To sum up, 2010 has been the WORST year of my life.  It pretty much has been a living nightmare.  However, I am hopeful that 2011 will bring a much smoother ride.  Instead of riding the scariest ride at the park, hopefully we can ride a couple kiddie rides instead.  And maybe even eat some cotton candy along the way.  (Haha that was supposed to be a metaphor)

HAPPY NEW YEAR!!!

PLANS FOR TODAY......

TWO LOVELY DOSED OF CHEMO

Here is one of the poisons.  Looks harmless right?  I wish!

Here is the other poison.  Its still hard for me to sit back and watch them put that horrible stuff into his body even though I know he wouldnt be able to live without it

BLOOD

A nice big bag of blood....does a body good!

DRESSING CHANGE

They have to change Skyler's dressing everyday where they took his spleen out.  He hates it.  This is a picture of it a couple weeks ago...yucky huh?

This is it today, much better.

This is Skyler when they were done cleaning it.  He always gets so happy when they say they are done.

AND OF COURSE HITTING BALLOONS WITH A LIGHT SABER!!

Last night I took Skyler out in the halls for a walk.  Along the way I looked into one of the rooms and saw a little girl with no hair.  She was looking really pale and weak as she tried walking across her room attached to an IV pole.  I also saw an older girl walk down the hall dragging her IV pole behind her, she was limping a little and looked like she was in pain with every step.  As she stood next to the wall to get her height and weight done, she took off her beanie and I saw her balding head.  An overwhelming feeling of sorrow came over me, I just felt so bad for these two.  It felt like a scene out a movie.  I have seen a couple of different shows with kids that have had cancer and it was so sad and horrible looking.  And then it hit me, Im wheeling my son in a wheelchair because its too painful for him to walk, Im dragging an IV pole because my son is attached to it, my son is pale, he is weak, he has no hair, my son has CANCER.  This isnt a scene from a movie, this is our reality.  Skyler is no different from these kids, they are going through the same things.  I know we have been here for what seems like forever and it should have sunk in already, but our world changed so quick and I guess I have been caught up in taking care of all his new needs that I havent really sat down and thought about it.  Cancer is such a scary word.  It only happens to other people right?  You never think that it will happen to you, let alone your child.  Your little innocent child.  Its hard looking around in all the rooms and seeing so many children suffering.  There are kids that have been here for so long and cancer is just an everyday word, and they now call this place home, and then there are kids who are just barely hearing those awful cancer words and are just starting their journey down this road. 

 Everyday now Skyler cries to go home.  He doesnt understand why he still has to be at the "hostible" and why he cant go home to Grandma and Grandpa's.  I hate that I have to tell him he still has to stay here.  His numbers are looking good though so thats hopeful.  His bili is down to 2.9.  Im so relieved.  He still is having high fevers though which is a big  reason why he is still here, but at least they have an explanation for them.  He still has those necrotic places in his liver where the fungus was, and until they are completely gone, which will take months, he will still have fevers.  So more than likely we will be here for another couple of months.  Im starting to get sick of being here just as much as Sky.  I have to admit its starting to wear on me, so I can only imagine how Skyler is feeling.  I wish that once we do get to go home then that will be the end of this but I know thats not true.  We still have three years left of this.


I do know that enduring through all these years of chemo will make it so we can have fun times like these again for many years to come........

We have had a very Merry Christmas this year.  Santa found his way to the hospital and delivered lots of fun presents.  My mom and dad and brother Ty came really early in the morning so they could be here when Sky woke up.  He usually is awake really early in the morning so they came at six, but when they came Skyler was still asleep and didnt want to wake up.  (The morphine and ativan that he got last night didnt help the situation any)  At first I tried awaking him up but with no success so we just let him sleep.  When he did finally decide to wake up he was wet so I changed his "hospital pants" and in the process I totally scratched his leg and made him bleed!  What a way to wake up on Christmas morning, having your mother injure you. Way to go Crystal.  Definitely not the way I imagined the morning going...oopsies!  But as soon as we sat him up and he saw that grandma, grandpa, and Ty Ty were there and that Santa came, he got happy.  It was so fun watching him open his presents and seeing the smile on his face.  He did get tired pretty fast and didnt want to open anymore presents, so we gave him a little break and I opened the rest for him.  After his little rest he started playing with grandpa and Ty and having fun with his toys.  He was laughing so much.  Im so glad that he was still able to enjoy Christmas morning even though it was in a hospital.  I dont care if we had to celebrate it in a cardboard box, Im just so grateful that we got to spend it together.  Im also so grateful that my parents and brother came up so early to celebrate it with us.  Skyler just loves them so much.  Last night he was more excited about seeing them in the morning than having Santa come.  Im also grateful for the nurse I had last night who was so nice and really good about being super quite so Sky wouldn't wake up and Santa could come.  Im also grateful for the nurse we have today.  She is so sweet and helped make this Christmas special.  Here are some pictures from last night and this morning....

Santa came!

Our awesome night nurse

Trying to wake Skyler up.  Look how peaceful he is sleeping

Opening presents

This is Skyler giving me the necklace he picked out all by himself.  Its a snowflake one and I LOVE it!!!

These are the laughs we were getting all morning.  Im in love with this boy!

Skyler's cool Super Skyler blanket my cousin gave him. He loves it.

Seeing whats in his stocking...

Playing with his blocks.  Look at that determination!

Opening another stocking from the staff.  Thanks PCMC

Still playing through the nurse assessing him and giving meds.

Happy boy!

MERRY CHRISTMAS EVERYONE!!!!

Pray for Jessica

Pray for Jessica

Just a few days before Christmas (Dec. 22nd I believe) the Schmitt family received some heart breaking news.   Their 4 year old little girl has stage 4 cancer that is pretty much "everywhere" in her little body.   She is in need of MANY prayers and hopefully our Heavenly Father can bless her and her family with a Christmas miracle. They are having a special fast for her this Sunday for all who would like to participate. It just breaks my heart to see her sweet little picture and know that just days ago she was probably telling her mom and dad what she wanted Santa to bring her.  Now she is here at Primary Children's Hospital and in need of a sweet miracle.   Her blog is jessicasmiracle.blogspot.com

 

 

Hearing the news that Skyler had cancer was horrible, even though the cure rate for his type of cancer is one of the highest.  I cant imagine being told that my child had stage four cancer, and just a few days before Christmas.  Please keep this family in your prayers, they need all the extra help they can get right now.

Yesterday morning was a little scary for me, but that night turned out amazing so I didnt want to take away from that but here it goes.  Skyler's bilirubin has been slowly going down everyday, it had gotten up to 16 (a normal number would be .5)  it had been going down though and the other day it was five.  Skyler woke up yesterday morning looking really yellow though, so they checked his bili and it had shot up to 12.  Thats such a big jump!  Normally it just creeps up and then creeps back down, but yesterday it shot up high and fast.  Needless to say everyone was worried so they took him down to do an ultrasound of his liver.  They were looking for some kind of blockage in the liver that would explain this.  They didnt find any blockage but they did see alot more of the little white spots.  They saw them last month too, but this time they saw ALOT more.  Not good.  They thought it could either be the Leukemia coming back or his fungus becoming more active.  Definitely not the news I was looking for.  I just couldnt believe this was happening, I dont know how I could handle another big setback and a trip back down to the PICU.  And worst of all, could his little body handle another big setback?  I was pretty much a nervous wreck waiting for the Oncologist to come talk to me about our options.  She told me that if it was the Leukemia in the liver then it must be a pretty resistant kind to the chemo and they would have to give him a stronger chemo which would just slam his body again.  And if it was the fungus then they would have to start him back on the antifungal medicine that is horrible for his liver.  This is the medicine that they think caused his liver disfunction in the first place.  Both of those options were such bad news!  I felt sick.  Toward the end of our conversation I kinda checked out mentally.  The room started spinning a litte and I felt like I might throw up right there.  She told me two tests needed to be done to see what we were dealing with, a bone marrow aspirate to check for cancer cells, and a CT scan to check for the fungus.  They didnt want to do the CT right away if they didnt have to because his kidneys are finally starting to work again and the contrast that they would have to use damages the kidneys, so they scheduled him for the bone marrow aspirate this morning to check for the cancer first. 

I woke up this morning really nervous, but to my great surprise his bili had gone down to 6 and he looked much better!  He eyes were alot less yellow.  We were all kinda shocked but in a good way.  They decided to hold off on the tests and see what his body does.  They still have no clue what made him jump up and down like that, but then again it seems like they have no clue why his body does alot of things.  Most of the things that have happened to him are just not normal for the type of cancer he has.  The rest of the day today he did pretty good.  He opened presents and played with a therapy dog.  He was smiling and laughing and took some really good naps.  A huge weight was lifted off my shoulders this morning.  His little body just continues to surprise us everyday.  Tomorrow morning we will check another bili and see what it is at.  Hopefully it has gone down some more instead of going up again.  So a few extra prayers tonight would be much appreciated. 

Here are some pictures from our good day.  Alot better than having to have a huge needle jabbed into his hip down into the bone!

 

Superman shirt for Super Skyler

He was able to have to the therapy dog come so he could pet and feed him.  I love these dogs, they make the kids so happy.

Out in the halls doin some wheelies with his dinosaur.  The dinosaur was doing a "wheelie" too!

Tonight I am humbled and full of gratitude.  I am so grateful for the many of you who have donated their money, for those who have sent a card, a present, dinner, words of encouragement, and the many prayers that have been said on our behalf.  I cant even begin to tell you how much these things mean to me.  Even in the midst of dealing with a living nightmare, we have received many blessings.  My eyes have been open to all the good that is in this world.  You make me want to be a better person.  I have learned so much about myself and about the person that I want to become.  We have been on the receiving lately of so much service, thoughtfulness, kindness and generosity.  For this I am truly grateful.  I cant tell you how many times I sat there and thought "How am I going to get through this?" and then someone comes or sends something to cheer me up.  I have seen so many beautiful smiles from Skyler because of you.  Thank you from the bottom of my heart for making this cancer journey bearable.

        Do you believe in miracles?  I do.  Who knew that within months Skyler could go from this.......

To this......

Skyler rode a bike today!  It was truly miraculous.  The physical therapist brought the bike up to him so he could get used to the idea and then maybe in the future when he got a little stronger he would want to ride it, but he told her that he wanted to ride it right then.  We were all surprised.  I thought that we would set him on the bike and then he would kind of freak out and want to get back into bed.  But no, he started pedaling and wanted to go out into the halls to do it.  So we took him out into the halls and he rode a bike.  It was pretty darn cool.  He got pretty tired about halfway down the hall so we finished off our adventure in the halls with me holding him.  That was the first time in months that I was able to hold him like that.  I got a flash back of us at home with me holding him like that and I started bawling, so there I was walking down the halls crying.  He couldnt see because his head was turned the other way, thank goodness.  I didnt want him to think I was sad.  The coolest thing was that the only thing he was attached too was his oxygen tank, so it really did feel normal.  I just received the BEST Christmas present today, and for that I am thankful.  Here are some more pics of our little adventure.  FYI I look a mess so just focus on the handsome little guy on the bike :)

(My dad is going to love this picture)

The Oncologist came in today and said "Can I talk to you outside for a minute?"  My heart sank.  When a doctor pulls you out of the room to talk you know its not good, I have had too many of those talks, but to my surprise it was a good talk.  She said she was thinking about Skyler and wanted to get him home for Christmas.  My reply was "What?! Are you kidding me? Home?! You cant be serious."  Haha you should have seen the look on my face.  She was actually very serious and really wanted to find a way to get Sky home for Christmas.  She said she could wait on his chemo this week and do it next week, we could come in once a day and get a platelet and blood transfusion, and she could send an oxygen tank home with us.  A million and a half things were going through my head when she was saying all this.  Will I have time to sanitize the whole house?  Will I be able to handle all his needs from home?  Would he get a new infection being home?  How will a wheelchair fit into the car or our house? Can I really leave the safety of the hospital setting and risk getting sicker and ending up in the PICU again?  Even the thought of going home right now scares me to death, so as much as I would have liked a Christmas at home I decided to stay here.  We would have had to get admitted again after Christmas anyway.  I know some of you are thinking "How could you pass this up?"  but I just couldnt risk it.  I need him to get stronger first and to not be dependant on oxygen.  I also couldnt stand the idea of holding off on his chemo for another week when we have gone so long without it.  I will sacrifice ANYTHING to get Skyler healthy again, even if that means spending the next couple of years in the hospital if it comes to that.  We will just have to make Christmas in the hospital as fun as Christmas at home.  Im just glad that we get to have a Christmas together.  Some people thought that he wouldnt even be here for Christmas, so to be able to spend it with him up on ICS is a miracle.  Im really grateful for the doctor for thinking of Skyler and having her willing to do all these things so he could be home though.  That was very sweet of her.

Overall Skyler is still improving.  Improving slowly, but still improving.  The levels that show how his kidneys are working are coming down.  This is so great and it has shocked the doctors.  They were expecting him to be dependant on dialysis for the rest of his life, but here he is going on a week now off dialysis and doing great.  Today he is a little more puffy and his weight has gone up a little, so they are going to slow down on the weening process of his diuretics that are helping him pee.  And hopefully since his numbers are going down his kidneys will start to work better and he wont have to be on diuretics at all.

His bili is still going down too.  This is a reflection of his liver function so Im so grateful that it is going down.  He is still yellow but not nearly as bad as he was.  They have to hold off on one of the chemo drugs that he is supposed to be getting because his bili is still too high, but hopefully it will keep going down so they can eventually give it to him.  It scares me that he isnt getting the chemo that he would normally get.  I would just hate to get all of his other problems better and then have his cancer come back.  That would be truly devastating.

They are taking his central line out that is behind his knee today.  Hooray!!  That means the only access he has left is his dialysis catheter, and since they can use that for all his meds they dont need the other line anymore.  So one less infection risk gone!  At one point he had 17 tubes going in him at once and now he will just have one (well he will still have his feeding tube)  this is amazing.  Im just so happy things are starting to look up.  I love this feeling of hope.  I love that I can actually picture him having a future and it may actually be possible now.  All odds were against him but yet he made it this far.  What a fighter he is! 

Skyler spirits are starting to coming up.  He seems to be happier and he is back to his cute, funny little self again.  Im loving seeing personality shine through.  Today we played catch with a beach ball for 45 min.  He was laughing and smiling the whole time.  It was pretty cool.  Its little moments like these that will be etched into my mind forever. 


         Hooray for no more of these dressing changings behind his knee!!  He hates getting this one cleaned.

Im too tired to post something long, but I do want to say thank you to those who have sent something to Skyler.  Whether it be a card, a toy, a picture or even a friendly hello.  It really does make his day and put a smile on his face.  Thank you!

Skyler is still not sleeping.  He is awake all night long and all day long.  Its so strange, we just dont know whats going on with him right now.  They tried a new sleeping pill last night and it didnt do anything but make him an emotional wreck.  He didnt get sleepy but he did get really mad and sad and frustrated.  It was a hard night to say the least.   I had the nurse read me the side effects of the drug because he was having some sort of reaction to it, and guess what was on the list....insomnia.  Are you kidding me?!  Haha what a fabulous sleeping pill.  Lets just say he will never get that medicine again.
This past week and a half Skylers new best friend has been his pink barf bucket.  He has just been so sick and constantly throwing up. He is also still spiking fevers as high as 105 degrees F at least twice a day.  So he is just pretty much miserable all the time.  He does put up a good front of being ok though even though I know he isnt feeling good.  He has learned that if he says he doesnt feel good then most likely the nurse will come in with medicine and even sometimes a poke.  Poor kiddo.  He is still talking and being pretty darn cute though.  He keeps making everybody laugh with his little comments and please and thank yous.

He got another platelet and blood transfusion today.  The matched platelets have helped in bringing his counts up higher right after he gets transfused though, so he has been getting them every other day now instead of everyday which is an improvement.  One day his counts jumped up to over 200!  Holy cow thats super high for him.  It was funny because all the doctors and nurses couldnt believe that that was actually HIS platelet count.  Of course the next day it dropped down to 20, but still thats great that it went up that high.

Im loving our new "home"  I love looking around and seeing other cute little bald heads and seeing nurses dressed up in their chemo attire.  I never thought those things would ever give me joy, but its so much better than being in a place where its normal to have a kid in the bed next to you not make it and pretend to go about your normal business while you listen to mourning cries from the family.  Up here it feels more like a home now.  I know last time we were up here it was such a hard transition for me, but this time its different, I was so ready to be up here.  There is an actual bathroom in our room, an wait for it....a shower also!  Its so much more quiet and calm, and at night the nurses actually make it a priority to be as quiet as possible to let you sleep.
When we first got up here Skyler started crying because he wanted to go back to his old room.  This change was hard for him, he just got too used to being downstairs that this move to a different place made him scared.  It took him a little bit but eventually he started to like his new room.  Last night at about 2 in the morning he wanted to get up and sit on the side of the bed, he started talking and laughing with me like we used to.  For about twenty min. Skyler was back to his normal self.  It was amazing.  His speech was clear as day, he remembered things from a long time ago, and we talked about being in the hospital and why we are here and about Christmas and about how fun it will be when we get to go home.  We actually had a normal real conversation that I havent had with him since we got here.  I couldnt stop smiling the whole time I was talking to him so he probably thought I looked like a dork, but it was just such a little miracle.  I will always remember those twenty minutes!
Today has been a good day too.  We were able to take his NG tube out, which is a big tube that goes into his nose and down into his stomach.  It suctions out everything that goes into his tummy, but he has been doing so well that they decided to pull it today.   They also pulled an IV out that was in his hand, so he is now free from two more tubes.  He said "Ahh that feels alot better" when they took them out.  It was really cute.
He has been really talkative today and is making everybody laugh.  Most of the nurses have never heard him talk before either because he has been so sick or intubated, so it has been fun for everyone to hear his voice and see his personality.  Also, his counts were up high enough today so we were able to go out in the halls.  He loved it, he didnt want to go back into his room.  When we were out there he said "Hey this is the Children's Hostible (hospital)"  It was funny because he just realized where he was this whole time.  Last night he also asked me "So is this our new home?"  I like that he is so aware of things now.  Also when we got back to our room he said he wanted to stand up so he could look around at things.  He has never asked to stand up before because it hurts him so bad, so him asking to is a big deal for him.   I said yes, so I got him out of his chair and helped him try to stand.  Of course he couldnt bear any weight because he hasnt stood for 4 months now and has no muscle whats so ever in his little legs, and he cried in pain the whole time but the fact that he tried was incredible.  Way to go Sky! 

Here are some pictures of our adventure in the halls today....

                                     Skyler and Grandpa looking at the toys in the playroom. 

Out in the halls by our room.  Grandpa was being silly, he always knows how to make Sky laugh

Looking out at the world for the first time in a long time, he loved it!

One of the not so great things that happened today was that he threw up a TON of blood this morning.  It scared me to death!  We had the doc come in and check him and she said the most likely cause was that because he has been throwing up so much lately and because his platelets were so low, it caused a tear in his belly.  They gave him some medicine that would coat his tummy and the next time he threw up there wasnt blood in it, so it looks liked it worked.  Thank goodness.  I was thinking "Here we go again down to the PICU"  but we are still here and the rest of the day turned out great.