IV chemo and removal of stitches

So I was trying to prepare myself for our first IV chemo since her port was removed AND the removal of her stitches from her port site.  I knew it was going to be quite an event, I even called the week before to prepare the nurses and ask for some sedation or some drugs to calm Aly down a bit.  The daily nurse visits to change her dressings where her port once was - - we challenging enough, I couldn't imagine the nurses at the cancer clinic trying to remove her stitches.  It would have been close to impossible without someone ( perhaps Aly) getting hurt.  Once we arrived at clinic on April 17th, the nurses agreed with me and were prepared with some adavan (anti-anxiety medication) for Aly.  We dissolved the small pills in some apple juice and Aly drank it with no issues.  It really didn't take too long for the drugs to kick in - - as she did some crafts and had fun in the playroom I began to see her stagger a little, so I had to stop her from running around as I didn't want her to fall down and hurt herself or someone else!  Once the nurses were ready, we went into the treatment room and prepared for the IV "poke". She definitely put up a fight ( she always does) - but it was nothing compared to what it would have been without the drugs.  At times she was even compliant and pleasant to the nurses, so we knew for sure the drugs were working!  We got the IV in and the cutest part was when Aly saw her IV pole ( who she calls Wall-E).  She immediately says, "Wall-E !! I am so happy to see him".  It was so cute.  I think it is comforting to see him/it.   The chemo she received that day was vincristine and I was surprised (I don't know why) at the caution and care the nurses took while Aly received the chemo.  Two nurses stayed with us the entire time and one of them also checked the line regularly to ensure the line was clear and the drug was flowing properly.  Once the treatment was complete we decided to keep the IV in until we received her blood counts back.  They moved us to the corner of the treatment room where Aly could rest a bit and lay under some warm blankets and maybe fall asleep.  Well that plan did not work at all.  She did rest a bit and watch the movie up on my ipod, but  before long I could tell her spunk was coming back and I figured the drug was wearing off.  I called the nurse over and we agreed that we needed to get the stitches out asap!  Once Aly saw the scissors and tweezers that was it - - the tears started and she began to fight the nurse off.  We tried everything - first we just held her down, but she doesn't like that at and now says " don't hold me - don't hold me". So we try to explain that we won't have to hold her if she lies nice and still with her arms down at her side.  Eventually, she did exactly that and the nurse was able to remove the stitch from the right side of the site.  But it was not over, we still had one stitch to remove.  I think at this point it was like she never had any adavan.  Aly had a full blown meltdown.  We tried the same approach as the other side but nothing worked this time.  So the nurse and I agreed that we just had to do it.  So I had the job that most parents would hate, but I prefer to the one closest to her, even if it means I am the one who is physically holding her down.  The nurse was awesome and we got it done pretty quickly, however what we didn't realize that during Aly's fight/struggle she managed to rip the IV out of her hand ( sorry for the graphic details) so there was blood everywhere, but we were able to cover it up so that Aly didn't see it.  It literally took seconds for her to recover and was back to being silly and laughing again.  We took it easy for the rest of the day as we knew that the adavan was still in her system.  The wound is healing very nicely and we no longer need homecare.  We just need to keep it dry and allow it to be open to the air for about 2 weeks.

  Before leaving the clinic I did have a chance to chat with Aly's oncologist and nurse and we discussed next steps for Aly and whether or not she will get another port.  My opinion is, I just want what is best for Aly.  If another port means that she will be prone to more infections and possible hospital admissions then I don't want that.  She never got comfortable with her port being accessed anyway, so I suggested we wait until her next clinic visit to see how she handles getting an IV without any medication / adavan.  We also agreed that there is not really a need for Aly to come every 2 weeks for bloodwork.  Her counts have always been great, and the protocol only calls for monthly bloodwork, but here in Kingston they like to do it more often as a precautionary step.   I asked if we could just come in monthly and do the bloodwork and chemo all in the same day.  That means fewer pokes for Aly and hopefully a better experience for her.  I will still have to notify them if she feels unwell and of course call ANYTIME she might get a fever.  I figure the worst case scenario is we have to give her a small amount of adavan each visit to calm her a bit.

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 !