Dr. Guest’s Bandage Story
Everything You’d Want to Ask A Pediatric Oncologist
By Annie Noll
Dr. Erin Guest, pediatric oncologist specializing in cancer genetics and infant Leukemia at Children’s Mercy Hospital, has the hardest job in the world. Well, that’s what I thought.
As we sit together in a bustling Starbucks, she says, “To me there are other areas of pediatrics that would be much harder. In the ER, you see children who were perfectly healthy taken away from their families instantly. With a cancer diagnoses, the family has time to start coping. Most of our patients get better, even if temporarily.”
I agree, as I think back on my family’s experience. Through treatment, our son Jonah got better, even though it was ultimately temporary. After his sudden diagnosis of Stage Four High Risk Neuroblastoma at age three, our family was able to adjust our sails, fight for what we loved most, and then do what we always thought unimaginable, accept the inevitable. After two and half years, Jonah passed on April 5, 2017 at 5 years old.
Dr. Guest is one of Noah’s Bandage Project’s grant recipients and was actually Noah Wilson’s doctor (Note: this article mentions both Noah and my son Jonah). And, although Jonah had a different oncologist, we knew Dr. Guest’s warm presence from our stays on the Children’s Mercy Hospital cancer floor. Together we inhabited the same battle field, but in different roles; me, terrified but courageous mother; her, one of the steadfast soldiers saving the day. I always wondered, what is this experience like for them?
Dr. Guest is on the right with her hands on Noah.
Now, in my post pediatric cancer, post battle life, on a normal fall Saturday, I revel in the consequence-free opportunity to see the world I was in more objectively, without the stats and facts raising my emotional stakes, and without the desperate hope for Jonah. I want to understand what kind of person is able to go from hospital-room to hospital-room helping families who are experiencing their worst nightmare, where God fits in, what parents can do for early detection, and what needs to happen to find a cure childhood cancer. Her answers reminded me that we need people capable of imagining the unimaginable.
Do you like your job?
I find purpose in educating families and transitioning them into fight mode. Also, we get to develop close relationships with them and often follow a patient from when they are babies or young children until they are 21. I love spending time with our kids when they are well. Most of our days are spent seeing they are happy and playing.
When I share what I do, people will say, ‘oh my gosh, that is so hard’, but I find this job really interesting. Every kid is unique, every diagnosis is unique, every story is unique. Even if two kids have the same the same diagnosis, their genetics are different; one may have a mutation that is easier to treat, and the other may have one that is typically harder to treat, but that’s not necessarily how it turns out.
How and why did you choose pediatric oncology?
My mom was a pediatric nurse, so she exposed me to this world. I went to school with the intent of being a pediatrician, but during my fourth year of medical school at the University of Oklahoma, the general pediatrics internship was full, so I choose hematology/oncology instead. During my first year, we were helping a little boy with a kidney tumor. For this one child, there was a multidisciplinary team of surgeons, oncologists, and other specialists. I was sold on the collaborative team effort.
What keeps you up at night?
Most often its wondering if I’ve done enough for a patient and wondering what else we could if someone is having a hard time.
Do you believe in God?
I do. I have had families say, I’ve always had strong faith, but now I doubt it. I never bring up my faith unless asked. But I do think prayer and faith is really important for the treatment process. It helps with mental health and well-being. Where it gets tough though, is sometimes the biology is what it is. Prayer and faith help me with coping and feeling like there is a bigger purpose to each family’s journey.
Do you have those the moments when it feels like God is in the room?
When I see the family accept what’s happening and begin to rally. That’s the most spiritual moment to me.
What is it like to tell parents their child has cancer?
When we give bad news to a family, I always begin putting myself in their shoes, but I have to turn it off, I need to be able to get them to the next step. But there are some kids that we spend so much time with, and we think things are going well, and then they aren’t, and that’s when it gets really hard for us. We know there is always the potential it could turn around, so I use medicine, science, information gathering, and solution seeking as a way to cope.
How do you deal with the death of a patient?
Being open amongst colleagues helps. After a death, we will spend time together talking about what happened. In this situation, I will always wonder if there was something we could have done different. It helps to talk it out with mentors. Usually when a patient is going to die, we know it’s coming and we can cope over time, but that doesn’t happen if its sudden. Noah’s death was sudden. He got sick and died within days. That was a situation where I wanted to do more, but it was clear there wasn’t anything we could do beyond comfort. That was hard to accept.
Are there early signs of cancer that parents typically miss?
The first thing I always tell families when we meet them is, don’t worry you that missed anything, don’t worry you caused this, there’s nothing you could have done to prevent it either. Every parent we meet thinks some form of, I should have brought my child in a month ago when I noticed the bruise. Kids get bruises, and aches and pains, and have fevers. Early detection is not a reasonable expectation for childhood cancers like it is for in adult on-set cancers. Now with that said, we follow families with known genetic mutations and we do whatever screening is appropriate, but even then, we only screen for the cancer or cancers they are most susceptible to. What I want parents to know is that we see that most are on it when their kid starts having symptoms, and my advice is that if you feel there is something off, keep pursuing for more answers. And that’s exactly what we see parents doing.
What do we need to do to cure childhood cancer?
People talk about curing cancer, but they don’t realize how broad cancer is. Every cancer is different in every patient even if they have the same disease. Tumors also change with time and develop different mutations. So, treatment needs to be individualized for each disease and then further for each patient’s make-up. That’s what we’re aiming for- personalized, precision medicine.
Does a family have to go to the most well-known institutions to get the latest treatment?
Essentially, every major children’s hospital in the U.S. is part of the Children’s Oncology Group (COG). That means that no matter where you go, you are getting the same protocol you would get anywhere else, and if one hospital has a study open that we don’t or vice versa, or has special equipment we don’t have or vice versa, we send you were you need to go. We all share data, we all share information.
Have you ever had a family refuse treatment?
No, but I have had a family leave and go to a different hospital, where they likely ended up hearing the same thing we told them. That’s perfectly ok. I always encourage families to get second opinions, especially in unusual cases. It’s very important that parents feel comfortable with the medical team and plans of care.
What is the future of pediatric cancer treatment?
We need better diagnostics and more targeted treatments. One area that I think is really exciting is “liquid biopsy.” It’s about detecting any form of cancer via a blood draw. Theoretically, you could take a patient with neuroblastoma, sample their blood and detect the status of the cancer without having to put children through invasive scans. Every parent of a child with cancer knows how rough scans are on the child and therefore the family. The child is often under anesthesia, has spent the whole day being poked and prodded, and their spirits get down over time. Noah was actually a part of a leading study that’s doing this for his type of cancer, Ewing Sarcoma.
What causes kids cancer?
It’s a mixture of genetics and environment like any disease. But, unlike adult cancers, which are more environmental (exposure over time), childhood cancer is heavier genetics. Not necessarily that I mean its inherited, but more that something goes wrong at some point in the DNA of the cell that the body doesn’t repair and the immune system doesn’t catch. At this point, we don’t have convincing evidence that childhood cancers are caused by environmental factors alone. COG has a database where they keep tabs on what cancers are occurring, what ages, what towns, etc to make sure there aren’t clusters. Currently, we see that it’s random. Also, we haven’t found any links to anything the mother did during pregnancy to cause it. It’s random as far as we can tell, which isn’t satisfying. I’ve had families tell me, our daughter got leukemia and the people that lived in our house before us, their daughter also had leukemia. But 1 in every 400 kids gets cancer, coincidences are going to happen.
Haven’t more kids been diagnosed with cancer in recent years?
The absolute numbers have gone up, but that’s because the population has too. Our numbers at Children’s Mercy haven’t changed in the past few years. We usually see about 160-180 new cancer cases every year.
Why does the government only give 4% of its National Cancer Institute budget to pediatric cancer?
Well, they see it as rare and COG funding is dependent upon the National Cancer Institute’s budget. When people start talking about cutting taxes, I’m not sure they always make the connection that programs like the Children’s Oncology Group lose funding. It’s becoming harder and harder for researchers to get grants from the government, and many researchers rely solely on grant money, so if they don’t have it, they don’t work, or they have to find another source. And, that’s where foundations like NBP come in to help pick up the slack, but we can always use more NCI/NIH funding.
Tell me about the new Children’s Research Institute at Children’s Mercy Hospital.
This is a huge new tower that will have lab benches for world class researchers. Our genome center will move in there, our clinical pharmacology group will move in there… It will bring everyone together into one space and be for all types of pediatric research not only cancer.
What are you researching right now with the grant money from Noah’s Bandage Project?
That grant is helping us with infant leukemia genomics research. One question we have is, why do children less than age 1 with leukemia have worse outcomes? Why is that form of cancer more resistant? Hopefully we can design more targeted treatment based on what we learn.
Have you ever had a moment where you realized, this is what I’m meant to do?
I don’t know if it was any one moment in particular. Although my dad did say recently, I think you found your calling. I wouldn’t want to do anything else. It sounds strange to say I love my job when we deal with such sad things, but no matter what the outcome, I’m honored to get our families through the process. There are sad days, but overall, it’s not a sad job, it’s a happy job.