Sunday, November 13, 2011

I cant believe another month has already come and gone.  This last week Skyler had his monthly clinic visit and it was also his month break from his dreaded back pokes, so all he had to do was get a quick push of Vincristine.  We were in and out in under an hour, which is really quick when it comes to clinic.  Even though I knew this would be a short visit I also knew I was going to have to make some tough decisions so I wasn't looking forward it.  Skyler has been on Micafungin everyday for the last year.  This is an IV antifungal medication that he has been on to clear the infection and to prevent it from coming back.  We have no real evidence that the infection is still active even though his liver is still engulfed with calcifications from where the infection was.  This is how his liver is going to look for the rest of his life unfortunately.  At least it isn't active.  We have been talking about when to stop this medication for awhile now and we decided that a couple months into maintenance would probably be a good idea because we aren't expecting his counts to drop too low anymore.  There isn't a specific protocol for this because kids with this type of infection usually don't survive.  Needless to say I have been very hesitant to stop this medication because it was this fungal infection that almost took his life, not the cancer itself.  They pretty much have left the decision up to me about when to stop it, and up until this last week I wasn't anywhere close to being comfortable stopping it.  But for some reason I felt ok agreeing to stop it this week and see how he does.  Dr. Lemons said that at some point we just have to bite the bullet and do it.  I have been a nervous wreck this last week but so far so good.  Please pray that this monster of an infection will stay far from Skyler and that it wont return.  That is a scary road that I don't want to go down again.

Along with stopping his micafungin I also made the decision to pull his dialysis catheter and place a port in his chest.  A port is a central line that most kids with his diagnosis have.  It is placed under the skin and into a vein that goes to Skyler's heart.  The first line he had was a port but it got infected when this fungal infection started.  Technically a port is less of an infection risk than his dialysis catheter because its on the inside of the body and is only accessed when he needs blood draws or chemo.  But I still associate infection with ports because we obviously didn't have a good experience with the first one.  However, since his treatment is so long a port makes sense because he wont have to do dressing changes every four days, I wont have to hep lock it everyday, and he can get wet.  So baths and swimming will become part of his life again.  Since I don't have to hook him up everyday, placing a port now just makes sense.  There is no need for that big line hanging out of his chest if I don't have to use it everyday.  I also have had this feeling lately that his line now needs to be pulled.  I'm not sure if its because I don't want to have to change his dressing all the time if I don't have to or if its my gut telling me this is the right decision.  All the docs at clinic agree that it is time, so we have an appointment with the surgeon on Tuesday and surgery on Wednesday.  I chose to have the same surgeon who removed his spleen to do it because he knows Skyler really well and he also knows that he has had a line in essentially every possible part of his body.  The appointment on Tuesday is to see if there is actually a place on his body to place a port due to the fact he has had so many lines.  If he can find a spot then we are good to go for the next morning.  Even though I feel that its time to do this I am scared to death.  This means another surgery and a new line that I'm going to have to get used to along with Skyler.  Its weird to say, but I'm going to miss his line he has now because I have used it so much that it has become become second nature for me.  It will be weird to have to get to know the ins and outs of a new line.  When they have to access the port they have to poke him and attach a line to it, when they are done they just take it out and send us home.  Since I like to do all his blood draws and be the one to work with the line I want to be able to learn how to access him as well.  It will be weird to have to stick a needle into my son but its just another thing in this cancer world that I will get used to.  Skyler is pretty scared about this whole thing and not a fan of getting poked even though they will numb it first so please say some extra prayers for him and for this surgery to go well.  He has been doing so good lately that the last thing I want to do is rock the boat and risk something bad happening again, but being able to stop the micafungin and be able to place a port is actually a good thing.  It means he is getting better.  He is finally entering into a place of this journey where things are finally starting to become how they should be.  A "normal" cancer kid if there is such a thing.

 Here he is getting the ever so fun vitals, height and weight done.  He has grown so much this month.  Everyone commented on how good he looked and how big he has gotten.  No one here has seen him this chunky before.

And of course he has to have some snacks before getting chemo.  I didn't get pictures of him getting it because I was so busy talking to the doctors.  By the time I was done talking he was all ready to go.  I love fast clinic visits like this.


Tonya said...

I will certainly pray that all goes well with surgery!! What a tough decision for a parent to make! I recently had surgery last week myself, and Skyler was on my mind, I thought if this little guy can go through so much, so can I! He is such an ispiration. He is always in our thoughts and prayers.

Lisa said...

Prayers for you, Crystal, as you make all these tough decisions, and for Skyler as he goes through another surgery. May this truly be a Thanksgiving of hope and miracles as you both continue on this journey.

lea said...

I am going to make a video of McKall for Skyler. She has a port and absolutely loves it.Maybe I can get her to tell Skyler about it in her own words and even show it to him... She had a picc line the first 5 weeks of treatment and hated having it... She STILL talks about how grateful she is that she doesnt have to have that "tubey that pokes out of my arm." She was also so happy when she got to get "all the way wet" in the tub. She stayed in for over an hour. I had to keep adding more water. ALSO, as far as getting used to it. McKall cant even feel the poke because the EMLA works so well. We just put it on before we leave for clinic, and by the time she gets accessed its been at least an hr and a half and she doesnt even flinch. As for you, I am sure you will catch on super fast! If "I" can access Mckall, you can DEFINITELY do it! You are amazing. Hang in there...there is definitely nothing worse than unknowns in this cancer world, and change is scary, but Im excited for you both, and the opportunities this freedom will bring for you! Ill just look up your email address or cell # on the cuties site and send you the video as soon as I get it done. Shes asleep now so it might be a couple hours...Im sure you probably already know all this, but I hope it helps ease your mind a bit.

susi and adam said...

He looks soooo good. I will definitely keep you both in my prayers especially this next couple of weeks. Happy thanksgiving!!! My miracle babies are turning 4 on Sunday. Four years ago I came home from the hospital on thanksgiving day with no babies and one in critical condition.....I know God answers prayers and that he will continue to watch over both of you:) much love!!