Good Bye Wall E

Well we initially were admitted into the room the Aly was diagnosed in - - and although we have since spent the night in that room, this time I wanted no part of it.  I am not normally one to ask to have my room changed, but knowing we could be in the hospital for a little while, I knew I couldn't do it in this room.  I mentioned it to the nurses and while I went home to gather some belongings they arranged to have us placed in another room - - I was very grateful.  Well we settled in and the surgeon came into to discuss the removal of her port - it was scheduled to happen on Wednesday March 21st as early as they could.  I understood that there were others who had to have surgery that day but I wanted Aly's done early.  She had to fast before the surgery and having just finished steroids, she would still have a healthy appetite in the morning and I would have to distract her from having anything to eat.

Luckily they came and got us for surgery at about 9:15am.  As we were prepping for surgery I told the doctor and nurses that Aly is quite feisty, specially when waking from sedation ..... they just smiled at me like I was over-reacting or something.  The procedure didn't take long and by the time I grabbed a coffee and returned to the waiting room, not much time passed before the surgeon and her resident came looking for me with a funny expression on their faces.  They said - umm she's awake and she is asking for you.  As soon as I entered the recovery area I could hear her screaming ..... ahhh that's my girl I said.  She was particularly feisty this day and I could do very little to console her as she didn't want me to look at her and didn't want me to hold her - - but after some time I finally got her to sleep then we were returned to her room.  Luckily they put an IV in her arm while she was sedated so she now how to have all her antibiotics given to her in her arm.  When Aly woke up again she was happy to see that her Granny was there ..... and she was back to her usual self.  She actually likes to stay over in the hospital.  It wasn't until that night that she asked why there was a patch over Wall E ( her port)  I told her that Wall E was no longer there ....... and she started to cry.  I weird reaction I guess, but she really identified with her Wall - E and spoke about it like it was a person ( or a fictional robot garbage compactor).  I later explained to her that Wall E has gone onto another mission to help another little girl.  The next day however she still referred to her IV pole as Wall E, so I guess he will remain with us for a little bit longer.
 We were discharged from the hospital after 4 days and sent home with the yuckiest tasting oral antibiotics and were given home care to change her dressings daily from the surgery.

  So with her port gone - - each visit to the clinic will mean that she will have to be poked with a needle like adults are ..... this will not go over well.  I will be open minded and see if she handles it well, but I would prefer that he port be put back in considering she has 2 years left of treatment.  I shall keep you posted.

Another infection

Well maintenance isn't all it's cracked up to be.  I am not sure what I was expecting, but her multiple drugs she takes on a regular basis and the fact that one of them is steroids has proven to have some challenges.  The moods, cravings and appetite she has while on the steroids, even though its only 5 days a month - is crazy!!  And to think this is going to continue for the next 2 years!! I can't imagine what it will be like once she goes to school in September - the poor teacher.  But although I complain about all of this, I have to say that my little fighter is doing well.  Her counts continue to be where they should be, her hair is growing back ( blonder than before), she continues to grow and put on some healthy weight.  We know alot of other little fighters out there who are going through much tougher times than Aly, so it sounds so strange to say, however I am grateful for the type of cancer she has and the fact that we have made it into maintenance with very few serious issues. Obviously I would prefer that she not have cancer at all, and when she was first diagnosed and I was told that she had the "good" leukemia - I was furious that anyone could call any form of cancer the "good" one ..... but now I get it.

We have however, had one hurdle while in maintenance - - Aly's port.  I guess you could say that her port has been trouble since day one.  The only times she has been admitted to KGH was for blood infections.  Doctors could not truly pinpoint the issue back to her central line, however it was the only thing to explain why she lost the ability to move her arms back in the summer.  She always complained that it hurt when they accessed her port, and although everyone said that it doesn't hurt - - maybe it did.  She was always very protective of her port, would cover it with her hands often and at night while she slept she would also have her hand on it.  About a month ago after her nurse removed her gripper following treatment, some icky fluids leaked from her port ( sorry for the details) so a swab was done and extra blood work was done to see if her blood was growing any bacteria.  Results for her blood came back negative, but there did seem to be a pocket infection surrounding her port.  As a result we were sent home with some oral antibiotics to add to her   list of meds to take.  The infection appeared to go away and Aly never developed a fever throughout this whole time.  It wasn't until our last clinic visit (March 20th) where she receive IV chemo ( vincristine) that the same issue happened ( and I am always the one that seems to notice it first).  Just as the gripper was being removed from her, more yuckiness oozed from her port.  By this time this gripper was out and the nurse went to get the Doctor as Aly had a total meltdown in my lap.  Its tough to even touch her chest where the port is, but at this moment I was holding her down while the nurse attempted to squeeze out any access "stuff".  Once the Dr arrived a decision was quickly made - - IV antibiotics would start immediately, we would be admitted and her port would be removed asap.  So we had to put the gripper back in for the time being and the nurses wanted to freeze the site again before accessing, but I figured since she was already in a state, we might as well just do it now so that she could hopefully relax a bit with no more pokes. We were placed in a temporary room in the clinic and the antibiotics ( vancomycin) was started immediately.  At this time I went to get a coffee and attended a meeting at the hospital that I had with the pediatric oncology team ( I am the parent rep) while Granny stayed with Aly.  Just as our meeting was about to end, Aly's doctor was paged and she came over to me and said Aly is reacting to the meds she is getting.  She seemed rather calm about it and said she would be fine, but regardless I rushed back to the clinic to find Aly on her bed, playing on her ipod with a face the colour of a cherry!  I guess it is a normal reaction and all they have to do is slow down the infusion of the anitbiotics.  We eventually got to go upstairs to our room!