Life without a port!

So today we had our first clinic visit since her port was removed ..... and it was a bloodwork day.  When we arrived the nurses put some cream on her arm ( on the inside of her elbow) to freeze the area so that the "poke"would not hurt.  She had her visit with the pediatrician ( she rarely sees the oncologist anymore as she is progressing so well).  He was able to complete his entire examination with very little drama from Aly ...so we were off to a good start.  He even mentioned how nice it was to see Aly smiling and full of energy.  We talked about whether or not another port would be put in, and I was glad when he asked me what my preference would be.  To be honest, Aly's port was nothing but trouble from day one.  It felt like she had and infection every few months and had to endure the taste of horrible antibiotics in order to treat the infection.  Perhaps this could explain why she freaked out every time they accessed her port - maybe it did hurt her.  Maybe there were some underlying issues and each time they accessed it, it caused her pain.  I guess we will never really know.  I told her doctor that I only want what is best for Aly.  If keeping her "port-free" is the best thing for her, then we can do that.  However, I was very clear in telling him that Aly has been through enough trauma (and drama) over the past 10 months and I would like to keep the next 2 years as low key as possible.  I asked about the possibility of a hickman line ( this is similar to the port, however it is visible from the outside - see below) but her doctor was concerned that Aly was a very active child and didn't want her to get it caught in anything, or have other kids pull at it - I would not want that either.



I mean realistically Aly did not really embrace the port she had. Accessing her was quite an event, and I don't recall her ever having a tear-free access unless she was sedated, so I am not sure how much worse a "needle-poke" would be.  I said I was willing to see how she does over the next month and perhaps we could regroup to determine what would be best for little Miss Aly.
  About 20 minutes after that check-up, it was Aly's time for bloodwork.  Instead of doing all of this in the procedure room that is equipped with 5 chairs for bloodwork etc., the nurses decided to take Aly into a private room.  My guess is they wanted to have a door that they could close so that other kids / parents could not hear her screaming ( no one wants to hear that).  Well she is no fool, she knew exactly what was about to happen, but we were able to lure her up onto the bed to sit on my lap.  We figured if she sat on my lap I could assist at distracting her, and also holding her if possible.  Well the first attempt did not go as planned.  As soon as the needle entered her skin she freaked out and moved her arm enough to cause the vein to bruise. The nurses were able to get some blood, but not enough - so we had to do it again :(  This time we agreed that wrapping her legs and arms in a blanket would be the best way to restrain her.  The issue with this, is Aly does not like to be held down ( ...and really who can blame her).  She always says " don't hold me mommy don't hold me, I want to be brave."  It's horrible to hear, and I will let her go when I can, but unfortunately there are times where she needs to be held.  So we attempted to distract her with my ipod and at first I played the movie "UP" - but that didn't cut it.  So as the nurses did there work, I frantically tried to find a song on the ipod that she loved so that we could distract her.  I found Katy Perry's "Teenage Dream" ....and although Aly continued to scream, kick and cry, as usual I was able to stop for a minute and find the humour ...... because there we were at the cancer clinic, in a room with 3 nurses, a child-life worker, Aly and myself ..... and we were all singing "Teenage Dream" and moving to the music.  Now Aly really wanted no part of it, but it was pretty amazing to see the nurses continue to do their jobs, make a conscious effort to hide the needle from Aly - yet still push forward and get the job done.  I truly respect that.  I am pleased to say that within seconds of it all being over, Aly was wiping her tears and asking go with the nurse to pick out her own superhero bandaid.  There was a drawer full of bandaids like hello-kitty, princess', tinkerbell etc .... and what does Aly pick - the Superheros! ( what a gal).  She immediately wanted to go home, but we had to wait for her bloodwork, so the nurses gave her some Easter treats and after convincing her that there would be no more pokes, she went back to the playroom and continued to play ( fairly well) with some other kids.

Our blood counts came back all in order, so we were off!  We return to the clinic on April 17th for chemo which will be given to her over IV ..... stay tuned to see how that goes !