Today Skyler is going back on Chemo.  They had to stop his chemo when he got this infection because without any immune system he wouldn't be able to fight off this infection.  They gave him medicine to make his white count come back quicker. But now his white count is back and his numbers are high, so that makes the oncology docs think that he may be going down that road of his cancer coming back.  To stop that they have to start chemo again.  Its a really low dose, kind of like the dose they give in the "maintenance" phase.  So the plan is to keep the cancer from coming back but not give him the full dose that will wipe out his immune system completely again. Thats the "plan" but for some reason Skyler seems to have his own "plan" in mind.  Its funny because the docs and nurses keep saying that skyler is special and marches to the beat of his own drum.  One doc said that he definitely didnt read the manuel on how to get sick.  He has so many things going on with him that they never see, so they sum to it up to it just Skyler being Skyler. Im not sure how to take that, but I do know that he is the toughest kid I know and that he is a fighter!!

This is one of the signs they have to hang on his door so everyone knows he is getting Chemo.  They have to take alot of special procautions in handling how they do things with him and the things that touch him within 48 hours of giving it.

This is a picture of the dreaded Chemo.  We have a love hate relationship.  On one hand this is the medicine that killed all of his nasty cancer cells, but it also hit his body so hard that now he is in the ICU with five organs failing.

I call Skyler my Superhero.  He loves superheros and is definitely my superhero.  He may not be able to lift cars and fight bad guys in the sense you see on TV.  But he is fighting his own battle right now, fighting off all those "bad guys" that are invading his body and making him so sick.  So Beau my favorite nurse (the one you see in the pic above) told the child life specialists and they came back with these cute pictures and put them on the ceiling above his bed.  So when he does wake up this is what he will see.  I thought is was so cute, and it made me so happy they did that :)

Skyler had to go down to get another CT scan today.  They wanted to be able to check where the fungus has spread to and see if there were any other new infections or pockets of infections they havent been able to get to.  Usually when you are in the PICU and have to have tests done, they come up to you instead of moving the patient to other floors. They even do surgical procedures in here.  Its crazy to be sitting in the room with Skyler and have everyone in here all gowned up like in the O.R. and Skyler all covered up with the blue sterile towels and watch them cut into and sew up my boy in front of me!  But the CT scan machine is sooo huge that they cant bring that up so we had to go down to it.  I guess its a BIG deal transporting such a critically ill patient like Skyler.  It took an hour just to prep everything to go down there.  They packed his bed full of all the supplies needed and had to bring all the machines that he is on down with him.  It took a doctor, a Respiratory Therapist, a tech, and four nurses to transport him and stay with him. It was quite the process transferring him from his bed to the CT bed because of all the cords and tubes he has, and it took everyone helping to move him over.  I think it hit me more than ever watchin this process and seeing what a big deal this was just how sick Skyler really is. They keep saying "critically ill" and I hate it.  The good news though is that they didnt see anything new from the scan, so thats great! No news is good news at this point.  I was terrified that the infection had gone to his brain but that hasnt happened yet so I can breathe a little easier right now.

                       This pic shows them moving Sky out of his room.

This one you cant see very well, but its everyone crowding in the elevator together.  All the staff and machines made for quite the tight squeeze!  It was kinda funny and sad at the same time.

                 I love you Skyler.  You did so good today.  You are my little superhero!!!

Stolen Camera

And this is what happens when I leave the room for a minute and also leave my camera out....

Oh dear Dad, please dont touch anything!!

                                         And yes, you are his favorite nurse Beau :)

Sky developed holes in both sides of his lungs today so they had to put drains in his chest to drain the air that's leaking into his lungs. TUBE COUNT: 1 breathing tube, 1 feeding tube and 1 suction tube in his mouth, 2 dialysis catheters in his neck, 2 chest tubes, 1 belly tube, 1 foley catheter, 4 IVs, and 1 PICC line in his arm = 14 tubes into my son.


----Crystal

These are all the machines that are attached to Skyler.  The pole on the left is full of all the medications that are being pumped into him.  The screen on the top is what I sit and watch all day long to see how he is doing, it shows his vitals and O2 status.  The machine next to that is his ventilator that is breathing for him right now.  And that big machine is the dialysis machine, and yes he is on that again.  (Its called James Bond)  So this is a scary and loud room to be in right now.

The Child Life people came in and made a poster all about Skyler so the staff can get to know him a little more.  The nurses also wanted me to bring in a picture of Skyler before he got sick so they could see what he looked like.  With all the extra fluid on him and with so many organs that arent working well right now (5 to be exact) he looks a lot different.  He looks about ten to me.  So anyway my sweet sisters went and made that cute poster of his pictures, and my cutie nieces and nephew made that other poster for him.  They drew such cute pictures :)  

Skyler I love you so much, and Im so proud of you!  You are such a fighter!  I love you with all of my heart!!!!!!!! xoxoxoxox

Thank you so much for this post Crystal you are an amazing Mother!!  We love you and Skyler so much!

Skyler had to be intubated today.  The Dr's don't know why he is not getting enough oxygen right now.  His chest X-Ray looked a little better although his kidneys and liver are getting a little worse.  Stay strong Skyler!  Keep fighting, you're the bravest kid I know!!  You WILL get through this!

An update from Crystal via Facebook...
So they are now sticking a drain into his belly to try and drain out all the extra fluid. His belly is HUGE so I hope this helps, but he will be awake during it :( Man this crap is hard to watch!-- She also said he didn't even flinch!!  What a trooper!

Skyler is still in the ICU and depending on the moment doing a little better.  He is on and off the Bipap (the mask over his face forcing a lot of air in his lungs and pulling it back out of his lungs). He has been fighting so hard and so they have been able to put him on just high flow nasal oxygen, but today he is back on the Bipap.  He had a very hard time breathing last night.  This morning his lung almost collapsed, but they were able to catch this before it happened and get his lungs functioning better. His chest X-Ray was looking better on friday.  His X-Ray's are supposed to be all black but Skyler's are mostly white (due to the infection and the pneumonia) with a few black spots.  They remained like that until today and now there is more white with very little black spots.  His White Blood Cell Count is coming up (YAY) and that is making him very sick.  His blood gases are also off so that is making him pretty Lethargic. He is on lots of morphine and sedated to make him more comfortable. He will probably stay like this for a few days.  The Dr's say that they expected this and that he has to get worse before he will start getting better.

Here is Skyler on the Bipap machine.  His skin on his upper body is looking so much better, although he is bruising a lot on his stomach.  His stomach has swollen up a lot because he is retaining the fluid again.

Skyler's form of comfort while in the hospital has been to put his fingers up by his mouth.  With this new breathing machine he is unable to do that.  It's also really hard to understand what he is saying while it is on.

Here is what it looks like walking into his room.  It's a scary thing to see with him hooked up to the machines but thank goodness for this technology to help him get better.

Not only is Crystal lucky to have such an amazing, stong little boy, Skyler is very lucky to have Crystal for a mother.  She has been by his side constantly for the past 5 weeks caring for his every need.  These two are with out a doubt a match made in Heaven!

Aunt Brittany and Uncle Todd saying hi to Sky.

Skyler gets uncomfortable and needs to be rotated throughout the day and night.  Though now they have to be extremely careful of his lung so it wont collapse.

Crystal's mom was able to spend the night in Skyler's room allowing Crystal to reserve this room and sleep on a bed for the first time in a month. 

Skyler you are doing an AMAZING job!!  Keep up the good work and fight fight fight!!  We all love you more than you know and are here supporting you!! 

Skyler went to the ICU yesterday due to having a high fever, low blood pressure and high heart rate tuesday night.  In the ICU he started having problems breathing but the Dr's were able to stablize his breathing and he seemed to be doing a little better.  This morning my Dad called to inform me that Skyler now has pneumonia.  If they are unalbe to get his breathing under control again they are going to have to intubate him.  Please please please keep Skyler in your thoughts and prayers as well as his Mom.  Stay strong Skyler, this is just another bump in this rocky road that you WILL get over!!  We love you!!

BALD IS BEAUTIFUL!!!

For a few days now Skyler has been sportin a mohawk.  Now he is bald and beautiful...well....handsome as Skyler would want me to say!  I just can't get over how cute this kid is!

Here is a picture from Crystal showing how easily his hair just came out and how much.  This will be a lot more comfortable for Sky to not have hair getting stuck all over him.

Here are pictures from Crystal's cousin Lindsey of Skyler and Emma.  Skyler was very excited to have Emma there with him and was looking at her and wanted her to sit by him and have fun.  Lindsey mentioned that while they were having fun Skyler did not like that pictures were being taken of him and got a little upset.  But at least you can see that on Saturday he was sitting up and interacting with Emma.

Say Cheese!

Skyler went in for an MRI today and they found that the funal infection has not reached his brain or his eyes!  That's such good news!  They are now going to run more tests and we'll have a better idea of what's going to be happening soon.  Way to go Sky Dude!! 

Yesterday Skyler went in for another surgery to try and remove the fungal infection in his sinuses.  We were told that they were unable to remove all of the infection because there was just too much and removing it would mean that it could leave his face disfigured.  So as of right now the fungal infection is a lot more severe than the Leukemia and they are taking him off of Chemo to try and build up his White Blood cell count and place him on medications to try and kill the fungus.  The Dr's are waiting to here the results from pathology to decide what type of action they will take.  This is an extremely hard time for Crystal and all of their family.  Please keep this little family in your prayers!

Skyler just wanted Mommy to be with him and hold him.  So precious!

Skyler has bed sores from laying on his back for over 3 weeks so he now has to lay on his sides and rotate every couple of hours.  He gets lots of help and support to help him roll over in his bed.  Skyler loves it when Mommy holds him in her arms!

We love you so much Skyler and Crystal!!  You are always in our hearts and prayers!

Skyler is doing pretty good today.  He had to go in for his 8th surgery in a month yesterday.  They found a fungal infection in his sinuses so they had to go in and remove his septum and clear out the sinuses behind his eyes.  This kid is such a trooper.  He had surgery yesterday and is sitting up coloring like nothing is wrong today.  He also was able to take 6 steps today!!!  That's huge!!  Yay Skyler you're so amazing!

Here is a picture Grandma Kathy wanted to share with everyone.  He is such a handsome guy!

He may be losing his hair but he's still stylish!

 Crystal sent me this picture from her phone and wanted to share that Skyler has started losing patches of his hair, but still has his stylish do!  He is such a cutie and with or without hair I might say this little boy is a STUD!!!!

Skyler's uncle Mckay made this video for Skyler.  It is so sweet!!  We love you Skyler!


http://www.youtube.com/watch?v=z_BJyEj2aZY

This past week has been both good and bad for Skyler.  At the beginning of the week he was very sick.  They found a yeast infection in his central line and scheduled another surgery to replace it.  During the surgery they discovered Skyler had blood clots around his heart.  In order to get rid of the blood clots they couldn't put the central line back in his heart.  They had to leave his wound open and put some special dressing over it to soak up the clots.  His levels were extremely low and he was in a lot of pain and just so sick.  Yesterday he was actually doing pretty well.  He was awake and alert and responding and answering our questions.  He even felt well enough to go for a wagon ride around the halls.  He has started losing his hair but still wears such cute mohawks.  Today he felt well enough to have a bath in the bath tub.  Since they are still unable to put the central line back in, he has to be poked two times a day which is hard on him.  The IV team came in today to issue the Chemo treatment and had to put a special light all over his hands and feet trying to find a good enough vein to put the IV.  They were finally able to just take out his IV he had in and put a new one in it's place.  He was so brave for this he didn't even whimper when they poked him!! 

Here is cousin Kayson pulling Skyler while the nurse is trying to get him hooked up to his oxygen machine. 

On the walk Sky really wanted to stop and get the Lego Batman nintendo game so he could go back to his room and play it.

Kayson loved pulling Skyler around the halls and Sky was having so much fun!  It was so nice for him to be able to get out of his room for a few minutes.

Kayson giving Skyler loves, although Sky was a little worried about him getting too close.

If anyone has pictures they have taken of Skyler they would like to have shown on his blog please email them to me at brittanylarson7@yahoo.com.  We would love to share your expierences you have been having with Skyler as well.

I went up and saw Skyler today and he is just not feeling well at all.  He had an extremely hard night last night and is having a rough day today.  He is in extreme pain and is on Morphine, Benadryl and Tylenol and is still hurting very bad.  He had to have Dialysis again today and was so tired.  He lost a lot of the swelling over the past few days but is starting to swell up again.  Skyler just looks completely worn out, you can just see it in his eyes and the way he looks at you.  It just breaks my heart to see him in so much pain. 
     Crystal is such an amazing mother!!!  She has been there with him for over two weeks now and is gung ho helping him with whatever he wants and needs.  She has been through MANY sleepless nights and days watching her everything suffer so much wanting so desperately to take this away from him!  Skyler is so lucky to have you Crystal!!!  You are more amazing than words can describe!!!  We love you and we love Skyler and we are all behind you and here for both of you!!!