September 8, 2009 Rough day at the clinic today. It was the day after a holiday, so it was packed and we were there from 8:30 to 1:30, mostly waiting. She did well with the waiting, but decided she didn’t like “Sleepy Milk” after all and John and I had to hold her down while the anesthesiologist put her under. Fortunately, with her port being pretty much directly connected to her heart, the anesthesia works within 10 seconds, so it wasn’t a very long fight. Still, it just seemed like such a setback to see her so upset about it when she has handled it so well in the past. The anesthesiologist said that it is common, though, for kids to get upset about being put to sleep after they’ve had a break from it for while.

So here’s what a clinic day looks like… we arrive today at 8:30 am and sign in at the hematology/oncology desk at the touch screen (Tanner likes to do this herself). We then take a seat in the waiting room until we are called up to register and pay. Tanner gets a bracelet at this time and then we sit back down again until we are called into clinic. When we are called in, she gets weighed, measured and her vitals taken, then we get sent to an infusion chair to wait to get her port accessed. Her favorite nurse, Carrie, takes us back to the access room and Tanner sits in a chair to have her port accessed. She pulls off the Glad Press N’ Seal we’ve put over her port to cover the little blob of numbing cream that we put on it earlier that morning. Once that’s off, she cleans the cream off with a tissue and then the nurse sterilizes it with a cold cleansing stick. Then, they put the needle in through her skin into the bubble on top of the cone-shaped port. She likes to watch them put the needle in and wants to count down 3-2-1. Today, she didn’t even flinch. Then, the nurse puts a big plastic sticky bandage over the needle to keep it in place. The needle has a little black box attached to it and then an IV line coming off of it.

Once she is accessed, we go back to an exam room and wait for her blood counts to be run and for the doctor to come to see us. Today, Tanner’s counts were off the charts, for some reason that no one can explain. Her neutraphils were 3,500, up from 1,300 the time before and from 610 the visit before that… crazy and almost normal, although her immune system is still not considered normal. The doctor comes in an examines her, goes over her counts with us and answers any questions we may have. Sometimes, you might get two doctors; if you are seen by a fellow, the attending has to come in later and follow up. Once the doctor has seen counts and talked with us, he orders the chemo by her weight for that day. It takes a little while for the chemo to come up, so normally we go back out to infusion chair so we free up the exam room for the next patient, and when the chemo is ready, the nurse comes out and administers it over a 10 minute period. But, today, they were backed up so they sent us down to surgery and told us to come BACK up after surgery for chemo. Sigh.

Sometime during this whole process, a doctor comes by to run a nutrition test on Tanner for a study we are participating in. She puts some electrode stickers on Tanner’s foot and hand and hooks her up to a machine for a couple of minutes while Tanner lies flat. This is the kind of study I like… it doesn’t hurt.

When you go to surgery, you have to sign in and register again before waiting, again, in the outpatient surgery waiting room. Depending on the day, the wait can range from 10 minutes to an hour, like today. When they are ready, they bring us down to a holding room in pre-op and go through some vitals, and pre-op information before we are taken to the OR. This part usually takes about 10-20 minutes. Once we’re in the OR, we are allowed to wait with her there while they put her to sleep, then John and I go down to yet another waiting room while they do her spinal. It usually only takes about 10 minutes to do the surgery, then we go to the recovery room where our favorite recovery nurse, Leigh, usually tends to us and Tanner. She’s awesome and requests Tanner when she sees her on the board. Tanner has to lay flat for 40 minutes after the spinal to decrease the risk of headache and backache, so they let her sleep all that time, while John and I sit next to the bed and… you guessed it… wait.

Once they wake her, she recovers very quickly. They use propofol for the spinal’s (yes, the Michael Jackson drug) and she wakes up as if she’s taken a nap and is pretty alert within minutes. Normally, we go straight down to car and leave, but today, we had to go back up to the clinic for chemo. Mind you, Tanner’s had nothing to eat since the night before and it is 1 pm. Upstairs, they hook her up to get chemo and we wait, watch TV and eat chex mix until that’s done. Then, we start the process of getting the very sticky tape bandage off of her chest, so she can have her port de-accessed. Once we’ve taken the bandage off, they take the needle out of her port. Oddly enough, Tanner has more anxiety about them taking it out than putting it in. Again, she wants to watch and count down. Once the needle is out, we stop by the front desk again to make an appointment for next time and… finally… go home.

The combination of the three chemos Tanner got today have really messed her stomach up and she has been sick to her stomach all afternoon. She is slowly getting a little better and I hope will be fine by tonight. I’m going to see Wicked tonight with some girlfriends and you know who kids want when they don’t feel good… mama.

Suffice it to say, it’s a long day for adults, much less a 6-year-old and we’re glad it’s over. I know this is a long post, but if you’re reading this, you’ve made it through and I appreciate your patience. September is Childhood Cancer Awareness Month and I think it’s important for people to realize what these kids go through. Right now, Tanner’s going to clinic every 10 days, but for most of the first 6-9 months, she goes through this whole ordeal every week… every week. It’s a lot to ask of a kid and many have it much worse than she does. Lots of kids spend months shuttling back and forth between the hospital and the Ronald McDonald house undergoing intense therapy and extended hospital stays. Hopefully, through research, we’ll find a better way. Or better yet, find a way to prevent this mess.

Love,
Beth