Call the Oncologist

We received regular tutorials by the Patient Educator Nurse in the hospital. She gave a tour that showed us where we could find the hospital pharmacy, unit 2800 where we would go for blood transfusions (I was thinking: WHAT?! You are talking like this is a regular thing. I'm just learning that blood transfusions are a very regular part of most chemotherapy patient's treatment), and then she proceeded to show the clinic (I skipped that part because I was there the week before). We were also given a 1 1/2 inch three ring binder that serves as a cancer manual. Inside the front cover was a laminated list with magnets attached for our fridge. It lists all the contact numbers for our doctor or the pediatric oncologist on call AND a huge list of reasons to call.

CALL THE ONCOLOGIST FOR:

* Fever of 100.4 or great (this is considered a MEDICAL EMERGENCY)
* Shaking chills (even without fever)
* Any signs of infection, low platelets, or anemia
* Any problems with the central line such as redness, swelling, or discharge
* Bleeding that cannot be stopped in 10 minutes
* No bowel movement for two days
* Distended, enlarged, hard, or painful abdomen
* Diarrhea lasting more than two days
* Any signs of dehydration
* Vomiting, especially if your child cannot drink of keep medication down
* Mouth sores or rectal sores
* Rash, blisters, or ulcers on the skin
* No urine or severe decrease in urine
* Blood in urine, dark colored urine, or pain with urination
* Exposure to chickenpox
* Headache, blurred, visison, double vision, or change in behavior
* Shortness of breath
* Any changes, any questions

Abby, our Patient Educator, told us to call for ANY of these reasons - even if it doesn't seem like a big deal. We hadn't been home 8 hours when Jacob threw up. He then proceeded to eat dinner and bounced around the house like nothing was wrong.

I had no reason to be alarmed, except that vomiting was on the list. I was more afraid of not calling. So being the weekend I had the on call pediatric oncologist paged at the hospital. He assured me it was fine and I could up the dose of Zofran if needed.

I didn't wake Jacob up to give him medicine at midnight. But when I came down the next morning to give Jacob a dose he had already lost his stomach bile and then again the water that he drank to rinse. I kind of felt like an idiot calling again. Olga reassured me that I was doing the right thing with calling.

Along came Sunday and I noticed a rash on Jacob's shoulder and on his chest by the port. It didn't itch or bother him, but it was on the list. It wasn't spreading and it wasn't the same rash he had a week ago with his fifth disease. Then I started worrying about the fifth disease and how harmful this little virus can be to kids with weakened immune systems. I didn't think it was necessary to haul Jacob off to the hospital, but again I called the oncologist on call to report.

Jon called the doctor and answered a bunch of questions about the rash. I tried to keep busy. I didn't want to worry and I didn't want to wake Jacob up to drive to the hospital so we could sit in waiting. She went to research the symptoms and then called back and I spoke with her. She spoke with me for quite some time. I felt like an idiot. I'm basically not supposed to do anything for my son without running it by the oncologist. I don't want to miss anything and everything is different when you are pumping your baby full of toxic chemicals.