Monday, February 20, 2012

Groundhog Day

February 20, 2012

We live in 3 week cycles. One week of chemo, then 2 weeks "off". One of those weeks off (or part of it) is usually spent back in the hospital with a fever and the other part coming and going getting transfusions.

With each passing week, we are able to check off another week on this long 53 week treatment protocol called a roadmap. However, with every delay, it's like repeating a week in time. For instance, last week started as week 30, but we were delayed due to counts not being quite ready yet. So here we go again giving week 30 another shot.

This is round 10 of chemo and consists of 3 days of inpatient chemo followed by 2 more days at home. There are 3 different chemotherapy drugs given this round. One runs over an hour every day for 3 days, but requires prehydration before it can start. The other 2 are quick injections (IV push) and one is given every day for 5 days and the other is given on days 1 and 5.

Drew is doing really well. He woke up this morning and came into my room and said, "Mom, I grew." I looked at his clothes and his sleeves were too short and his pants were floods. They measured him today and he did grow! His weight is also almost back up to where we started.

Tuesday, February 7, 2012

Back to the Fever Routine

Tuesday, February 7, 2012

We spent all day last Friday at the Day Hospital getting platelets and a blood transfusion. Brooke didn't have school, so she decided to come with. They had fun painting and playing games.

Saturday morning around 6am, Drew got a fever so off we went to the ER. By the time we got things packed up and arranged for the kids at home, we made it to the hospital at 11am. We spent the next 8 hours doing the usual ER routine and waiting for a bed upstairs to be admitted because he was neutropenic (0 neutrophils - the specific infection fighting white blood cells). The usual ER routine includes: drawing labs to check his counts (we knew his hemoglobin and platelets would be ok b/c he just received those the day before, but we also knew that his white count was bottoming out being 10 days post chemo), drawing blood for cultures to make sure he doesn't have an infection in his blood, starting IV fluids to help replace fluid lost due to having a fever, starting IV antibiotics and checking blood pressures every 5-15 minutes for an hour b/c if he did have an infection, starting the antibiotics could cause his blood pressure to drop in which case they would send him to the PICU.

We were able to get him some Tylenol around 5pm which helped with his fever and made him much more comfortable. We finally got a room at 7pm and got settled for the night.

Since he had a runny nose and a lingering cough from the last couple of weeks, we were put in isolation, which means a room to ourselves!

After the nasal swab to test for RSV and Flu (both came back negative), which made for one upset boy and resulted in a nice puking session, it was a pretty uneventful stay. He never spiked another fever after that first dose of Tylenol in the ER. So after 48 hours being fever free and negative blood cultures, we loaded up on another unit of platelets and were sent home yesterday afternoon. We are all very happy to be home and next round is scheduled to start a week from tomorrow.

The flash kept getting him in this picture and he couldn’t keep his eyes open, but he wanted a picture of his new squinkies that kept him very entertained this trip.

This is how play goes around our house these days. Brooke is giving her doll a blood transfusion!