Farewell Cytoxan

This is WEEK 10 on our treatment protocol. It's the LAST time that Jacob is scheduled to receive Cytoxan (the drug we hate most). Since we are crazy and since I don't tolerate change well we decided to do this treatment outpatient (instead of scheduled overnight at the hospital) at the clinic during the week that Jon is out of town on business. Yes I had plenty of pending anxiety, but we also were pleased that Jacob responded better last round and the biggest problems were efficiently getting admitted into the hospital and getting paperwork done to be released from the hospital.

So we arrived at the clinic just after 8 a.m., checked in, lathered the numbing cream, and waited for a bit. They have a new policy to meet fire code. They no longer take the patients and families to wait in the narrow corridor. They leave you out front at the trail head to wait (it really is a larger area with more chairs that was hardly being used). The only ones that stay in the back are going to access the port or going into the infusion room. That was us. We were there for "long chemo." He meets hydration requirements before cytoxan and then continues fluids through for eight hours while they administer to additional doses of Mesna (lines/protects the bladder).

Jacob was also filled with anxiety. He cried for a little that morning about not wanting to go, but he walked himself to the car and focused on his DS game. Accessing the port was the most dramatic. Apparently it was a feat last week also when Jon took him. All he has to do is look around the room at the tubes of saline to get his gag reflex going. He insisted on throwing up. The nurse looked at me like I was crazy. "You better get the bucket," I said. "He says he's going to throw up." I tried to calm him and convince him that he didn't have to throw up, but it's become his way to rid himself of the fear, anger, and frustration. When he was done, he sat up tall while she put in the 3/4 inch needle. He even helped fill the blood vials. She hooked him up to fluids and we were off to infusion room 1 to wait for the "super stat" blood results. Jacob took up a chair in front of the GameCube - he stayed there all day.

Counts were sufficiently up and Cytoxan (a one hour infusion) started at 12:10 p.m. along with the Mesna & Zofran. They didn't do the 5 minute push of Actinomycin-D until an hour later. Then we pee and wait on fluids until 4:10 p.m. for more Mesna. No Vincristine today either. The clinic closes at 6 p.m., so the idea was that we would move over to 2800 at the hospital to wait for the last Mesna dose at 8:10 p.m. and hydrate. The other solution was to hydrate more rapidly until 6 p.m. and then go home and give the Mesna orally at 8:10 p.m. It was nice to be driving home at 6:30 p.m.

Jacob admitted that he liked the treatment at the clinic better because is was shorter. The main reason he wanted to go to the hospital was to play Mario Smash Brothers Brawl in the play room. Once we were home I went and rented the game from the video store.

We are looking forward to THE BREAK in his treatment protocol. NO CHEMO weeks 11 & 12. In a couple weeks we go for CT scan & ultrasound. Week 13 we review all the results. If things go as expected, we'll continue with another 4 rounds of chemo (VA only). If something comes up, we figure out how to deal with it.

He got REAL nervous when he saw the syringe of Mesna. I don't know if he though I was giving him a shot or what. I mixed it with some berry juice, plugged his nose, and told him to drink fast. He claimed it "tastes good."

At 9 p.m. I was tucking the kids in bed & giving Jacob Zofran & Ativan.

At 9:10 p.m. Jacob threw everything up.

At 9:15 p.m. deja vou - I gave Jacob Zofran & Ativan & kissed them good night.

At 11:15 p.m. - Silly me - lifted/dragged/carried Jacob to go the bathroom. My neck & back ache are NEVER going to go away. He may be a skinny 78 lbs, but that's TOO heavy for me.

At 5:30 a.m. Jacob was going the bathroom & I got him to take more Zofran.

At 9:45 a.m. he threw up the delicious banana bread grandma made.

At 9:50 a.m. he ate another piece.

So far today he has watched Herbie Goes Bananas (which brought some laughter out of this exhausted kid) & part of Happy Feet. He slipped away to the big screen to play Brawl.