Tuesday, November 29, 2011

Skyler is doing surprisingly well and we should be headed home in the next day or two.  This is definitely not the outcome I had hoped for but I still dont regret the decision to try and place a port.  As hard as things seem somedays I know that things happen for a reason.  Our trials make us stronger and we arent given anything in life that we cant handle.  Obviously Skyler is a STRONG kid and as hard as it is for me to accept, we have faced challenges that are going to strengthen us and make us better.  If this hadnt have happened I wouldnt have been able to have the conversations I have had with some amazing women, I wouldnt have been able to be here on a huge milestone day for a fellow cancer friend, and Skyler wouldnt have learned that pokes arent as scary as he thought.  He has had worse happen to him and I have been able to see the proud look on his face after he is done with each and every poke this week and know that he can do anything.  I dont know how I got so lucky to have this sweet child as my own.  He is truly amazing and I love him with all of my heart.  One day I hope to be able to be as strong as he is and to carry on in life the way he does amidst the challenges he faces everyday.

Sunday, November 27, 2011

Im too exhausted to go into too much detail, but we have been admitted to ICS at least for a couple of days.  Skyler has a blood clot in his neck and his brand new port is infected.  Yep infected.  (Insert a couple bad words here)  I heard those words again today that Skyler is famous for "Wow this normally doesnt happen."  Ummm...thanks doc, just what I wanted to hear. We just got back from surgery to remove the port and they have started him on a couple strong antibiotics.  One of them being the one that caused his hearing loss. 

I'll post more when I can actually think straight....

Thursday, November 24, 2011

Happy Thanksgiving everyone!  I have so much to be grateful for this year,  but the one thing that I am grateful for the most is that I was able to spend this Thanksgiving at home with Skyler.  I cant help but think back to where we were a year ago today, sitting in the PICU hoping that my baby would get better.  This year he is walking, talking, running around and playing, and even able to eat Thanksgiving dinner with us.  We are so blessed! 

                This is how Skyler celebrated Thanksgiving last year

Today I am also grateful that Skyler's surgery yesterday went well.  It took about an hour and the surgeon said he was able to place it in the same vein his old line was in, which is good.  Skyler and I were both pretty nervous about the whole thing but I was doing better than I thought I was going to be up until I had to say goodbye to him.  No matter how many times you do it, it never gets easier watching your child being taken away in the arms of someone else while he is crying out for his mommy to save him.  It feels like a swift kick in the gut and heart every time.  It hurt worse when he told me later that when they took him back to the room to give him his sleepy medicine he was calling me to come help him but I never came.  Talk about heart wrenching.

When he started waking up in the recovery room he was in so much pain.  I have never seen him in that much pain after a surgery before.  The nurse had to keep giving him more and more doses of pain meds but it only took the edge off, he was still hurting so bad.  We actually had to be moved to another part of the unit for a couple more hours because he was still in too much pain and  he wouldn't drink so they didn't wanting me taking him home yet.  The nurse finally got a one time order of a stronger pain med and that seemed to calm him down more.  Also, if you remember from the beginning of diagnosis Skyler has a bad reaction to EKG patches.  He gets such severe burns from them that they listed them as an allergy so he wouldn't get those put on him again.  Its in his chart and on his bracelet every time, and I also told this to the anesthesiologist before surgery so she wouldn't use them.  I told her he does great with the infant leads so that's what she needed to use.  You can imagine the anger I felt when I saw two burns on his back from the EKG patches when he woke up.  She was trying to place the blame elsewhere but the truth is she just spaced it and made a mistake.  I was fuming inside but wasn't able to show just how angry I was because Skyler needed me to be there for him.  Luckily the wound team knows him really well and they were able to come and get a script for the cream that worked last time on the burns.  I have been slathering that stuff on so thankfully they haven't gotten too bad yet.

I don't know why, but I really wasn't expecting him to be in that much pain afterwards.  I thought it would be much easier, so I promised him that we could go to Texas Roadhouse for dinner that night.  But after seeing how miserable he was and that his bandages were still soaking through with blood I for sure thought he would have forgotten about it or want to go when he felt better in a couple of days.  I was so wrong.  We were able to leave the hospital at four and we went directly to Texas Roadhouse and met my parents and Ty for dinner.  He was in so much pain but wanted to go so bad that he said he was fine, even though I knew he wasn't.  It just shows how tough this kid is.  The last thing on earth I would be up to doing after surgery is going out to eat, but nothing can keep this kid down.  He is my hero and such an inspiration to me.  On the way home I was so exhausted and had the biggest headache and was about to start complaining, but I just had to take one look at Skyler and that shut me right up.  I still learn valuable lessons from him everyday.

I have been keeping up on the oxycodone every six hours and today he seems like he is doing much better.  It's actually alot less bruised looking today than they told me it was going to be so that's really good.  He also told me today that he is so glad he has a port now.  I pray the sites will heal up nicely and that he will be able to take a nice long bath (without Saran wrap) in one week!

Still trying to wake up

He was so sad and in so much pain here.  He had huge crocodile tears.

This was after that final big dose of pain medicine when he was actually able to calm down.  He didn't want his usual slushy and crackers, he wanted a candy cane.  You can see that there are steri strips on his neck where they made an incision and some on his chest right where they placed the port.  That square bandage is from where they took out his line and its already saturated in blood.  They had to place a bigger bandage over it but it still kept bleeding through that.  It finally stopped bleeding all the way when we got home from dinner.

This is when they took him to the other part of the unit to recover.

Finally ready to go home, but still not feeling great.  The stuffed animal is a kangaroo that he got from a sweet friend from Australia.  The reason he brought it with him is because it has boxing gloves on and he said it could punch all the bad guys away and his cancer.  We also made each other little paper hearts that said I love you and I'm here with you and gave them to each other to bring with us.  He put his in his kangaroos pouch and I kept mine in my pocket.  That way when they had to take him back to give him the sleepy medicine he could hug his kangaroo and pretend it was me giving him a hug.  He told me that when he was screaming for me to come and I didn't he hugged his kangaroo and it helped a little.

Thank you so much for all the prayers.  I hope you had a wonderful Thanksgiving!!

Tuesday, November 22, 2011

After a week of no chemo Skyler's ANC has come up to 2.0!  Thank goodness.  It's not a great feeling knowing he has no immune system and that he is also off his antifungal.  He did great though which is such a relief.  Since his counts have come up he is scheduled for surgery tomorrow to finally place the port.  We both are pretty nervous and both for different reasons.  Please pray everything goes just right tomorrow and we wont have any complications.  I better go to the store and stock up on Excedrin tonight because I'm sure a giant headache is in my near future.

Thank you so much for the continued love and support.  I'm still trying to heal from everything that has happened and knowing there are people that care for Skyler and are praying for him helps me so much in this process.

Wednesday, November 16, 2011

Change of plans.  The surgery had to be cancelled because Skyler decided to go neutropenic on us and they wont operate on someone with no immune system.  Over the weekend I knew he needed blood because he has been so tired and pale and he has also had bad headaches.  I called in and had them see us yesterday to see what his crit was and to do a type and cross.  He definitely needed a blood transfusion.  His platelets were also low but not low enough to transfuse yet.  They ordered the blood last night and we came in this morning for the transfusion.  Before we went into clinic we went to had a consultation with the surgeon to see where he could place the port.  He decided he could go through the same vein his dialysis catheter is already in, but just place the entry site a little bit toward the center of his chest so its not in the same place as his line is now.  They will also make an incision in his neck because they have to tunnel a wire through the vein first so it doesn't collapse when they put in the new line.  We cancelled the surgery tomorrow but rescheduled for next Wednesday hoping his counts will be up by then.  Dr. Lemons also had us stop all oral chemo at home for this week and we will recheck his counts again on Tuesday to see if we are good to go for the following day.

His ANC has dropped so much because they upped his chemo last month and I guess it was too much for his little body to handle.  I have been told it takes a couple months or so to find the right dose that will keep his counts in the range they want it.  Every kid is different so it takes a little bit to find just the right dose.  I'm actually grateful we went into clinic today.  Not due to the fact that Skyler needed blood but it gave us a chance to talk to the child life specialist about him getting his port.  She showed us an actual port that they will place and gave him a doll that had one in it and showed him how they access the line.  He has been so worried about this and has wanted to talk about it several times a day because he is so scared, but after talking with Rochelle he felt much better about it.  She even left us with all the supplies to take home so he can practice accessing his "cancer friend" all by himself.  This is like the port that they are going to place.

This is Rochelle showing him the steps they take to access it.

As soon as we got home he drew a face on his little friend.  He said he made it a grumpy face because getting a port accessed would make him grumpy too.  He also drew a heart on him.  So cute!

This is him accessing his friend all by himself.  That's the alcohol he cleans him with first.  He was actually really good at it.  When he was all done he said "I could totally be a doctor"

This is the part where they poke him to access the line.  Don't worry we took the actual need part out.

Putting the bandage on.

I let him hook up an old line of his and fill it with water so he could give him some chemo

This is such a refreshing site to me!  That's another weird thing cancer does to you.  A big bag of blood doesn't make you gag it brings a big smile to your face because you know its going to give your child his energy back and give him some color.

After Skyler was done pretending to access his doll he still wanted to play with it, so I let him go through all of his old medical supplies I don't use anymore so he could find some doctor stuff to play with.  This is a video of him taking care of his little friend. 

(I wrote this post last night so its a day off)

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.

Monday, November 7, 2011

Saturday was a day I will never forget.  I got to watch as my son's dream came true.  His wish was granted and he got his very own Chuck E Cheese game room!  I can honestly say that it was one of the best experiences of my life.  This past year Skyler has been through you know where and back.  Way more than anyone should have to go through in a life time let alone a 5 year old.  As a mother, all you want for your children is to make everything better for them and to have them live a long, happy, healthy life.  I've had to just sit back and watch as my child lay there suffering and fighting for his life, knowing that there was nothing I could do to make him better or to take away his pain.  So to witness his wish come true and see him truly happy was amazing.  I knew Make-A-Wish was awesome.  I've seen other cancer friend's wishes come true and the joy that it brought to their lives but you don't fully understand just how great they are until it happens to your child.  We had the experience of having the best wish granters!  Mandi and Stephanie are amazing and I know that they were put in our lives for a reason.  It's like they had known Skyler forever and worked so hard to make this room perfect for him.  I cannot imagine anything being more perfect.  The room is amazing!  They made everything just right, even down to the little details.  There was so much to look at that I kept finding new things every time I looked around. 

 We weren't allowed to go to the house on Friday or Saturday morning while they moved everything in.  They said we could come over at three o clock.  That was sure a rough morning because he just couldn't wait.  We finally left 45 min. early and just drove around to get him out of the house.  When we got there the wish granters and my family were waiting for us.  They had the door to the room wrapped like a present and let him open it up.  I was shocked at how amazing it was and was overcome with pure gratitude.  I had to try hard to fight back the tears that were trying to come out.  I didn't want Skyler to think I was sad, he still doesn't get the whole happy tears thing.  There was so much stuff for him to look at that he just walked around in silence taking everything in.  Chuck E Cheese and his girlfriend Helen were there waiting in the room too!  They also had a balloon artist come, so she was there making everyone the coolest animal balloons I have ever seen.  She seriously was amazing, I didn't know people could do that kind of stuff with balloons.  Skyler loves animal balloons so this was perfect as well.  He has a whole section just for his Wii and Xbox games with a couch that pulls out into a bed, game chairs, and a big TV.  On Thursday they took him on his shopping spree to Gamestop to pick out $400 worth of games.  He was in heaven and got 16 new games.  That night was pure happiness for him!  They also put a stand up arcade game in with 100 games loaded into it. Again, so perfect for Skyler.  They also put an old coke machine in there full of our favorite drinks.  They have a whole section just like at Chuck E Cheese with prizes to get when they get a certain amount of tickets.  They had lots of games for him to win tickets with and a whole closest full of board games.  I thought Skyler owned every board game out there but no, our wish granters were amazing and got all new games he hasnt played before. They also put an actual table with booths in there for Skyler to eat pizza at, and also got him an oven and pizzas for him as well.  They also put a popcorn machine, snow cone machine, cotton candy maker and ice cream maker in there too.  They even had a ton of cool Chuck E Cheese stuff in the corner.  Another thing he really loved was a pool table that turned into an air hockey table, chess, and checkers table. Im sure Im forgetting something because there is just so much stuff.  If you know Skyler this room is his heaven.  He said "Wow there is more stuff than I ever imagined in here.  It is so cool mom!"  Also for one of his back up wishes he was going to wish for a vending machine in our house so that coke machine was awesome.  He said "Mom they made both of my wishes come true!!"  His cousins were there and they played in that room for hours.  Skyler had so much fun and his face was just lit up with pure joy. 

Here we are at Gamestop with our wish granters as Skyler went around and picked out whatever games he wanted

Ty came along too.  He is Skyler's game buddy!

This is us just getting out of the car to see the room.  He was so excited!!

About to go downstairs to see it...I love this face.  Look at those chubby cheeks he has now!

Mandi and Stephanie wrapped the door like a present and on the bow it said wish big.  He sure did!

Yes, my mouth is really open that big...haha  Just wait till the next picture and see how big my eyes got.  Super unsettling to see but thats just how surprised I was.  Skyler is so happy!

I told ya....

This is the section of the room with all the prizes.  It was full of neat things that kids love and all labeled with how many tickets you needed to get.  It was so cute and one of Skyler's favorite things about the room.

I love these girls!  They will forever hold a special place in my heart.

The awesome coke machine.  They put root beer in there for Skyler and diet coke for mommy.  This is one of my favorite things!

We love Chuck E Cheese and Helen!  It was really neat that they came back to be apart of the reveal.

I like this picture with his Make-A-Wish shirt on.  He is just so handsome.

They put game chairs in there that were the perfect size for Sky.  They have speakers in them so he can hear the TV through the chairs. 

He has always wanted a pool table so he was really excited about this too.  This is so cute to me because his dad liked pool too.

And of course my brothers went straight to the arcade game.  As Skyler would say, that thing is sweet!

 This is his Wii and Xbox section.  The couch and chairs are perfect and I love that they hung pictures of Skyler all over the walls.  He thinks its so awesome that he has a bigger TV than me. They also put a race car in there with a spot for his controller so he can play mario kart in a race car. 

I love this booth.  When you are sitting there you really feel like you are eating out at a restaurant.  Great for Skyler because he loves to go out to eat but we hardly go anymore.  Now he has his own little restaurant space in his room and an oven for all his pizzas.

The kids love this stuff.  Its all prizes and things that you would get at Chuck E Cheese.  It has some really neat stuff in there.  They had so much fun looking through everything.

I like this picture of him playing with his cousin with their Chuck E Cheese hats on.

Our sweet balloon hats!

They also got him alot of comic books.  He has been really interested in these because he saw them on TV once but has never seen one in real life.  Im so glad they gave him these too.

These are all the board games they got him.  You should have seen the look on his face when he opened this up.  He was so happy!

They had popcorn all made for us from his new popcorn machine.

They also had this cute cake for him and sang Happy Wish Day to the tune of happy birthday. 

I love this as well.  They gave him a ton of goody bags to hand out to all of his friends when they come to play in his room with him.  The kids loved them and he is so excited to hand them out to all his friends.

Like I said, Im sure I missed something because there is just so much stuff in there.  The room is truly amazing and perfect in every way for Skyler.  I cannot express in words how deeply grateful I am to Make-A-Wish and our amazing wish granters.  They brought so much joy into a little boy's life that was in desperate need of it.  All he has wanted is to go to Chuck E Cheese.  He loves it there, but I cant take him.  So Im so grateful that Chuck E Cheese was able to come to him and give him a space that is just his.  A place where he can touch whatever he wants and not have to worry about germs.  We have already made such good memories in that room in only a couple days, and I know we are going to make so much more.  Not only was Skyler's wish granted, mine was too.  I get to see my son truly happy again!