Tuesday, March 24, 2009

Getting poked is a bundle of fun.....or not.

Getting stuck with a needle sucks. Explaining this to young kids is futile. I'm not sure at what age this changes, because I have seen some adults act looney in the lab. Every person has their thing. Poking me doesn't freak me out, put me in a room with an mri machine and it's instant panic. I'm not judging, I'm just saying. After 5 months- it is not any better for Lily. It got better for a little while and then it exploded. My theory now is that it didn't really get better- she was just too sick to put up as big of a fight for awhile. Florence hates to bundle kids. But...when they are kicking and screaming, sometimes it's better to get on with the inevitable than prolong the suffering. I know one thing for sure after today- building up to the poke is WAY worse than the event.

Monday night Phillip declares he does not want to go to the beach with the boys n girls club. I tell him that is problematic because I have to take Lily into clinic, unless he wants to go...sure he tells me. Well- if you go, you have to have your blood drawn. Ok. Hmm, not the response I expected- this was the kid that Phil had to take in and hold for immunizations because he would go nuts. I ask him if he's afraid, he said no- the last time it didn't hurt. allrightythen. Well if Phillip goes, then we can take Bella and get her blood drawn too and he can help with the little ones since he is such a master now. Surely I jest.......and yet....

For those who may not be caught up- I am sadistic and like to have kids poked routinely so they get nice and used to medical procedures... No this is the big p53 mutation testing I've been talking about. So Kiera goes to the beach, and I take the other 3 into clinic. As I am unpacking the stroller- 2 bags, 3 kids there is a car waiting. I wave her off to tell her we're just getting here- and to carry on with trying to park. She is chatting with Lily and pulls off her cap to reveal a similarly bald head. Lily runs up to her and is in awe. Magically a parking space appears right by us and we walk in together. Lily is excited. A chemo buddy. This lady has breast cancer and is positive for BRCA family breast cancer gene. She is on her last treatment. In a 5 minute span we discuss everything from diagnosis to hysterectomies and I know in an instant, this is an impression that will stick with us both forever. It always amazes me how sometimes a complete stranger can make such a big difference and I must pass along that we all have the potential to BE that stranger. Sometimes we try to help and get shot down, but sometimes just a word or two can make someone's day.

I can tell by the look on Florence's face- that by my bringing along Phillip and Bella today, totally did NOT make her day. I feel bad, she always goes out of her way to make it easier on me and I just plopped a puddle of goo on her lap. And in true nightengale fashion, she already is coursing a plan of attack. She calls in reinforcements, get the orders written and starts the trying task of getting the kids taken care of. We start with Lily since her numbing patch has been on the longest. It starts off well and rapidly deteriorates- 2 cleanings of the port site later- she calls in help. In this 2 minute period- Lily is losing her mind. She's kicking and rocking and screaming. By the time Barb and Miss Julie get there- we get booted for some calm down time(asked nicely to take a walk) and they plan how to best handle this. Julie will entertain Bella and Phillip and prepare them for their big pokes and we will bundle Lily and get it done. She tells me I will not be happy with her for this decision. I don't know why everyone assumes I am the one with the problem bundling her. It sucks, I'd like for her to not be held down- but a half an hour of screaming in terror is every bit as psychologically damning- because in that half an hour she thinks she has a choice- when in fact she does not. So we get er done. Breathing does not work for more than 2 breaths, she will not allow herself to be distracted and refuses to consider alternatives- that leaves us with bundling.

As we finish- Phillip comes in with what is abject horror and the verge of a breakdown is glimmering in his eyes. He is holding a cotton ball on one arm and has another patch on the other. Oh mother fudescicle. A nurse I do not know is profusely apologetic and is herself on the verge of tears. She retreats and Phillip explains she tried- one didn't work, the next one she poked around and wiggled and it hurt. Now the pressure is back on Florence. We send him to work with Miss Julie while we just bundle Bella- who is now the true tough champ of the day who fought being bundled but didn't even flinch with the blood draw. Phil and I have often hypothesized that she has a disorder which causes limited physical sensation as she is one of the toughest little cookies we've seen. She does feel pain, but not like the others. She is quite proud of her owie and crawls up into the stroller- that's her sign for pau- lets go home.

Phillip is in Rainman mode. We now have to poke him for the 3rd time and he's not happy. This is pancreas boy who was stuck repeatedly- and had a feeding tube shoved down his throat twice and we won't even discuss the foley catheter- if you don't know what that is- be grateful. I'm out of patience and finally tell him to buck up and toughen up a little. I will probably be counselled about this later....Florence sticks him and he immediately jerks away leaving the vein to practically spurt blood out of his arm. Now he has to be held. Ugh. We again get er done. And now...we have to de-access Lily which is almost as much fun as the accessing part.

Lily's counts are rebounding so we don't have to come back til Monday. Florence will check her counts and then send us up to the ward for chemo. She must love us, otherwise she'd have them do all that on the floor- and that is why she is awesome at what she does. And she always tells ME what a good job I did, and then hands out toys from the treasure chest. Talk about someone who makes a difference.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)