Today I’m teaching you all about leukemia and what you can do to support a new cancer diagnosis of Acute Lymphoblastic Leukemia (ALL - both T-Cell and B-Cell) and Acute Myeloid Leukemia (AML).
I used to work with the oncology patients day in and day out and became very well versed in this but it’s definitely not an easy subject to tackle if you haven’t worked with the oncology population yet. Just a few facts to get us started:
“Leukemia is the most common cancer in children and teens, accounting for almost 1 out of 3 cancers.
About 3 out of 4 leukemias among children and teens are acute lymphocytic leukemia (ALL). Most of the remaining cases are acute myelogenous leukemia (AML).
ALL is most common in early childhood, peaking between 2 and 4 years of age. Cases of AML are more spread out across the childhood years, but this type of leukemia is slightly more common during the first 2 years of life and during the teenage years.
ALL is slightly more common among Hispanic and white children than among African-American and Asian-American children, and it is more common in boys than in girls. AML occurs about equally among boys and girls of all races.”
All directly cited from https://www.cancer.org/cancer/leukemia-in-children/about/key-statistics.html.
So, with that being said, I unfortunately saw A LOT of patients with leukemia at the previous hospital I worked at. Let’s dive right into how I introduce and teach a new ALL or AML patient about their diagnosis.
First I introduce who I am to the family and go in with the mindset that I’m just getting a feel for what the patient knows. Typically I saw a lot of parents who didn’t want to tell their children they have cancer. My job was to reframe how we told them and explain that what we as adults know about cancer isn’t always what kids know. I always spoke to parents separately following my initial meet and greet to explain how I usually tell them about cancer and what the normal reaction is from kids. Usually this is where I find out, as well, if the patient had any previous knowledge of cancers i.e if a dog/grandpa/Aunt/etc died of cancer and what kind of cancer they had. Then I use that when I’m teaching to address any fears they rightfully have. I assemble everything I need for teaching which includes:
- White blood cells (marshmallows or white rice)
- Platelets (lemon heads or banana candy)
- Red blood cells (red skittles or red hots)
- Leukemia cells “sick cells” (dark candy, always different than the other candy, like purple gobstoppers or something similar)
- Plasma (karo syrup or water)
- Containers that seal (urine sample cups)
- Cheat sheet with explanation of cells jobs (I used this my first 2-3x until I perfected my speech)
When I introduce this activity it’s usually about 2 days after admission when we get final pathology back with their diagnosis. I do this because it’s happened a few times where it looks like one type of leukemia and ends up being another. Courses of treatment change with the difference in diagnosis so I want to make sure I can answer questions appropriately based on the patients’ diagnosis. I tell them I have a fun activity where we get to play with AND eat candy and usually that’s all I need to get in the door. I always make sure to do it on a day they can eat too because if you do it on a day they have a procedure and can’t eat it’s not nearly as fun.
Once I have my “in”, I go in with all my supplies in baggies and labeled with the name of the cell. I have 2 urine cups that have “sick blood” and “healthy blood” written on them. I add karo syrup ahead of time to be the plasma or if I’m short of syrup I’ll use water and fill up the cups in the patients room. I tell them we’re making blood today and we have 2 kinds to make “sick blood” and “healthy blood”. I give an option at this point to see which one they’d like to make first (choices are everything in the hospital and this is where we can give them a lot of choices!) Its pretty common for them to choose healthy blood first. I pull out my 3 bags — red blood cells (red hots or red skittles), white blood cells (marshmallows) and platelets (banana candy, lemon heads or yellow skittles). I ask which they want to learn about first. I tell them plasma is what helps blood cells move through our body and I show them the cup with “plasma” in it. Then I have them add each cell and explain it’s job:
Red blood cells — these are your energy cells! Their job is to give you all your energy to run and jump and play. Add them to your cup of water.
2. Platelets — these are your bandaid cells!
Their job is to go to any cuts or scratches and heal them.
3. White blood cells — these are your super hero cells! If you’re sick their job is to fight off any bacteria or viruses and make you healthy again.
Once we’re done with healthy blood we do the same thing with sick blood but we add one more cell the leukemia cell (dark candy like purple gobstoppers to change the color of the water or kero syrup):
Leukemia/cancer/sick cells — these are what we found in your blood that doesn’t belong there. Our job is to use medicine called chemotherapy or chemo to fight off the sick cells for you.
You can have them add a few drops of red dye if they really want their blood red too. I also try to use this time to quiz them on what red blood cells, white blood cells and platelets are depending on their age. I was anxious my first few teachings so I brought my cheat sheet with me with all the explanations above. I’d rather be right and read from my sheet than give incorrect information. I was never questioned by a parent in my ability to teach an don’t be afraid to bring your cheat sheet!
I ask them again why they’re in the hospital and usually at this point they say they have leukemia or their blood is sick. If they still aren’t sure I tell them “when the doctors tested the blood they got when you first came to the hospital they found out you had sick cells in your blood”. Depending on if their parents agree they want them to know they have leukemia and more specifically, cancer, I will elaborate. I say the sick cells we found are leukemia cells. I will then ask if they know what leukemia is (I mostly do this to show parents they don’t know what it is and don’t have the same fears we do) and then tell them leukemia is a type of cancer. At this point I have a pretty clear understanding of whether they have any preconception of what cancer is. I ask them if they know what cancer is and if they don’t know I’ll say “it’s something people can get and we don’t know why but it’s not like a cold and no one gave it to you and you can’t give it to anyone else but our job at the hospital is to make sure we get rid of those sick, cancer cells and make you better”.
I will take this time to either address hair loss if it feels right or I hold off until there’s a more appropriate time. Some kids (especially if they’re older) ask if the chemo will make their hair fall out. Not all chemo does and I usually explain that but I tell them the ones we need to use first usually make people’s hair fall out. I tell them the good news is after we’re done giving those types of chemo their hair will come back. I explain sometimes kids like to wait and see when it will start falling out and some kids like to just shave it all off. The other fun thing some kids like to do is cut it or dye it anyway they’d like before since it’s going to fall out anyways. You can try a new hair cut or color you may never be able to again! Sometimes that softens the blow. We also would offer to throw a farewell to hair party. It really depended on the situation if I’d offer that. If they were primarily outpatient or just really struggling with it I usually would tell them they could do it with their family at home. If I knew they’d be inpatient and could use extra support I would offer to throw a party. This can be something small with friends/family, music and some sort of favorite sweet treat and maybe a banner with staff signatures that says “you’re so brave/strong”.
Then I make my exit and some hospitals can offer “Ella” dolls that are Barbie dolls with no hair/wigs/hats. Also there’s an American girl doll who also has no hair that can be ordered. Depends on your hospital budget. You can also use a donated Barbie doll to have the patient cut the dolls hair first. Another therapeutic option if you don’t have the above resources.
Leukemia is far too common and one of the diseases I wish I wasn’t as familiar with. I am a plethora of knowledge from the child life standpoint though so if you have questions please reach out! I’m very passionate about childhood cancer and would love to help if you’re a new oncology child life specialist or even one that has been in the field but wants to collaborate or gain insight on a certain onc diagnosis. Also, any well seasoned specialists out there that wish to add their thoughts/suggestions please comment to share with me and other specialists out there!
Until next time!
Samantha Brown