Meet Caramon’s Cancer Notebook!
Managing the health needs of your family can seem daunting. Insurance paperwork, shot records, knowing when yearly physicals are due… it is a chore, and one often left to Mom.
Now try adding in the thing no one wants to talk about. The Big-C.
Suddenly you wake up in a scary world where you don’t have one doctor, you have an entire team of doctors. The hospital visits and doctor appointments mash together into a blur of disinfectant, IV machine beeps, and sleeplessness.
So how do you get through it? Especially when it is your child?
Caramon was 4 when we received the diagnosis of cancer. It was the scariest thing I ever went through, and I nearly lost him and his brother during my two terrible pregnancies.
At the time we lived only 20 minutes from a fantastic pediatric hospital, a place I grew to think of as our second home. The staff? Over the top phenomenal from the janitor to the woman at the information desk to the nurses to the doctors. There were no bad experiences at Children’s of Columbus, Ohio. Saying a lot since it was the Big-C after all.
The staff of the pediatric oncology department came to us with a binder they created during the days leading up to diagnosis. I nearly cried. A gift to each family, the notebooks helped make life less scary for us parents. It was one of the first acts of kindness during one of the hardest a trial a parent could face.
Inside the notebook was enough paperwork to kill a grove of trees! You name it, it was in here. Neatly organized with dividers!
A nurse came with Caramon’s first chemo treatment and then she walked me through all 22 sections while sitting in the Pediatric ICU.
They prepared and included many charts in the notebook. By tracking things, it allowed for some sense of control during a very chaotic time. I learned what to expect and could plan accordingly.
The chemo section contained paperwork on each of the three chemotherapy drugs that they used to treat Caramon’s cancer. This chart shows a place for a date, the chemo given, to list side effects Caramon experienced, what anti-emetics he took (read drugs so he wouldn’t puke, etc), and comments.
For example, I quickly learned that Zofran was my best friend. That drug is a God-send.
For the record, Caramon received chemo on his brother’s 3rd birthday. Poor kids. And again two days before his own fifth birthday. That was a particularly crummy year. “Happy Birthday, here’s your Zofran!”
Next up came blood counts. Your world revolves around blood counts. This tells you how well a patient can battle disease. So you need to know your White Blood Cell count (WBC) and your ANC (has to do with certain white blood cells). The drugs could also affect other parts of your blood you needed to track. Caramon ended up needing hemoglobin several times.
**For the record, a normal person’s White Blood Cell count should be between 4,000 and 10,000. When ANC is concerned, we wanted Caramon to be above 500 in order to have a good chance of fighting infection. The doctors considered Caramon’s chemotherapy “light”, so he was OK in these regards. **
The Daily Medicine Log let us track what antibiotics, blood pressure meds, and etc Caramon needed to take. Take a look at those times. This was Lady Ozma playing nurse, not being in the hospital. I’m not kidding when I said I didn’t sleep.
Very few medications were pills. Most involved mixing drugs at my dining room table each day and then infusing over 15 -60 minutes. You can see why the charting is important. I also received a chart for RX and supply reports, but I tended to just hole-punch the invoice sheets in. Only the first few things did I need to go out and purchase, everything else came via special delivery.
This chart seemed a bit repetitive, but I liked the extra detailing it allowed. For example, one of the drugs tends to constipate a person. Yes, I had to track that. Fun for me, right? I did make sure to chart things like “Threw up 5 hours after chemo” again. I also recorded the drug that turned all fluids orange.
This just served as a good way to track tests, chemo, surgeries, and etc. This is your life. If you weren’t good with calendars before, that would change.
X-rays, CAT Scans, MRI’s, EKG’s, you name it. It was nice to have a place to chart results. I had a pre-rad page and a post-rad page. Just seemed like the thing to do at the time.
The hospital becomes the home away from home. Here you can see when our life changed. You name it, it was on here. See the whole page below:
Some things I used a lot. We ended up practically living at the hospital from August until Thanksgiving, so I didn’t really use the hospital visits page. Bad Mommy.
The notebook became a vital resource in my life. Thank you to the great staff of Children’s Hospital for providing it.
I hope you never have need of something like this, but if you do… maybe this helps. I actually think some of these ideas would be great for tracking your family’s allergies, shots, statistics, injuries, and so forth!
P.S. April marks 9 years cancer-free! Huzzah!