Monday, February 28, 2011

So I know I just posted but I wanted to add this mostly so I dont ever forget it.  I have been seeing other cancer buddies go on their Make-A-Wish trips, so out of curiosity I asked Skyler if he could do anything or go anywhere in the world that would make him happy what would it be.  He replied "To not be sick anymore."  Wow, I had to leave the room because I couldnt hold the tears back.  That one broke my heart. 
The past couple of days Skyler has not been feeling very well. At times he seems pale with dark circles under his eyes. He has also been weaker. He started walking all by himself and was getting around really well but the past couple of days I have had to help him or let him use his walker. His temp also went up to 99.8 one night, the highest it has been since we have been home.  I was almost positive he was going to spike a fever landing him inpatient again. I was already planning in my head what I needed to pack, but by morning he was back down to normal. Thank goodness, Im just getting too used to being at home again I don’t want to have to go back to the hospital. Im not quite sure what that was all about but it has me worried. He also has been having extreme acid reflux or heartburn that’s been miserable for him. The medicine our oncologist prescribed for has to be taken orally instead of through his feeding tube and he wont take it because it tastes nasty and when he did try he just threw it back up. And the tums he is taking doesn’t touch it. It gets a lot worse when he lays down, so nights have been really hard for us. He wakes up at least every hour. He also woke up with a big headache today. I hope all of this passes soon and that its just side effects from chemo last week. I just pray he isn’t getting some sort of new infection.
We go back to clinic on Friday. He has to be sedated for a bone marrow aspirate and then back up for some more chemo. When I told him he was going to have to get a back poke again this week he said “That’s ok mom because I like the sleeping medicine and Im super strong so it wont hurt me” He is the bravest person I know. Also he was rubbing his central line yesterday like it was hurting and then asked me “When you were young and sick did your central line hurt too?” I hate the fact that he thinks this is a normal thing that everyone experiences when they are little. I hate that this is his new “normal” I wish he could just run around and play with his friends, and go to preschool. He loves his preschool class and teacher and is sad he cant go this year. I wish I could take him fun places like we used to instead of being couped up in the house all day. Our getting out now is going for rides in the car, but our last two rides he threw up so he doesn’t even like to do that anymore. I know this isn’t going to last forever and I am extremely grateful that we are able to be home, but its just hard sometimes.

One of the things that puts a huge smile on my face and makes all the bad go away, is when Skyler makes me surprises. These were my surprises he made for me yesterday….

                                                                     A beautiful flower

An awesome rainbow and heart

Thank you Skyler.  I love you more than you will ever know.  You are my everything and I am so lucky to be your mother.

Sunday, February 27, 2011

On July 9th CureSearch is holding a walk to raise awareness and money for childhood cancer.  We need a cure for our children.  Did you know that childhood cancer is one of the lowest funded cancers?  Thats just not right.  Curesearch funds the lifesaving research of the Children's Oncology Group.  Im so excited that they are coming to Salt Lake so I can take part in this.  Im starting a team in honor of Skyler.  Team Skyler.  My goal is to get at least 20 people to walk with me and to raise at least $1,000.  If you would like to join you can go to my team page to register, or if you just want to donate you can also go to my team page and make a donation in Skyler's honor.
Thank you so much.  Again, Im really excited about this and really want to raise a good amount to help fund this research. Cancer is the #1 cause of death from disease in children. Every day, 35 children or nearly 2 classrooms are diagnosed with cancer, 7 of these children will not survive. 3 out of 5 children who survive cancer suffer devastating long-term side effects.  Its really scary to know that once we are done with cancer treatments, Skyler still may suffer horrible long-term side effects.  The only way to find new drugs that dont cause such nasty side effects is through research.  Thank you for your help and GO TEAM SKYLER!


Friday, February 25, 2011

Skyler got his beads of courage today.  Beads of Courage is an organization that sends kids beads for every procedure or hard thing that they have to do while they have been sick.  They get a different color and shape of bead for each different thing they have had to do.  So its kind of like a reward for going through something hard and then they can show off everything they have done by showing people their beads.  Most children's hospitals take part in this but Primary Children's doesn't, so I was able to get in contact with them through my brother in law.  I gave them a count of all the things he has had to do and they sent me all the beads today.  Skyler thought they were pretty cool and kept asking me what that certain color meant.  It was actually good for us because it gave us a chance to talk about all the things he has done.  He doesn't remember alot of them because he was sedated for so long but he seemed really curious about everything and wanted to know all the different things they did to him while he was sleeping.  I have always been one to sit down and talk with him about things like this.  I feel like when we talk things through and he knows what is going on and what to expect and why then he does better with it.  When he has to get a certain procedure done we always talk about it first.  I explain to him what they are going to do and why (in a way a four year old with understand of course)

 Here is a list of things that Skyler has had to do so far:
6      Bone marrow aspirates
7      Lumbar Punctures
3      Biopsies
56    Chemo treatments
3      Immunizations
12    Clinic visits
136  Blood transfusions
213  Dressing Changes
2      ER visits
1      Hair loss
172  Antibiotic Infusions
145  Days spent in the hospital
5      Times in Isolation
139  Days with a fever
64    Days Neutropenic (No Immune System)
11    Line placements
34    Times taking all meds by mouth
34    Days of relearning how to walk again with a walker
123  Pokes
78    Days on dialysis
36    Days of TPN
11    Surgeries
9      CT scans
2      MRI's
4      EKG
9      ECHO
132  X-Rays
6      NG and NJ placements
6      Foleys
3      Transfers to the PICU
142  PT, OT, and RT visits

He was able to make five necklaces.  He still has more beads but we ran out of string.  Also the bigger beads you see on there represent 100 of that certain thing.  As you can see he has had to do quite a bit of not so fun things in his short little life.

Here is a link to Skyler talking about his beads:


                  (Correction: So I guess they do do beads of courage at Primarys...silly me)

Thursday, February 24, 2011

I am so grateful for my dad and brothers for being such a great example for Skyler.  Since he doesnt have his daddy here with him, my dad and brothers have been that male figure in his life.  Im especially grateful for my brother Ty these past couple of weeks.  He will take the time to come play DS and the Wii with Sky.  Skyler LOVES it.  He just lights up when Ty is around and laughs and has so much fun.  They have such a special relationship.  Thank you Ty!

My mom's friend made this amazing tepee for Skyler.  Isnt it awesome?  Skyler loves it and loves the fact that its a Scooby-Doo one.  He calls it his secret hide-out.

After a couple hours of playing he fell asleep in it.  He was wiped out and slept for almost four hours.  Those stuffed animals in there with him are his secret hide-out buddies.

Wednesday, February 23, 2011

Skyler made counts so we had clinic yesterday.  In this phase his counts have to be high enough to be able to get chemo, and if they arent then we have to wait until they come back up.  So instead of drawing labs when we get to clinic and then risk being sent home if we didnt make counts, we had a home health nurse come the day before to draw his labs.  That way they can call me back with the results later that day.  I was hesitant to do it this way at first because when they had come before to help change Skyler's wound vac they just seemed unsanitary.  I work so hard to keep everything clean so I hate having people come in especially when I dont know what kind of patient they were just helping.  For all I know they just saw someone who was sick and coughing all over their scrubs.  Ever since his diagnosis I think about these kinds of things all the time.  Yup, I am now a germ a phobe.  Anyway, I agreed to have them come draw labs the day before because it would make our clinic visit alot faster because they could have the chemo ready if they already knew what his counts were.  Lets just say I totally regret this decision now.  It was a horrible experience.  For starters I hate letting anybody else touch Skyler's line.  Since we have been home I do everything for him.  I change the dressing, I give his IV anitfungal through the line, I change the caps and I also hep lock his line everyday.  So Im used to doing it a certain way and I take the time to do everything just right.  Even at clinic I get really tense when I have to let the nurse do everything.  But this home nurse came in and didnt even clean the line first before drawing the blood.  Even when I asked her to she only swiped it once and seemed put out that I had asked her to do that.  She also couldnt get any blood return so she had to change the caps and hardly cleaned anything.  She was also touching everything in her dirty bag with her gloves on and then still was touching his line with them.  I was so angry that I told her I would finish the rest.  This is supposed to be a "clean" procedure and it was anything but.  As soon as she left I started crying.  I try so hard to keep Skyler from getting any other infections, so it makes me so mad that someone would come in and put him at risk like that.  From now on I will be drawing his labs and I'll just hand over the blood when they come so they can take it to the lab.  So frustrating!  At least one good thing that came from this though, is that I realized that the nurses at clinic are actually good at what they do (At least better than this lady anyway)  So now I feel I can relax a little more when Im there.

At clinic we got a new nurse that we havent had before and I loved him.  He knew what he was doing and I felt really comfortable with him so it made our visit go alot smoother today.  Plus having our chemo already ordered and up from the pharmacy was great.  Since all of Skyler's counts looked good, they gave him the full dose of Vincristine and upped his Methotrexate dose again.  It feels good that he was able to actually receive a normal dose of chemo, but also a little scary because I dont know how his body will tolerate it.  He has done really well so far so Im hopeful that he will do ok.

I havent talked about his pressure sore on his bum for awhile but its actually closed.  Yay!  Before it closed though it was still tunneling up a little. (So there was still an opening under the skin)  I was having to put some medicine that kind of looked like felt up into it to keep it so it wouldnt close completely while it was still tunneling because that would cause an open little pocket that could get infected.  It was still tunneling a couple days before it closed so I just dont know if the tunnel closed as well or if its still open alittle under the skin.  The only way to know is if it gets infected, so that has me worried.  Also Skyler was in a lot of pain with it last night, so I ended up having to give him his Oxycodone to help.  That was worrisome also but it didnt look red or inflamed so Im hoping it was just because he sat on it too long or something like that.

Overall though Skyler is doing amazing.  I still look at him and just cant believe how good he looks.  He has a lot of energy, he is eating a little more, he is laughing and playing and walking more.  I even gave him a little haircut today because his hair is still growing like crazy.  It has a different feel to it though.  Its really soft and fuzzy like baby hair.  Its going to fall out again with this next phase of chemo but for now its so great seeing him with hair again.
Prayers are answered and miracles do happen.  Thank you all for your love, support and prayers.  It makes this so much easier knowing that Im not alone.
      Skyler wanted me to put this on the blog so everyone could see his new Mario sheets. He loves Mario.

Saturday, February 19, 2011

Ok so I know I already posted today but I just had to add this.  Skyler walked for the first time today without holding my hand!  You can go here to watch it:

Also I entered Skyler into a cutest kid contest, so if you want to vote for this little cutie go to the link below.  You must first "like" this page and then go to Skyler's picture and then "like" his picture.  Its the one of him with his scooby jammies on with his walker.  Thanks everyone!!! 
Skyler has been pretty sick this week.  The PEG shots he got on Monday have made him really nauseous and he has been throwing up at least a couple times a day.  Other than that though he has been doing so well.  At clinic our oncologist said he couldnt even feel his liver, its actually a normal size now.  Before, his liver went all the way down to his pelvic bone.  It was so big that after they took his spleen out it basically spread out and took up his whole belly.  When we first got home I had to buy pants that were a couple sizes bigger than he normally wears and then also cut the sides to be able to fit around his belly.  Now its getting so small, it almost looks like a normal belly.  I had to go buy all new pants because the ones I cut kept falling down whenever he would stand up.  He just looks so good.  His hair is also growing in like crazy.  He is no longer a little baldie.  If it werent for the feeding tube in his nose you wouldnt even be able to tell that anything is wrong with him.  Definitely a miracle.  Its hard to believe that just a couple months ago he was in the PICU literally fighting for his life.

Skyler loves to do crafts, so I went and got a bunch of crafty things we could do this week.  Also a friend brought Skyler over some supplies to make his own music box.  He got his own little hammer and goggles and apron (well I dont really know what its called so we'll call it a man apron).  He had so much fun putting it together.  Here is my little own handy man.....

Isnt he a handsome little handy man?

He was hammering those nails in pretty hard.  As you can see grandpa was a little scared he might lose one of his fingers.

One of the crafts he did was make his own hat.  He kept saying "This is pretty funky!"

Meet "platehead" another one of Skyler's crafts.  Oh and in case you were wondering those circles under his mouth are eyes...Skyler says he is supposed to be a scary monster named platehead.

He also had a walker race with Grandma Kathy.  He won!

I just had to add his picture because he actually ate half of a sandwich today without throwing up.  This is the most he has eaten at once in five months.  Yay!

Friday, February 18, 2011

I just want to start off saying that I HATE CANCER!  It just seems like these past few weeks I have heard of too many little ones dying from this horrible disease.  Each time I learn about another little innocent child who has lost their battle with cancer its like a giant kick in the gut.  It literally makes me sick. I cant just hear about it and say "Thats so sad" and then go about my day like nothing has happened anymore.  Its so personal to me now and I just sit here and ache for those families and for another life taken.  This last boy I heard about kind of did a number on me because he reminded me too much of Skyler.  Their stories are just too similar.  I know we have been so blessed, Skyler is doing amazing right now but its so scary not knowing how all of this is going to turn out.  We still have three years left of treatment and then a life time full of worrying about that dreaded "R" word.  Relapse.  I will never again just think "Oh he just has a cold, or he's just achy from a little bug"  No, in the back of my mind I will always be thinking "Is this something more? Is it back?"  Life will never be the same, and I fear I will always have this crazy cancer parent mind.
I have, however, learned just how precious life is.  I really am so grateful for every minute I get to spend with Skyler.  Even though I am so tired alot of the time and would just love to lay down and sleep, I think back to those awful months when I prayed with everything in me for just one more chance to play with Sky again and it quickly puts everything back into perspective.  I get my second wind and go have fun with my son.  Thats another thing I have learned, to have fun.  I take the time now to actually play with him, laugh with him, and really have fun with him.  Not only is he my son, he is also my best friend.
This last little while has been so hard on me mentally and emotionally.  The reality and devastation of cancer is just so depressing.  But I can also say that I have received more blessings in these past five and a half months than I ever have before.  I put this quote on my wall a couple years ago and I think its so appropriate now.  "Life is not about weathering the storm, it's about learning to dance in the rain." 

Monday, February 14, 2011

Happy Valentine's Day!  This one was sure special for me.  First of all because I got to spend it with the love of my life, and second he made my day by waking up to beautiful long stemmed roses and a scooby doo game.  What a sweetheart!

And what did I give him for Valentines Day?......Oh just a couple of lovely shots of chemo in the legs.  (But not by choice)  Before that though I had his Valentines waiting for him when he woke up.

One of the only things he will eat besides Cutler's pasta is popcorn, so I got him an old fashioned popcorn maker like you see in the movie theaters.  Now we can have movie night the right way.
Then we were off to clinic.  They didnt draw any labs today so Im not sure what his counts are but Im assuming they are still pretty good because they were high on Thursday.  He did get the PEG shots in both legs though.  He was so brave up until two people in blue chemo gowns came up to him both carrying needles in their hands.  He then started kicking and screaming bloody murder, poor thing.  They were able to get it done pretty quick though and he was able to settle down really quickly when they were done.  One great thing that happened today was that he was able to walk all the way from one room back to the treatment room with just holding one of my hands.  He did amazing and about half way through he was hardly putting any weight on my hand.  One thing about Skyler is that if he puts in his mind that he is going to do something he DOES it.  I could just see the determination in his eyes and hear it in his little grunts.  It was so cute.  Im so proud of him.  When he were done Grandma Kathy met us to give Skyler a valentine.  Skyler told her that he wanted to give me flowers, so she got him flowers to give to me also.  I definitely got spoiled today.

Everytime Skyler gets a balloon he always tells me he wants to send it up to daddy in heaven, so Grandma Kathy brought some balloons so he could send them up to daddy for Valentines.

When we got home we made some yummy cookies.  Skyler LOVES to cook (definitely didnt get that from me)  He did everything all by himself, I just told him what to put in and he did it all.  He even frosted and decorated them all my himself.  Didnt they turn out great?  Good job Sky!

After that we had his cousins come over for a little Valentines party.  We had pizza and played games.  I must admit, it was pretty hard for me at first just because it has been so long since he has been around kids but it was so worth it.  He was laughing and smiling the whole time.  He had a blast.  It made my heart so happy seeing how happy he was.  It has been way too long since he has been able to just be a kid and have fun.  His counts are going to start dropping though with this chemo so he wont be able to have anyone over, so Im just grateful that they were high enough today so he could have a fun Valentines at home.  He sure deserves it.

Thursday, February 10, 2011

Skyler did really well at clinic today.  All of his counts looked great including his bili.  A couple of the liver function numbers went up a little but it wasnt enough to be concerning.  So this meant that they were able to give both of the chemos, Vincristine and Methotrexate, together today.  They also upped the doses on both of them.  Skyler is officially back on the normal road map now.  The phase he is in is called Interim Maintenance.  If his counts are good and his liver function stays ok then they will be upping the dose of Methotrexate every ten days.  I really hope he does well in this phase and that his body tolerates it.  One of the side effects of the Methotrexate is Mucositis.  These are horrible mouth sores that can also go down your entire GI tract and out your rectum.  I pray that he doesnt get this especially now that he is starting to eat a little more.  He is still on feeds, but is off of them eight hours every day.  This weekend we are actually going to try having the feeds on only at night when he is sleeping.  They just want to see if it will make him eat more.  I hope it does because that would be so nice not having him hooked up to that pole most of the day.

On Monday Skyler will go in and get his PEG shot.  This is a shot of chemo into his thigh.  It is a VERY painful one so Im so sad that he has to do this on Valentines Day.  I just hope it doesnt make him miserable for the rest of the day because he really has been looking forward to this holiday especially because its our first one home in awhile.  The last four holidays were spent in the hospital.  At least we are able to go home afterwards for this one, and Im going to try my darnedest to make this one special for him.

Skyler has just been so fun to be around.  He has this light in his eyes that just shines through that makes me so happy.  When I get down I just have to take one look at him and he lifts me back up.  His little laugh is so contagious.  You cant help but smile and laugh when he does.  I am so grateful for him.  There arent words to express my love for this sweet little boy.  Im am blessed to be able to share my life with him.

This is one of the surprises he made for me.  How cute is he?  I love that his heart and exclamation mark are upside down.

Walking outside for the first time


The famous picture by the fish at the hospital

Playing his DS while getting chemo

His poison today was a fancy yellow color

Getting ready to go home finally.  I like to bundle him when we go out into the halls.  In my mind it keeps more germs off of him.  I know I know Im kinda weird like that

Mommy having to do the not so fun chore tonight of changing Skyler's dressing on his central line
He HATES this! 

Sky's favorite part...putting the band aid back on because it means we are done.  He says its his best part.

Stacking cups.  Doesnt he look so good doing that by himself?  He has become really steady with his walker and is even standing my himself sometimes.