F.M) and the UK, but in the U.S. especially, most children follow COG0932 unless they are participating in a research study themselves.
This made choosing treatment simple. When Beau was diagnosed we immediately thought, “We need a second opinion, we must research other hospitals and how they treat ALL.” Our doctors at Children’s Hospital Colorado (CHCO) explained the COG9032 protocol and its universal nature and we realized that treatment facility was irrelevant. I suppose facility could make a larger difference in certain scenarios, but CHCO is an amazing hospital; a beautiful, well-run facility, so we were comfortable to not look any further.
Another dynamic is that pediatric cancer treatment is mandated by the state. Choosing alternative treatment can land you in a custody battle with Child Protective Services. Most people aren’t aware of this, I wasn’t until my own child was diagnosed. When Beau was diagnosed we called a trusted applied kinesiologist, with whom we had worked for many years, and got his opinion. He gave us details on what some people think causes ALL, what tests we should have run, etc. Josh asked him if we should seek an alternative path and his reply was, “Unless you are ready to move everyone to Mexico indefinitely within the next 24 hours, you have absolutely no choice but to stay there. And really, if you take Beau out of that hospital, CPS will be at your house before you get home.” Well, that settled that. It is not to say we would have chosen a different path, but it was clear quickly that there was no other path to “choose” unless we were ready for a fugitive future.
So we began treatment following the COG9032 protocol. The whole protocol is called referred to as the “roadmap” and can be broken down into a handful of different phases.
Frontline
In standard-risk B-cell ALL, frontline treatment is typically divided into five phases: Induction, Consolidation, Interim Maintenance 1 (IM1), Delayed Intensification, and Interim Maintenance 2 (IM2). Each phase follows a different treatment plan and may include varying combinations of chemotherapy, steroids, clinic visits, and, as needed, blood or platelet transfusions.
Typical frontline timelines include:
- Induction: 28 days
- Consolidation: 35 days
- Interim Maintenance 1 (IM1): 56 days
- Delayed Intensification: 56 days
- Interim Maintenance 2 (IM2): 56 days
Depending on blood counts and how a child is tolerating treatment, pauses or “holds” may occur to allow for count recovery. These holds can extend the length of a given phase.
After completing frontline treatment, children move into Maintenance. Maintenance typically lasts three years from the first day of IM1 for boys and two years for girls. This gender difference is based on historical data showing a higher risk of relapse in boys, as testicular tissue can serve as a sanctuary site for leukemia cells.
Maintenance
Maintenance includes daily and weekly oral chemotherapy (6-MP, methotrexate, respectively), and monthly clinic visits that involve a lumbar puncture, steroid pulse, and vincristine infusion. The COG is considering spacing those visits to be once quarterly, with only lab exam/count check occurring monthly.
Our Experience
Because Beaudin has been doing well clinically—and because minimizing chemotherapy exposure when safe is an important priority for our family—our oncologist was comfortable starting Beaudin on the quarterly lumbar puncture, steroid pulse, and vincristine infusion cadence.
The COG is not quick to change any portion of the protocol, so it is a very slow process. Our doctor at CHCO said that she was okay with Beaudin doing the 12-week maintenance schedule both because he has been doing so well, but also because she knows that our priority as a family is the least chemo possible. With the COG in the process of changing their official stance, Beaudin doing as well as he has, and our preferences as a family- she is ok with that path for us. **
A quick pause to express the gratitude I have for her allowing this decision. Many parents I’ve spoke with do not have doctors that are receptive to collaborative decision making. Our lead doctor is always willing to listen to our purposes, concerns, and circumstances and discuss, at length, how to create a road map that is honoring to our goals as a family.
Treatment then and now
The Children’s Oncology Group (COG) is widely considered the gold standard for pediatric cancer treatment in the United States. At the same time, pediatric cancer research receives only a small fraction of overall federal cancer funding (4%. FOUR!) That reality shapes how quickly (slowly) protocols evolve and how cautiously changes are made—especially in a field where parents are understandably reluctant to see their child become the test case for something new when existing treatment works well enough.
Fifty years ago, leukemia was often a death sentence. That history still lives close to the surface, which is why older generations tended to react with particular fear when we shared Beau’s diagnosis. Over the last several decades, survival rates have risen from the low single digits to the mid-90% range. That progress is remarkable—and still not where I want it to be.
For those not watching a child’s body be reshaped by chemotherapy, it can be hard to understand why this remains such a deeply personal soapbox. “If your child has a 96% survival rate, consider yourself lucky.”
Yes. And then you begin to reckon with the long-term cost of survival:
- Treatment causes permanent hearing loss in a significant portion of pediatric cancer patients
- Roughly one-third of survivors develop a second cancer by mid-adulthood
- The majority of survivors experience at least one serious, disabling, or life-threatening health condition later in life
Survival matters. So does what comes after.
For the future
“In the future, standard combination chemotherapy protocols might be tailored to an individual’s unique genetic profile; this approach, together with novel molecular agents directed at leukemia specific mutations, would continue with the current goals of minimizing treatment toxicity for patients at low risk of relapse.”***
(https://www.bmj.com/bmj/section-pdf/186255?path=/bmj/338/7709/Clinical_Review.full.pdf)
Editor’s note:
*During Beaudin’s treatment, boys had maintenance longer than girls. More recent COG studies describe a total treatment length of about two years from the start of IM1, without a difference based on gender. Your child’s oncology team can explain what applies to your child’s specific treatment plan.
**Beaudin later relapsed. Treatment decisions described here were made carefully with his oncology team based on the information available at the time.
***Beaudin later participated in trials with “novel molecular agents directed at leukemia specific mutations,” aka CAR T-cell therapy which feels like a wild foresight and something I can’t think too hard about.
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