Tags
cancer, caramon, diy, healthcare, lady ozma, notebook, organization, pediatric cancer, wilms' tumor
The first chart helped us chart the chemo schedule.
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!”
A Blood Count chart came next.
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 Long
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.
My Child’s Health Diary
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.
Lady Ozma's Journey 
::fireworks and applause:: YAY for 9 years cancer-free!!!
As a mom, I have absolute admiration for you, having had to go through this with a child. I can be very good with medical things, but the Big C and my kid? Fall apart time. At some point.
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I’m so happy that we reached this point! But it’s still kind of scary not knowing what the future may hold. 😦 Especially when you read all the studies about how these kids end up with other cancers and health issues because of the chemo/rad and the statistics of how little funding pediatric cancer gets.
It was hard. But you manage to get through it…mostly because it is your kid and you have to rally for them. Sometimes in private you break down, but you are really too tired. If you get a private moment you pass out.
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