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.
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