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 (CHOC) explained the COG9032 protocol and its universal nature and we realized that where we went was a bit irrelevant. I suppose facility could make a big difference in certain scenarios, but CHOC 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, or actually even pursuing choosing alternative treatment will 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, but you have very little choice in your child’s cancer treatment. 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 in 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. I am not sure we would have chosen a different path, but it was crystal clear 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 your “roadmap” and can be broken down into a handful of different phases.
In standard- risk B cell ALL treatment there are five different phases during Frontline Treatment: Induction, Consolidation, Interim Maintenance 1 (IM1) , Delayed Intensification, Interim Maintenance 2 (IM2). Each phase includes a different treatment plan, various chemos, steroids, and clinic visits and blood transfusions. The timeline for each phase is:
Induction- 28 days
Consolidation- 35 days
Interim Maintenance 1 (IM1)- 56 days
Delayed Intensification- 56 days
Interim Maintenance 2 (IM2)- 56 days
Depending on your blood counts, you may have a “HOLD” from treatment to allow more recovery time which could delay any given phase. After Frontline Treatment you enter Maintenance. Maintenance is 3 years from the first day of IM1 for boys, two years for girls. This is because the testicles allow for a higher relapse rate in boys.
Boys having a longer treatment plan than girls is also something that is debate and disputed by various groups around the world. I’ve heard from conversation that this may be changed at some point. Right now boys have an extra year of treatment because the testicles can hide hold-out cancer cells, allowing for a higher relapse rate in boys.
Maintenance includes daily oral chemo of 6mp, weekly oral chemo of methotrexate, and every 4 week Lumbar punctures, steroid pulses, and Vincristine chemo administrations. This portion of COG9032 is rumored to be changing soon from 4 week appointments to 12 week appointments which is amazing because it cuts that portion of chemo and procedures by 2/3. But as you can imagine, the COG is not quick to change any portion of the protocol so it is a very slow process. Our doctor at CHOC said that she was okay with Beaudin to begin Maintenance on the 12-week 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.
The COG is the “gold standard” in cancer treatment in the western model. The problem, however, remains that pediatric cancer receives a measly 4% of cancer funding from the federal government. Another factor that makes the strides in pediatric cancer less likely is that few parents are signing up their child to be the test case for a new protocol. And even if there were parents willing to take that risk, CPS won’t allow for it.
50 years ago, Leukemia was a death sentence. Period. This is why when we told people about Beau’s diagnosis, those who were above 50 years old were far more concerned on the whole. In the last 50 years, the survival rate has gone from in the single digits, to upwards of 94-96%. But do you know what happens when the survival rate gets as high as 96%? There is less frenetic energy to search for a cure. There is less intensity to research the cancer. There are MANY doctors out there committing their life’s works to Pediatric Leukemia, so let me say clearly, THANK YOU to them. My point is not to say that people are not working on this, my point is to say that with a 96% cure rate, there are not as many doctors who think, “Well, let’s try a bit less chemo in this area or that and see if the survival rate holds.” And beyond doctors, there are few parents who say, “Well, with path A, I can ensure a 96% survival rate, but let’s try a new path and see what happens.” Truth is, everyone wants to keep their babies. And as such, understanding how to keep the survival rate high, but lower the necessary chemotherapy load is a slow road.
And people who are not watching their children’s bodies be ravaged by chemotherapy wonder why it’s such a soapbox. “If your child has a 96% survival rate, consider yourself lucky.” Yes, and then you consider the long term ramifications of chemotherapy on a young body:
-treatment causes permanent hearing loss in 37% of children with cancer.
-roughly one-third of survivors developed a second cancer by age 50.
– 80% of pediatric cancer patients have at least one serious, disabling, or life-threatening health condition by age 45.
(This is a really great article on the new ways scientists are studying the long term effective of chemotherapy on pediatric patients. https://www.sciencemag.org/news/2019/03/treatments-childhood-cancer-can-devastate-lives-years-later-scientists-are-trying )
And again, a blaring 96% survival rate has people on the outside more comfortable with the treatment as it stands. But what if I told you that 80% of children with A.L.L. do not have cancer at all after Frontline Treatment, but because 20% of children relapse, the other 80% will continue on for 3 years with chemotherapy. Children WITHOUT CANCER continue receiving chemotherapy because of a 20% chance of relapse. Chemotherapy that can cause devastating side effects is administered to children who do not have cancer.
How you should feel about this all is clear as mud.
My prayer is that the next frontier in ALL cancer treatment would include understanding better the relapse rate. So that 3, 542 cancer free (80% of the number of 2018 pediatric ALL diagnosis), healthy children, will not continue receiving chemotherapy because we do not have the science to identify them from the 877 (20% of the number of 2018 pediatric ALL diagnosis) who will relapse. Better said, “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)
If you ever find something in my writing to be inaccurate when it comes to ALL, I would love to know about it. Science is always changing, as I explain in this post, and I would never want my words to lead another parent to an incorrect assumption. xx