Miss Nurse...

How many pokes does it take to get to the center of my power port?

I don't know, let's ask Mr. Owl...

Mr. Owl, how many pokes does it take to get to the center of my power port?

Let's find out.

One...

Two...

Three...

Four...

Four!

Yup, poor Emmah had to get poked four times before a successful sticking. Four separate nurses, four separate attempts before finally achieving success.

A two and a half to three hour consultation visit became an agonizing six hour ordeal. After the consult they wanted to draw labs on Emmah and so needed to access her port to get a blood draw. What started at around 12:40 (the poking) didn't end until we were walking out to the parking garage a little after 4pm.

Aside from all the pain (Emmah) and suffering (we... and Emmah) were going through as they used Emmah as a pin cushion, we were feeling the need to have someone... ANYONE... there be able to access her. I mean if we were going to be going here for continued treatment we needed some sense of security that they'd be able to access her and not have her get stuck multiple times... every time.

For the record... a regular successful access and draw from start to finish... 10 minutes tops.

After the third one, she (understandably so) was ready to go home, but there was a slight problem. The first nurse even though not properly accessed drew back and we think removed the heparin from her port. Heparin is something that is added to the port when it's not going to be accessed/used for a while... it's a anti-clotting agent. So now she was without and we felt it best to have a successful access so it could be put back in. What followed was difficult to sit and be witness to.

After the third attempt we decided that since it was well after lunch (and we hadn't eaten anything since leaving the house at 9) we thought it best to take a break and go get a snack. Before going, the Child Life person offered up a bribe of sorts. She said that since Emmah's been stuck three times, she could take three gift cards out of the basket... and if she allowed a 4th attempt, she could pick one more... one for every poke. So away we went to snack and talk and Emmah decided to let them have one last... ahem... stab at it.

So the fourth time was the charm (thanks to Kelly) and Emmah walked off with a total of $20.00 in gift cards... a small token for the suffering, but a nice thing nonetheless. She chose two from Target and two from Best Buy.

In spite of the sticking... we've decided to let them (Comer Children's Hospital... University of Chicago) have a go, just feeling like they are a research center and a much larger institution with much more at their disposal... and most importantly a Neuroblastoma specialist. We'll be able to do things here (if need be) that aren't available at Hope, or even Children's.

We've decided on a medium dose chemo (which we will be starting on Monday) that is supposed to be well tolerated and won't/shouldn't interfere with quality of life so much. We will be going in for the first one, but it is done out-patient and going forward we will have a home health care nurse administer it. One agent is oral and the other is through IV. I believe it (the schedule) goes something like five days on, two off, then another five days... then one week off then start the cycle again. That of course is if it's well tolerated by Emmah. There are other things, but I won't bore you with the details of it.

As a side note... because of the extra time it took to get her accessed, we ended up going over the meter at the garage. Up to 3 hours was going to be only $6 with validation... 3-6 was $11, and over 6 was $16... 22 minutes cost us an extra $5 as we were 6h 22m. We were thinking that when we went in $6, and it ended up costing us $16. It's just the principle of the whole thing... and the extra $$$$$.

KEIYTAP