Super Skyler

2012-03-02T22:35:00.002-08:00

On Tuesday Skyler had another clinic appointment for Vinc and an LP. Everything went really well. His ANC has come down and is finally in the range it is supposed to be but his blood and platelets counts dropped down too low, just as I had suspected. He has been really pale and bruising alot lately so I wouldn't have been surprised if he needed a transfusion, but luckily both levels were barely above transfusion levels so we were able to make it home without any. We had to stop all oral chemo the rest of this week though because of the low counts to let his body recover. I hate having to stop his oral chemo because he needs it to keep the cancer away, but a little part of me was happy because I thought it would give him a week of feeling great. I was so wrong. Last night he spiked a fever and he has been having really bad body aches. His head is really hurting as well as his knees and back. He could hardly walk last night and this morning because he had so much pain in his knees. Even when he is just sitting down his knees are hurting, its so weird. Because of the fevers we went back in to clinic for IV antibiotics and cultures. His ANC was still ok, so thankfully we were able to come home afterward instead of being admitted.

Skyler is still feeling really crummy tonight and keeps saying that he is just so sick. He is now saying his throat hurts and feels nauseous as well. I haven't seen him feel this miserable for awhile and it breaks my heart. It brings back a flood of emotions I was starting to get used to not having. He has been doing so extremely well lately so I have been able to relax and feel really good about things, but seeing him like this again just brings back all those awful panicky feelings. Hopefully he can get the rest his body needs tonight so he can start feeling better soon.

2012-02-24T21:38:00.002-08:00

Today was dressing change day. Skyler's cousin Nicole came over to hold his hand while I changed the dressing. After Skyler was done Nicole let him put a dressing on her so she could see how it feels. It was super cute watching him be the nurse. He knew how to do everything and what order to do them in. He was also consoling her the whole time in case it was hurting her like it hurts him. He actually did this to me last week so I could see how it feels to take the dressing off. It honestly HURTS so bad especially when it rips out all your arm hairs, and I don't have something sore jammed into my arm either. He is so much stronger than his momma for sure.

These pictures aren't very clear because they are off my phone, but meet nurse Skyler. Here he is scrubbing Nicole's arm with alcohol.

In this picture he is saying "Are you scared?"

Dressing buddies!

2012-02-21T21:50:00.003-08:00

Have you ever had one of those days where you take a look around and ask yourself how did I get so lucky? Today was one of those days. We went over to my parents house today and as I was watching Skyler play with my dad I thought how lucky I was to have such a wonderful life, and how did I get lucky enough to have the most wonderful son in the whole world. Sure life has had its bumps in the road, but every single one of those mistakes, trials and hard times has led me to this moment in my life and I couldn't be happier. We have a roof over our heads, clothes on our backs, food in the cupboard and a wonderful supportive family that has been there for us every step of the way. When Skyler draws his family it just doesn't consist of me and him, it consists of him, me, grandma, grandpa, and Ty. I love that he thinks his immediate family is his grandma, grandpa and uncle too. I'm so grateful that even though his family doesn't consist of the normal mom and dad, he still has amazing people in his life that will always be there and love him so so much. I am also so grateful for how well he is doing. Even though he is still receiving cancer treatments he is doing amazingly well. Every run, jump and smile makes me beyond happy. What more could I ask for?

Medical wise I really don't have much to update on except that he is looking pretty pale lately so he might need a blood transfusion in clinic on Tuesday. That sure doesn't stop him from running around all day though. I seriously don't know how these kids do it. If the roles where switched and I was the one with cancer I'm sure I would be laying in bed all day moaning and mad at the world. Not these little kiddos. They can get poison and other people's blood pumped into them all while they are playing with toys and laughing. Amazing. If Skyler does need blood this will be his 185 transfusion. Crazy huh? That means 185 strangers out there have helped save his life. Words cant express how grateful I am for those people who took the time to donate. I think it would be so awesome to be able to see who your blood is going to and how it really does save lives.

I was looking through old pics and these made me laugh so I thought I'd share. The bottom one with his eyes closed is how he would always smile when someone said "say cheese." He was three in these pictures.

2012-02-16T20:21:00.000-08:00

As I mentioned in a previous post our little cancer friend Millie has relapsed and now needs a bone marrow transplant. She has the same cancer as Skyler and its not common for the cancer to come back during treatment, so that's why they went with the more aggressive form a treatment. They tested her little brother to see if he is a match to donate his bone marrow but we found out recently that he is not. Millie will need bone marrow to save her life from a complete stranger from the bone marrow registry. We are trying to get as many people to join to see if they are a match for sweet Millie and many other children who are waiting for a match. Also, if Skyler were to relapse (knock on wood) and needed a transplant he would have to go through the registry as well because he has no siblings and a parent match is extremely rare. To register is so simple. They will send you a packet in the mail and you just have to swab your cheek and send it back. To donate is simple as well. They just take marrow from your hip, a procedure these little kids have all the time. Thank you.

Isn't she the sweetest thing?

Just click the link below

http://marrow.org/Join/Join_Now/Join_Now.aspx?promo_code=marrow4millie

2012-02-11T15:18:00.000-08:00

The other day Skyler and I were at the store when I noticed a couple little kids running around in the same isle as us looking at the cereal. Their mom was getting so frustrated and angry with the kids because they wouldn't hold still and get in the cart. I'm definitely not judging because I don't know what her life is like or what is going on, but I wanted to shake her and say "Your kids are running, isn't that wonderful?!" Right before that as we were walking down the isle Skyler saw a little hop scotch thing on the floor. He looked at me with determination in his eyes and asked "Mom do you think I can do it?" I told him I knew he could. Next thing I knew he was hop scotching and so proud of himself. I was in that cereal isle almost in tears while I watched my son do this. I wanted to say to that mom "Don't take the little things for granted. Take a step back and be grateful for your kid's health and strength."

Cancer has changed my perspective on everything. I look at life so differently now and I'm so grateful for the little things in life that we are blessed with, like hop scotching. Before cancer I'm sure I would be that mom yelling at my son to stop running around. I didn't know how lucky I was that he could do that. I didn't know that there was a world where kids are too weak to walk, let alone run. I also didn't know that there are so many kids that have lost limbs to this monster and go through months of therapy to be able to walk again on a prosthetic. I hate cancer with every part of my being, but there is one thing I am grateful to cancer for and it is this new prospective on life. I can never take the little things for granted again.

2012-02-08T22:58:00.000-08:00

One of my biggest worries as a mom of a child with cancer is getting sick myself and not being able to care for him, but it happened. Last week I came down with a nasty virus which landed me in the ER. They ended up admitting me for dehydration and the fact that they couldn't get my blood pressure up. That bug must have been one heck of a super bug to get past my OCD hand washing and sanitizing! Whenever anyone in my family is sick I stay away like its the plague but this time that plague was me so I couldn't be around Skyler. He ended up staying with my parents for the weekend while I got over it. I have been so scared of ending up in this situation and didn't know how Skyler's medical needs would be taken care of but we survived. My mother in law took him up to clinic to get his line flushed and dressing changed. This was the very first time I haven't been with Skyler at the hospital and lets just say I'm glad I was too drugged up to think about it. I was also able to send Skyler's antibiotic and chemo home with my parents and it worked out great. Skyler had a wonderful weekend at Grandma and Grandpa's and everything turned out just fine. It was hard to be without him for three nights but I think it was really good for him. As much as parents need breaks from their kids sometimes, I'm sure kids need breaks from their parents sometimes as well. I never thought I would say this but I'm glad this happened. Now I know we can survive when things like this are thrown our way. Its a big confirmation that we are living again and life is on the right track. It feels great. It was also a great blessing that Skyler didn't end up getting sick. I'm grateful his counts were high enough and his immune system was working as it should be. I don't think it was just a coincidence.

Skyler has been doing awesome lately. He is so active and is always running and throwing himself around. His body is getting really strong and you can see how happy he is that he can do things he used to be able to do. I cant wait for the summertime when he can go and play outside. He has been feeling so good and has so much energy now so it will be a wonderful thing when he can go out in the backyard and sunshine and run around. For now his bed gets alot more use than just sleeping in it. I'm sure I am the only mother in the world that encourages jumping on the bed. You do what you gotta do though when your kid needs to keep his body moving.

One of Skyler's favorite games is Monopoly. I know weird right? To me its one of the most boring games out there but he LOVES it. His favorite part is counting the money so lately he has been really into money. The past couple of weeks his favorite thing to do is sell his toys. He will disappear into his room for awhile and collect a big pile of toys to sell. He sets them all up in an organized group and makes price tags for each thing. The running price for most of his toys are $1.00 or $1.01. When he is done setting up he runs out so excited to show me what he has done and all the things I can buy. I usually end up buying most of the stuff (how can you say no to that cute face who is sure you need a transformer to make it through the day) And because they are mine now they end up in my room, so basically his toy room is now surrounding my bed. It really is so cute and he is learning all about money and it is helping him with his math skills.

I am so grateful that he is doing so well. Even though he is still in active treatment we are starting to get a glimpse of what life used to be before this evil monster called Leukemia took over our lives. I am also so grateful for the love and support that we are shown everyday. It is one of the best feelings to know that there are people (some I haven't even met) that are praying for and sincerely care about my son. I don't know where I would be without you all. Thank you from the bottom of my heart!

I just had to add this picture because I thinks its super cute. He put on my glasses and this is him being cool.

2012-02-06T21:44:00.000-08:00

Tonight I am asking for many prayers on the behalf of Skyler's cancer buddie Millie. After two years of fighting the same monster Skyler is, she finally finished her last chemo on Thursday. Sadly today they found out her cancer has returned. She goes in tomorrow to start battling this awful disease once again but this time she will need a bone marrow transplant. They are testing her little brother's bone marrow tomorrow to see if he is a sibling match. Please send an extra prayer for this sweet little girl and her family and also that her brother will be the match she needs for transplant. I am devastated beyond belief and just in shock. I hate cancer and everything it takes from these children's lives.

WE LOVE YOU MILLIE!!!

2012-01-31T23:16:00.000-08:00

I cannot believe how fast a month goes by lately. Today we headed back up to clinic for more chemo and an LP. I was really looking forward to it actually because I was so curious what his counts were. I have basically been letting him be just a normal kid going places and playing with friends so I was hoping his counts weren't bottomed out or something. To my surprise they came back too high. His ANC was 4.0 way higher than it should be, so they raised his oral chemo dosage back up to 100%. All of his other numbers were just where they should be though so that's great. They even had his Vincristine ready to push before we went down to RTU so that was great too. I love not having to drag a sleepy grumpy child back up to clinic after an LP just for a little push of Vinc.

While we were waiting for our turn in RTU, our favorite child life specialist Lindsay came to play with Skyler and keep him entertained while we waited to go back. Lindsay is still the only person up at the hospital that Skyler will talk to and interact with. All the nurses and doctors try so hard to get Skyler to talk to or even just smile and them but he wont budge so its wonderful to see him talking and having fun with someone else besides me while we are there. We got lucky with a great anesthesiologist too who was really great with Skyler. When he came back to get us he told Lindsay she could come back too and Skyler actually let go of my hand and ran back to the room. Yup I said ran! He normally has me carry him back there and buries his head on my shoulder because he gets really nervous and scared right before. Today was so different though, I was amazed watching him. It was like I was looking at a different kid. He also just got up on the table and started playing with Lindsay and the nurse and and didn't even really pay attention to me. I have always held him in my arms while he falls asleep but today he just sat there and played up until the moment he fell asleep. It was great and I took the opportunity to record him. Here is just a little part of that video when he falls asleep. I just want everyone to see how fast it is and how it is such a different atmosphere than the O.R.

2012-01-23T21:30:00.000-08:00

Skyler had another first the other day. He walked down the stairs at my parent's house all by himself! This is such a huge accomplishment for him. Because of all the chemo his little body has received and from laying in bed for five months straight his bones are so weak. He has lost so much bone strength especially in his ankles which cause him constant pain. He tries so hard to push through it though so he can be like every other kid but I can tell he is in so much pain when he walks.

When he first started to be able to go down the stairs it was just sliding on his bum or crawling. Lately he has been able to walk up and down the stairs with help from me or holding onto the wall or railing, but the other day was the very first time he went down the stairs without any help. He usually cant even step off a curb all by himself so this was awesome! Here is the video of it (sorry about my annoying scream at the end)

2012-01-20T19:29:00.000-08:00

I was going through some stuff today and found this poem I wrote back when we were in the hospital, so I thought I'd share.

Holding you in my arms so tired and weak,

I never thought this would be your world

So weary and bleak.

You are supposed to be running laughing and having fun,

Not laying in a hospital bed away from everyone.

Your skin should be vibrant and glowing with tousled sun kissed hair,

Not pale bruised and sunken or a head without hair.

The noise I hear from your room should be giggles and squeals,

Instead I hear machines beeping and humming

And squeaks from IV pole wheels.

An owie for you should be a little scraped knee,

Not big wounds, scars or stitches and pokes so frequently.

This monster called cancer has taken a lot from you,

Taken part of your innocence and childhood

A fact I wish wasn't true.

But Skyler there are things that cancer cant touch.

It cant touch your smiles, your tender heart, or that positive attitude I love so much.

It cant touch the way you make me laugh,

Or the way you make me smile.

It cant touch your courage, your strength and inner light that shines bright for miles.

Yes, cancer can be scary and hard or leave you feeling blue,

But you have turned it around and made cancer FEAR YOU!

I love you my son,

You make my world oh so bright.

We are in this together,

We will win this fight.

Love,

Mom

2012-01-15T20:03:00.000-08:00

Skyler has been having so much fun lately playing with his cousins. He runs around laughing and having so much fun. It's the best physical therapy out there for him. Since it's the dreaded cold and flu season though most of my family has been sick which means Skyler cant be around them. We have had to be very creative lately in what we do to keep us entertained. One of which has been bathtub fishing. So simple, yet so much fun. Throw a bunch of magnets into the tub and attach a magnet to the end of a fishing pole or even a stick and catch some "fishies". This kept Skyler entertained for hours.

Trying to get one to bite.

Reeling it in...

Look at that catch!

Another fun thing Skyler has been able to do is finally play in the snow! This was the first time in over two years that he has done that. Last year he was in the hospital of course and the year before that he kept getting croup over and over so I didnt ever let him get in the snow. I wasnt planning on letting him play in the snow this year either but as we were driving around the neighborhood after the first snowfall looking at all the snowmen everyone made I just couldnt keep that away from him. I wanted to give him the joy of making his own snowman. I bundled him up and out we went. We tried so hard to make those awesome snowmans you see in movies but we found out that snowman making is not one of our talents. It was quite hilarious watching us try and roll a ball of powder. We did finally end up making a cute little one though and also had a fun snowball fight.

He was so happy to be able to throw something at me and not get in trouble.

If you squint your eyes just right you can see our tiny little snowman. He even had goldfish eyes and pretzel arms. That's about as creative as we get snowman wise.

2012-01-12T20:18:00.000-08:00

For Skyler's birthday this year I want to hold a blood drive in honor of him. What better way to celebrate his life than helping save another life? Skyler would not be here to celebrate this birthday if it wasnt for the generous people that took the time to give blood. The blood drive will be held May 5th in North Salt Lake from 10:00 am to 3:00 pm. I know its really early to tell everyone about it but I just want to put it out there so you can save the date. I need at least 35 people to sign up to donate blood, but I want to make this a big deal, so I would love it if we got way more than 35 people to sign up. It doesnt take up much time at all. The needle is only in your arm for 6 to 10 minutes!

If you would like to sign up or have any questions please email me at crystaln_isaacson@yahoo.com

Also you can go to this site if you have anymore questions www.utahblood.org

Thank you!!

2012-01-08T20:09:00.000-08:00

One thing that has been therapeutic for me lately is to make videos of Skyler's cancer journey. He is doing so well now that we have been able to resume some sort of a normal life. I feel like since things are pretty good now that I should be back to my normal self again and everything should be perfect, but the truth is emotionally I'm just not there yet. Even though its been over a year I feel like I am still trying to recover from what we went through. I think it will just take time to make those images and emotions I felt not so close to the surface anymore. At first I tried just blocking everything out of my mind and not looking at any pictures of what Skyler looked like when he was really sick, but I have learned with Ben's death that its better in the long run to deal with this kind of stuff head on. As I look through pictures now to use it helps me to remember that he did go through (excuse my language) hell and back, and just because he is doing well now it still doesn't erase what happened a year ago.

I found this song on another cancer cutie's blog and it brought me to tears. It's exactly how I felt those many nights that I prayed and plead for my Father in Heaven to spare my son's life.

http://youtu.be/6FaAW8QYzLU

2012-01-06T22:15:00.000-08:00

Today is a good day, one I will always remember. One year ago today Skyler was finally able to come home after four and a half months in the hospital. Today is also my amazing mother's birthday which makes it so much more special. From the day Skyler was born my mom has been there for us through thick and thin. These past few years have been anything but easy and I know I wouldn't be doing as well as I am today if it wasn't for her. She is my rock and someone I know will always be there for me. She is so much more than just a grandma to Skyler, she is a very vital part of his life. I am so blessed to be able to call her my mom, and for Skyler to call her grandma.

Grandma's hold our tiny hands for just a little while, but our hearts forever.

-Author Unknown

Happy Birthday Mom!!

We love you!

2012-01-03T20:31:00.000-08:00

We headed up to Primary's today for our fun monthly clinic appointment and LP. I cant believe how fast these months go. Everything went really well today and we were in and out pretty quickly. They had his Vincristine ready for him when we got there so we didn't have to come back up to clinic when he woke up from his back poke. We found out his ANC is way too high so they upped his dose of his oral methotrexate at home. With this last infection he was off all oral chemo for a couple weeks but he was able to go back on them a couple weeks ago. Ever since he has been back on them he has been really nauseous. You forget what this poison does to their bodies when they take it everyday, but it was a huge difference in how he felt when he didn't have that horrible stuff in his body. I'm hoping that this new dose wont make him any sicker but we need that ANC to go down so we know its keeping those bad guys away.

Lately Skyler loves to take a stuffed animal with him when he gets his back poke so he doesn't get scared, but when we got to the hospital we realized we left it at home. The child life specialist was able to find him this polar bear though so he had something to comfort him downstairs. He LOVED it and was so happy. I was so grateful she did that for him.

Chemo and Xbox...what more could you ask for?

We are actually both getting used to this new line. The dressing changes don't hurt him as much and its only a single lumen so its quicker to take care of everyday. He likes flushing and hep-locking it for me lately.

When we were down in RTU waiting to go back, the wound nurse came and looked at his chest site. The hole is healing nicely and she actually told me I can stop packing it now and just put a new bandage on every other day. I have been having to stick some gauze like stuff into the hole in his chest everyday so the skin on top doesn't heal before the hole closes. The girl sitting next to him is another child life specialist. She is one of our angels. Still after almost a year and a half Skyler will not talk to anyone at the hospital. Most of the time he wont even acknowledge anyone is in the room or talking to him, but the last couple of times in RTU Skyler actually has been talking, laughing and playing with her! It seriously is a miracle and it brought me to tears seeing him actually talking and playing with someone besides me at the hospital.

This is another one of our angels, Robert. He is one of the most caring docs I have ever met. He truly cares about each one of his patients and goes above and beyond. He has taken such good care of Skyler and even me. I found out recently that he is leaving and I am so sad. We will miss him so much! He came to say goodbye to Skyler today and gave him a handful of gold dollar coins. He wasn't even supposed to see Sky today but he came to find us downstairs to say goodbye. This was after Skyler starting talking to the child life specialist so I was already emotional and started tearing up even more. We will sure miss him.

This is back after he got the sleepy medicine. The doctor is cleaning and prepping his back for the poke.

Sticking the needle in...

. This is her taking out some of his spinal fluid.

And then replacing it with chemo. I'm surprised these pictures aren't hard to look at. Seeing stuff jabbed into my son has become a normal thing now a days. Actually, this looks alot nicer than some of the things I have seen done to him.

All finished and putting a band aid on.

He woke up so fast today! I hardly even had to wait in the hall at all and when she came to get me he was already totally awake and wanting crackers. He loves the hospital crackers and asks for them every time.

2011-12-31T19:12:00.000-08:00

Skyler certainly has come a long way since this day last year. 2011 has held alot of ups and downs for us. Alot of pain and suffering but also alot of triumphs and blessings. I am looking forward to moving even farther ahead in this coming year and having alot more ups than downs!!

HAPPY NEW YEAR!!!

2011-12-27T16:35:00.000-08:00

Christmas this year was perfect. Just the fact that we were at home and Skyler is doing so well made it so special. We slept over at my parents house on Christmas eve so we could open presents with my parents and uncle Ty. Skyler was so excited for Santa to come and he got just what he was asking for, a 3D Mario DS game! It was so fun to see the excitement on his face when anyone mentioned Santa coming. Last year he was still too sick to get really excited about it so it made this year even more magical. Before we went to bed he helped my mom make cookies for Santa. He decorated them and put those out along with a big glass of milk. Another thing that made this Christmas so special was a couple presents Skyler gave to me. On Christmas Eve he surprised me with a beautiful vase full of flowers. He loves getting me roses and it melts my heart every time. He also got me a gold childhood cancer ribbon necklace with real diamonds on it. It is so beautiful and absolutely perfect, something I will always treasure. I have been looking for a necklace like this for so long but couldn't find one, so this surprise was awesome. He actually gave it to me at the beginning of December right after he got it because he just couldn't wait to give it to me. One thing about Skyler that I love is that he LOVES giving people presents and it is so hard for him to wait to give it to them. His dad was like this too so its really cute to me and I love that he enjoys making people happy. A little while ago we were talking about what kind of jobs people have and he said that his job in this world was to share and to make people happy. What a special boy he is and a great reminder everyday about what is really important.

I didnt take too many pictures because I wanted to enjoy each and every moment of that day. Here are a few though that I was able to take.

2011-12-23T23:26:00.000-08:00

One of the greatest lessons I have learned this past year is how good people really are. I have been so humbled being on the receiving end of such amazing acts of kindness, and it has taught me what kind of person I want to become. As the holidays approached this year all I could think of was that I wanted to give back in some way. When I think about Christmas, as sad as it may sound, I think of the PICU. We didn't actually spend Christmas day in the PICU but we did spend most of December there. My heart aches for the families that are going to be spending their Christmas in the PICU this year. That is the last place anyone wants to be with their child, let alone on Christmas day so I wanted to let them know that someone cares and is praying for them. I wanted to give a gift that was really helpful for me down there and one that was helpful to Skyler. I remember at night when I was finally able to lay down in my "bed" for a couple of hours I froze to death under the vents. A fellow cancer mom gave me a nice big blanket that covered my whole body and it was a life saver, so I wanted to include a nice big blanket in the gift. The blanket was also really helpful when after finally getting to lay down the nurse has to wake you up for shift change and make you go out for an hour, and I was able to take my blanket and fall asleep for an hour in the waiting room. The blanket was big enough to cover my head so I didn't have to see everyone. When I asked Skyler what was the one thing that gave him the most comfort he told me it was a teddy bear he received, so I had to include a teddy bear for the kids. Since everyone down there knows Skyler as Super Skyler I had to put a cape on the teddy bears, and since I think all these kids are superheros it just fit. I also attached a tag that said "Hugs From Skyler."

I am so grateful for the people who helped make this happen by donating some blankets and money. I'm also so grateful for my grandma who made all the cute superman capes, and for my mom who helped me put this idea into action. I am so blessed to have such a wonderful support system and to have people really care and want to help with something I am so passionate about now. I hope Christmas this year is as special to you all as it has been for me.

Here is the cute capes my grandma made. The brown bears for the boys and white bears for the girls with pink capes.

I also got his cake for the staff as a thank you for making it possible to have Skyler here with me for another Christmas.

MERRY CHRISTMAS!!

2011-12-20T21:25:00.000-08:00

Below is a cute video of Skyler bustin a move! I just couldn't stop smiling the whole time he was dancing because this is the best gift I could ever get for Christmas this year. I couldn't help but think back to this video of him so tired and weak that it took all his energy to even hold his head up.

Now he has enough energy and strength to pull off these sweet moves. Miracles do happen! I love this child more than words can even say.

http://youtu.be/e3SNEANIeco

2011-12-17T22:20:00.000-08:00

Skyler was finally able to stop the vancomycin on thursday...yay! I was so ready to be done with hooking him up round the clock and so was he. Also, since he has been off all his oral chemo for the last 10 days that means his ANC is high, a great immune system to go to a family Christmas party with. I was really excited to take him to this party and to have him play with his cousins that he hasn't seen for awhile. He was able to run around with all the kids and open presents and just have fun. Even though his counts are great I still had him wear his mask when he was around everyone just to be on the safe side. Plus it helped calm me down alittle because honestly I was freaking out inside. I loved that we were able to go do something normal that we do every year (besides last year) but at the same time it is so hard to try and pretend everything is normal when it is not. I have had to go from having him live in a bubble to letting him be out in the world again. When he hit maintenance I was so happy to finally get back to how things used to be. I never in a million years thought it would be this hard. I'm having to relearn how to live again but still have in the back of my mind the images of this past year and knowing something as simple as getting a cold so quickly lead to something worse and land him in the ICU again. I hope one day that this constant struggle will fade and living out in the world become natural again.

I tried really hard not to let these feelings show though so Skyler could just relax and have fun. It worked because look how happy he is in these pictures!

2011-12-11T10:15:00.000-08:00

Yesterday we had a wonderful surprise. Skyler's cancer buddy Jessica was up here from St. George and came to visit. We met Jessica and her family when Skyler was still in ICS and hadn't been able to come home yet. She is now in remission and totally off treatment!!! She gives me so much hope. I love her and her family so much. They are some of the nicest people you will ever meet and just have a light about them that draws you in. This family will always mean so much to me. I am so grateful that they were able to stop by and say hi and see how good Jessica looks and see how well they are doing. Skyler loves her so much and couldn't stop talking about her when they left.

2011-12-09T11:08:00.000-08:00

I love this time of year and its even more special this time around because we get to celebrate in the comfort of our own home. I love decorating for the holidays and one of my favorite part of Christmas is putting up our tree. Skyler also loves to decorate and finds so much joy in picking out all the decorations so I let him chose everything. This year Skyler gets so excited when he sees anything gold. When we go to the store and he spots something that is gold (like a shiny gold purse or a piggy bank) he yells "Yay its gold for childhood cancer!" He really does believe that everything they make that is gold is specifically made just for bringing awareness to childhood cancer. So this year when I asked him what kind of tree we should do I wasn't surprised when he told me he wanted a gold one for childhood cancer. He helped me pick out all the gold ornaments and ribbon and put everything on the tree by himself. It was so fun to watch him as he decorated and I couldn't help think back to where he was this time last year, laying in a hospital unable to move or talk. It brings tears to my eyes everytime I think how far he has come and it makes me so much more grateful for the little things that we have.

2011-12-06T21:15:00.000-08:00

Line attempt number two was a success. We went early yesterday to fluoroscopy where they started an IV in his hand so they could sedate him. Skyler did great and was so brave. I think it helped too knowing this would be his last IV start (hopefully). To sedate him they used versed and ketamine. I hate ketamine because it makes their eyes move back and forth really quick and they still look awake. Even though he has his eyes open and he looks like he is looking at you he is in lala land and not aware of things. Also the versed helps him to forget everything that happened. I was able to go back with him and hold him when they gave him the drugs. They gave him versed first to relax him. I love this drug, and by the goofy smily look on Skylers face he like it too. I layed him down and he just kept laughing and smiling at everything. He kept saying how funny I looked and that all the big machines in the room were so silly. I left as they gave him the ketamine and went to his happy place. They placed the picc in his right arm. Its alot lower on his arm than he had before and it dangles down lower than I wanted it to but it will just take some getting used to like everything else. We have been able to wrap coban around it so it helps secure it and keep it out of the way. The surgical team also came down while he was out and changed his dressing on his chest. She removed all the gauze and had to put more in because it was deeper than she wanted it to be. When we were at clinic today and he had the sleepy medicine she came back down to look at it again. She said it looked so much better and was able to take the drain out. The wound team is going to follow us until it is all the way healed. Just like with his wound on his bum I have to pack some stuff down into the wound everyday so it will heal from the inside out and not leave any pocket of infection. They also started him back on vancomyacin, an IV antibiotic. Instead of the oral antibiotics they put him back on this for 10 days now that he has a line. I have to give it to him every eight hours. Considering all that has happened he is doing so well. He looks great and has a great attitude about everything.

At clinic today he had vincristine and was also scheduled for an LP but the doc decided to hold off on the back poke so we dont introduce any new source of infection. He said he would probably be fine but he also said if anything is going to happen it will happen to Skyler. So instead of a back poke they changed his chest and picc line dressing. Im so grateful that they were able to do those both while he was sleeping so I didnt have to tonight.

He did have a reaction to the vancomyacin today that they call redman's. His face and neck went all red and he started itching all over. The itching isnt common with this but it went away when the redness went away. We just have to slow down the infusion next time and he should be ok. Its been a long and exhausting day but we got alot accomplished and dont have to go back to clinic for another month. I love that I can say that.

I didnt take alot of pictures the last couple of days but here is the new picc. I just hooked him up to the vancomyacin in this picture.

2011-12-04T10:48:00.000-08:00

Skyler is doing so well. Luckily we caught the infection early before it made its way into his bloodstream. It was just localized in the tissue surrounding the sites. I thought the redness what just a reaction to the steri strips that they placed on there, kind of like the reaction he had when they took out his chest tube. I wouldnt have taken him in if he hadnt have woken up that morning with the whole left side of his face completely swollen. I knew right then something was wrong and took him to the E.R. They confirmed that it was infected and that it would have to be removed immediately. They also did an ultrasound of the area and his neck and found a blood clot on the line. Thats what was causing his face to swell. But with them removing the line they said that would most likely take care of the blood clot without having to use blood thinners. A couple hours later Skyler was back in the operating room again to remove the brand new port.

I sat in the waiting room and bawled. Its the worst feeling to know that the decision you made is what's causing your child pain. I beat myself up for awhile but then I realized that if I had to do it all over again (not knowing the outcome of course) I wouldnt change a thing. I did my homework and had consults with multiple doctors, and the surgeon and have talked to many moms of kids with ports. I also couldnt keep torturing child with dressing changes every four days if I had the option not to. I also wanted to give him the best opportunity of living as normally as he can these next three years and be able to bath and swim again. Obviously it didnt turned out how I wanted but thats one thing I have learned in this world, nothing is for certain. You have to make the best rational decision you can and pray for the best.

Skyler woke up from this surgery in a lot less pain this time. He actually didnt need any sort of pain medicine for two days. They admitted him to ICS and started two strong IV antibiotics. This admission was so different than the others that we have had. Since the infection wasnt in his bloodstream he wasnt having any fevers and was doing so well. For some reason I wasnt worried, I had a calm feeling the whole time (which is something so new to me in the hospital) and we just had fun. We saw nurses that we love and I was able to talk with other cancer moms that I have come to know. We played hide n seek and made crafts. The only hard part was with no line in his body that meant they had to start an IV in his hand. He actually had three started because they kept going bad. He also had to wake up to a finger poke every morning so they could do his labs. By the end, the pokes were not a big deal to him anymore. He said that he would much rather get pokes everyday than have a line in his body. He thought it was so cool that he didnt have any sort of central line and asked me "So does this mean that Im a normal kid now?"

They were able to send us home on oral antibiotics so he didnt have to stay for a week in ICS for IV antibiotics. He has a drain in his chest and gauze still packed in there that I have to pull out everyday. Each morning I have to pull out a half inch of the gauze and put new bandages on. Tomorrow they will take the drain out and place a picc line in his arm because he has an LP and chemo the next day. He has had plenty of piccs before but has never come home with one so it will take some getting used to. We have learned to adjust to new things though and make the most out of what we have been dealt. They will place the picc under fluoroscopy so they can watch on a screen where they are placing it. An IV team could actually come in and do it in RTU with his LP, but with his history we decided to do it this way. Its been a long week but it hasnt been that bad. Im used to infections making him deathly sick so this infection has been ok to deal with. That seems strange to say but I have realized that it could always be worse. Thank you so much for all the kind words and concern, it means so much to me. I am so lucky to have such amazing family and friends!!

That is the drain in his chest and the gauze I have to pull out. He now has some more battle wounds to add the many he already has. Looks yucky huh?

I also want to say congratulations to my brother and his beautiful wife who had a baby the same day Skyler got his port out. She had to undergo an emergency C-Section and the baby will have to remain in the NICU for a couple weeks because he was very early but they are both doing really well. Jen and Skyler were actually in surgery at the same time...it was a crazy day. I am so happy for them and am so excited for this new addition to the family. Little Ashton is absolutely perfect and so adorable!

2011-11-29T09:06:00.000-08:00

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.

2011-11-27T21:01:00.000-08:00

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....

2011-11-24T23:39:00.000-08:00

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!!

2011-11-22T15:30:00.000-08:00

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.

2011-11-16T12:37:00.000-08:00

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.

http://www.youtube.com/watch?v=1P6Dy6j7lsE

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

2011-11-13T21:27:00.000-08:00

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.

2011-11-07T22:50:00.000-08:00

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!

2011-11-01T10:23:00.000-07:00

Anybody who really knows me knows that I LOVE Halloween. Its such a fun holiday and one of my favorites. I love decorating, finding our costumes, and who doesn't like a bunch of free candy? This Halloween was extra special for me because last Halloween we spent it in the PICU. I still got Skyler a costume and dressed him up though. He was still pretty out of it at the time but I couldn't resist. He had so many tubes and lines attached to him that I actually had to cut the whole back of it off and just lay it on him. He was the cutest Scooby-Do I've ever seen!

I always like to let Skyler pick out what our costumes are going to be. The year before he was diagnosed he decided he wanted to be batman and that I was going to be batgirl.

This year Skyler has been really into Mario so he decided thats who he wanted to be and he wanted me to be Luigi. Uncle Ty let Sky pick him out a costume for too and chose Wario for him. Skyler was such a cute Mario and rocked his costume!

Mine and Ty's were anything but flattering....

It was still fun to dress up and see Skyler's excitement when we were all in our costumes. Im so grateful for Ty for doing this with us.

We were able to go to three places this year trick or treating. Our first stop was my mom's work. I love her work, and the people she works with have been so supportive of Skyler and they always have such awesome decorations and costumes. We went on my mom's lunch break so she could go around with us. Skyler's cousins were able to come too which made it extra fun for him. My mom works in a call center with alot of people so I made Skyler wear his mask. We put his sweet mustache on the mask if you cant tell what that is.

Me and my Mario! Our costumes came with inflatable belly's which we had fun bumping each other with.

Here are the kids going around to each person with candy. Skyler ended up with TONS of candy. The part he loves the most about trick or treating is being able to pick out the kind of candy he wants. He is super picky and would look through all of them to find the right one.

His favorites this year were pixie sticks and kit kats

Our next stop was trick or treating on Main St. with Skyler's other cousins Emma and Grace. Skyler loves them and was talking about going trick or treating with them all day.

We bumped into Skyler's preschool teacher Tawni. Im so glad we saw her, Skyler loves her and so do I. Im so grateful for that one year he was able to go to preschool before he was diagnosed.

This is Skyler's Super Mario pose. I had him wear a mask part of this time because we went up and down the street to all the stores and there were so many kids and too many of them were coughing. It was so hard for me to let him just go up with all the kids to get candy while I sat back and watched, but he was having so much fun so it was worth it. I figured he had gloves on for his costume and had a mask when there were swarms of kids, so I did my part to protect him but still let him have a fun experience with all the other kids.

Here are the kids with their loot. Skyler got another bag full of candy. He was in heaven!

Our next stop was back to our house to take him around the neighborhood. I cant get this picture to flip but he sat here by the door waiting for other kids to start so he could go too. He was just as excited about handing out candy to the kids as he was getting candy. I let him hand out the candy by himself and he loved it.

Ty and my mom came over to take Skyler out with me. Skyler had been walking around all day so by the time we went around the neighborhood he was worn out. He still wanted to go to all the houses though even though it seemed like every house with the lights on had a lot of stairs for him to climb. After about three or four houses of me helping him walk up the stairs I finally just started carrying him up and down. It was quite a sight to see me with my big belly trying to pick up him with his big belly. Somehow we managed but not without a lot of laughs.

We brought the stroller along because I knew he wouldnt be able to walk the whole way. Ty called it his mario kart and drove him to all the houses. I love this picture!

Skyler was so cute going up to the doors and saying "Trick or Treat and Thank you" all by himself. I almost got teary eyed at one point thinking of how far he has come. I cant believe it was one year ago that he was laying in a hospital bed unable to move on his own. This little guy is my hero. I hope to one day be as strong as he is.

When we got home of course he had to count all of his candy. Way too much candy for a child, but it was sure fun getting it. It was so cute, whenever he saw a candy at a house that he thought either my mom, me, Ty or my dad might like he got those so he could give them to us. He loves sharing and giving away things to make people happy as much as he likes to get things. When we were getting our candy bowl ready to give out to the trick or treaters Skyler went into his room and grabbed a big bucket full of toys. He said he was going to give these to the kids too to make them happy along with a piece of candy. I love that sweet quality about him.

This day was definitely a success. He kept saying how much fun it all was. After we were all done he asked me how many more days there were until the next Halloween. I told him 365 and he said "Sweet I cant wait!"

HAPPY HALLOWEEN!

2011-10-28T22:11:00.000-07:00

My least favorite day of the week is dressing change day. Im supposed to change Skyler's dressing once a week but his never stays on longer than four days so its more frequent than that. This is Skyler's least favorite day of the week too because it hurts him alot. I used to be able to do this easy by myself but the stitches that hold the line in place have been out for awhile so its easiest to have someone come and help hold the line in place or open things for me while Im holding it so I can stay sterile. Uncle Ty came today so Skyler was really excited, he screams alot less when he is here. He sure does love this guy. He told me one day that Ty is his bestest friend in the whole world, then he said "Dont worry you're my second best friend mom."

As you can see those stitches are useless and the only thing holding that line in place is a little cuff in his neck, so the line has come out a little bit. It still is in position though and draws back and flushes just fine for me.

He hates this part the most. I have to scrub alcohol on the site and it hurts him so bad. Plus when I take the dressing off its red and sore from that so that doesn't help either. The times when I have had to do this by myself and there is no one there to hold his hand he screams bloody murder. I'm surprised I haven't had the cops called on me yet.

This part is the hardest for me as well. I hate the fact that Im the one that's causing him pain. I know Im doing it for his own good but it still breaks my heart and physically makes me nauseous when he starts screaming.

After I let the alcohol dry I have to put cavilon around the edges. This helps protect his skin and helps keep the dressing on a little longer. It looks like Im putting it right on the site in this pic but Im just putting it around where the white part of the tape will go. As you can see the crying has stopped and he has a relieved look on his face. He likes this part the best because he says its soothing for him.

Finally Im ready to put the dressing on. The whole ordeal only lasts about ten minutes but seems longer because after Im emotionally drained.

Then we get to repeat this lovely process in four days. Definitely not the funnest thing in the world.

2011-10-26T20:29:00.000-07:00

Tonight we were able to go to our first HopeKids event. Skyler was able to paint a pumpkin and do other fun Halloween crafts. HopeKids organizes events for kids with life threatening illnesses and provides a way of healing through the power of hope and fun things to look forward to. I have been waiting to take Skyler to one of these but never was able to because of the fevers he had for months. Finally today he was feeling great and his counts are really good so we were able to go. He was really looking forward to going and talked about it the whole day. We had a very sweet student who sat with him and helped him with his pumpkin and crafts the entire time. Even though he was very shy and didnt talk you could tell he was really enjoying himself. He especially loved the candy table and the volunteers that kept bringing him all sorts of treats! Wish me luck trying to get him to sleep tonight.

I was so grateful for this girl that helped Skyler. She was so sweet to him and made sure he was having fun.

I love the back of our HopeKids shirts the best, it says got hope?

The finished product! He calls it his alien pirate pumpkin.

He also made a fun bat using his hand prints...

...and a couple fun masks.

Thank you HopeKids for making Skyler's night!

2011-10-23T20:11:00.000-07:00

On Thursday we went to go get Skyler's ears "tuned up". It was his follow up appointment to check his hearing aids to see how they are working out for him. With his hearing aids in it makes a huge difference but he still has been saying huh alot. Definitely not as much, but I could tell they needed to be adjusted a little. Thankfully PCMC has an office here in Bountiful so I didn't have to drive all the way up to the hospital. The first thing the audiologist had him do was another hearing test in the booth, but this time with his hearing aids on. Without them he has minor loss with the lower tones in both ears and a very significant loss in the high tones in both ears. With them on he tested in the normal range with the lower tones and the higher tones were alot better. He still doesn't hear the higher tones in the normal range but its a big improvement so for that Im grateful. After the booth she put his results into a computer and then reprogrammed his hearing aids according to these new results. I've already seen a big difference! We will go back in a couple weeks for another follow up.

I was so proud of him because he did great in the booth this time. He sat through the whole thing and was trying so hard to hear the sounds.

That's the little machine that programs the "hearing eggs". Before Skyler got them he obviously couldn't hear well so he thought we were saying hearing eggs, he has called them that ever since.

Today Skyler had another first. His first bath in over a year! Of course I still bathe him, but I give him sponge baths because he cant get his line wet. This is definitely one of the downfalls of still having his dialysis catheter still in. They do make safe guard things that go over the line so kids can still get in the bath but its sticky and it pulls Skyler's central dressing off so it just didn't work for us. I still wanted him to be able to just sit in a warm bath a play so I came up with what I think was a brilliant plan....saran wrap! I just wrapped him up and put him in the water. It worked great and he was able to finally have a bath. He played in the water forever and I kept having to refill the bath with warm water. His hands and feet actually pruned! Haha I never thought I would be so excited about pruned hands. Its amazing the things I find so wonderful now. You just never know what you really have until its gone.

Such a cutie! Don't worry he can still breathe, it looks tighter than it actually is.

2011-10-21T10:41:00.000-07:00

You know your a parent of a kid with cancer when...

1. Kids with hair look kind of strange to you

2. Your pockets, purse, and other nooks and crannies are full of sanitizing wipes

3. Waterproof mascara becomes a necessity...

4. ..then mascara and any other make-up becomes something of the past

5. You can sleep anywhere, and anything that reclines more than 15 degrees looks "comfy"

6. You don't realize the Sharps container is on the kitchen table until half-way through dinner

8. Your kid could give you precise directions on how to get to the hospital

9. You do your hair and your Oncologist doesn't recognize you

10. You hear a truck back up and you think the IV is beeping

11. You are so proud when your baby finally gets hair and he's 5 years old!

12. Your IV supplier knows the way to your house without directions

13. Your child bumps his knee and says "I should probably get a CT scan or x-ray" instead of a wanting a bandaid

14. You can maneuver a double IV pole while pushing a kid in a little tykes car on a tour of the cancer ward, and make it back to the room before the low-battery alarm sounds and the kid has to pee.

15. The nurses stop responding to the IV alarm knowing you'll fix it

16. Your 5 year old holds completely still while his arm is getting squeezed to death by the blood pressure cuff

17. You child's daily conversations include "leukemia" "cancer" and "chemo"

18. Your 5 year old knows where all the medical equipment goes, and how to use it

19. You can eat with one hand while you hold the barf bucket with the other

20. You keep a bag packed at all times like your 9 1/2 months pregnant

21. Your child knows how to access, flush and withdrawl heparin from his line better than writing his ABCs

22. The pharmacy techs ask you how to spell that medication, again

23. The pharmacy tech says, "your 7 day medication (that they pronounce wrong) will cost $700, there isn't a generic form, do you still want me to order that?" You don't blink an eye and say, "of course."

25. There are four new Mercedes in the doctors' parking lot due to your child's payments

26. You can communicate with your family practitioner in medical lingo

27. You take two dressing change kits everywhere you go

28. You can read the blood work reports better than your nurse

29. You have more meds in your cupboard than food

30. You have more IV meds in your fridge than food

31. You decorate the green chemo masks with silly faces

32. None of the security in the hospital ask you for your ID anymore

33. Your main source of nutrition comes from Tylenol and Diet Coke

34. You wrap your son's birthday presents with medical tape

35. Your child is more familiar with CT scanners and MRIs than a classroom

36. You don't have to ask, "What's that mean" to the previous 35 items

37. You know that the CBC results will either make or break you

38. You hear yourself say, "I'll buy you anything you want" at least once a day

40. You really think this list is funny, when most normal people either don't get it or start to cry

41. When a Radio Flyer wagon is considered an essential transportation device

43. When her ANC is something that determines how well your day is going to be

44. You make new friends, in your pajamas, hair askew, at a breakfast cart

45. When people stare at your child and ask if they are a boy or a girl

46. Your kid takes more medications than your grandma

47. You can reset the IV meds overnight, in your sleep, every 30 minutes without waking up once and still call it a good nights sleep

48. The "CK" on your tee shirt stands for Chemo Kid, not Calvin Klein

50. When every little thing can make you cry

52. You spend most conversations telling people, "it's okay" when really you want to shout out that you hurt really badly inside

53. When your child has to get another poke and screams for the "sleepy medicine"

54. You can make a variety of arts and crafts out of hospital supplies

56. When the doctor finally enters your room and finds you and your child with latex glove powder around your mouth from blowing up the gloves

57. When it's time for your 5 year old to have his vital signs taken and he lifts his arm and sticks out his foot without crying or fighting

58. You have a collection of pink "throw-up-buckets" in every room of your house

59. You think that root beer and Cheetos is a "nutritious meal" because it's all he'll eat

60. Your reading materials consist of insurance statements and bills

61. Your sons hair finally grows back and no one in the cancer ward recognizes him anymore

62. When your bookshelves have more childhood cancer books than potty books

63. You have forgotten how to cook because you spent the last year eating in a cafeteria and having meals brought to your home by kind neighbors

64. A bag of blood is a refreshing and happy sight

66. You wish there was as much GOLD as there is PINK

68. You celebrate when your 5 year old can walk from one side of the room to the other without being exhausted or crying out it pain

69. You have to explain to your kid that cancer is not something every child usually deals with

(I took this from another cancer blog but switched alittle around to fit us)

2011-10-19T22:06:00.000-07:00

I took Skyler to get his first real haircut in over a year today. He has always hated getting his haircut and used to always squirm around, but today he just sat there like a big kid and did so good. I think he was just happy to go back to a place he used to go to. Something normal he can do again. It was really fun to be able to take him there today, but I do have to confess that I miss his little bald head. When Skyler was first diagnosed I never thought I would ever say that because having him lose his hair was hard for me. It made things more real. But now that bald head means so much more to me, it symbolizes strength and courage and to me it makes them even more beautiful. That old saying is so true, bald is beautiful. Even though I miss that bald head I am grateful he has his hair back because that means he is farther along in treatment and that much closer saying goodbye to chemo forever!

He just looks so grown up to me in this picture. Its moments like these that I sit back and wonder where my baby went. Now that we are home and things are settling down a little bit more I sometimes think he should still be that little boy that he was before he was diagnosed. But then I realize it has been a whole year and he has grown a ton, not just physically but he has also matured more because of all he has had to go through.

We also went to a movie this week and out to eat. Skyler chose Iggy's so thats where we went. I dont like taking him out to eat just because I still get anxious taking him indoors around alot of people without a mask, but I put those feelings aside and took him anyway. We pass this place every time we go to the store and he always would say "When I get to maintenance I really want to go there Mom." He was so excited to finally be there and couldnt choose between the two things he wanted, so I said what the heck and let him order both meals. I really didnt think he would eat them both but he actually did. He has been a champ at eating lately.

And what's two meals without two deserts?

I also took him to a movie this week. A new theater opened just down the street from my parents so we decided to check it out. He chose to see Dolphin Tale in 3D. He loves going to movies so he was so excited to go. I love that I can take him to some of his favorite places again and do things he used to enjoy doing before cancer took over our lives.

On our way home we were talking about Skyler's game room. He asked me "Mom when I go to heaven will all my games be up there waiting for me?" I told him they probably would and he said "Sweet heaven is awesome!" I also told him that in heaven there isnt any cancer or owies. You should have seen the look on his face when I told him that, he was so happy. He was even happier when I told him that there are no central lines or pokies there either. It was the kind of happy like when you just tell your child they are going to Disneyland or something exciting like that. He then looked up to the sky and smiled really big. Talking about heaven with Skyler isnt an easy thing to do anymore. I have always talked openly with him about heaven because he knows that's where his daddy is and when he misses him he askes alot of questions. I get choked up even thinking about it now. Sometimes I wish I lived back in that world where ignorance is bliss and parents out living their children wasnt a possibility. As hard as it is being thrown into this world of cancer, it has taught me just how lucky I am that I get the opportunity to take him to the movies or out to eat. Even the littlest things and moments I cherish even more now.

Love you Skyler!

2011-10-15T19:35:00.000-07:00

I just want to say how amazing, strong, and brave these little cancer heros are. I saw a tiny glimpse of what these kids go through everyday and its truly awful. Long story short I ended up in the ER with "stroke like symptoms" and had a CT scan and MRI of my brain, an EKG and some blood work done. I was only there for five hours because everything checked out ok but those five hours were torture. That MRI machine is a scary thing even for an adult and these kids do that all the time. I am so claustrophobic and was starting to freak out a little but I quickly thought of Skyler and all that he has to do and all those other little kiddos that have to have their heads bolted, yes I said bolted, down to a table for radiation and told myself this was nothing compared to what they have to go through. The whole ordeal was something I hopefully dont ever have to do again but these kids dont have a choice. Their everyday lives are filled with hospitals, doctors, pokes, scans, pain, fear, and poison constantly flowing through their veins. As an adult I knew what they were doing to me and what it was for but alot of these kids are too little to even understand why they feel so miserable all the time and why they are constantly having to do things that are scary. I respect and look up to these kids so much. They truly are superheros. I know I could not do what they have to do on a daily basis and still have a smile on my face. They are stronger and braver than I will ever be.

Instead of capes, these little superheros have all sort of tubes and lines attached to them.

Instead of masks covering their eyes, these superheros wear green masks.

Instead of a batmobile they ride around in wheelchairs, on IV poles and hospital beds

Instead of batcaves they live in hospital rooms

Instead of fighting a villain they can see, they fight an evil villain that is lurking in their bodies

Unlike superman or batman these superheros dont come out of the fight unscathed. They come out with plenty of battle wounds

Instead of using big muscles and weapons to fight, these kids use their courage, inner strength and smiles to win their battle.

Whenever I hear the word superhero, this doesnt come to mind.....

This does....

Skyler doesnt fight alone. He fights along side thousands of other cancer heros.

2011-10-11T15:00:00.000-07:00

Skyler had his monthly clinic appointment today. I cannot believe its already been a month and he actually went that long without having to go in. I have been looking forward to this appointment for a couple weeks now, even though I hate going to clinic it just felt too weird that we had so long between visits. Even though I give him oral chemo everyday there is something comforting about him getting chemo through his line. It feels like we are keeping those bad guys away better. It seems strange, but he has been acting and looking so normal lately that it worried me a little. Im so used to always being in survival mode and having so much going on with him that its just so weird to just sit back and watch him be able to be a kid again. He looks SO GOOD! He has gained weight and actually looks healthy.

When we got Skylers counts today his ANC was way too high. They want to keep it anywhere between 800 and 1300 but his was 5500 so they upped the dose of both of his oral chemos. Im hoping his counts will drop soon, not too low but low enough to know that the drugs are actually working. Everything else went great. The doc said he looked so good and I didnt have too much to talk to him about because he isnt having fevers anymore and he is acting great. He did have to go down to RTU for another lumbar puncture for chemo in his spine today though. They didnt have his Vincristine ready for us before we went down this time so we had to come back up to clinic for chemo afterwards, but we were still out of there in four hours. On our way up to clinic when we first got there I ran into one of the resident docs that took care of Skyler in the PICU and she could not believe it was the same kid. She told me that he was truly a miracle.

When we first get to clinic Skyler always gets weighed first thing. His weight went up from 16.4 kilos to 18.4. Awesome! I remember when I had to hold him to get weighed because he wasnt strong enough to stand on his own. This picture makes me smile because he has come along way.

They also have to see how tall he is. The dosage of his meds depend on his height and weight.

He has done this so much that its no big deal to him now.

Im the one that usually draws his labs because I like it done a certain way so its just easier.

Not sure whats up with the face, silly boy but I threw this one in there because I normally dont even see his scar anymore where they took out his spleen because Im so used to it. When I saw this picture I was kinda shocked at how big it actually is. He sure has a lot of battle wounds, good thing he's a boy.

This is down in RTU waiting to go back. They got out some robots for him to play with to keep him busy. He was getting really antsy waiting around because he was so hungry.

After he falls asleep in my arms I leave and wait in the hall. I usually here him start crying back there for mommy before they come get me, but today he took longer to wake up. When they took me back there he was still sleeping so they had me wake him up. Right when he woke up he wanted the usual crackers, cheetos and root beer slushy. He told me today that he likes the sleepy medicine now because he likes feeling dizzy before he falls asleep. Oh boy Im in trouble.

Finally we went back up for vinc. This is just a quick push so it doesnt take long at all. Next month he doesnt have to get a back poke so it should be even quicker. He is so happy about that. He is not a fan of the hurry up and wait game.

Other blogs I read usually put their kids stats on here every clinic visit. I never did because he got labs drawn so often that it was just a pain, but I'll start that now so I can keep track for myself too.

ANC: 5.5

Normal 1.5 to 8.5

PLATELETS: 236

Normal 150 to 400

HCT: 30.5

Normal 34.0 to 40.0 (30.5 is still really good for a cancer kid)

WBC 8.9

Normal 5.5 to 15.5

2011-10-08T16:30:00.000-07:00

Please feel free to pass this on

The Creating Hope Act is...

"...legislation that would incentivize pharmaceutical companies to develop new drugs for rare pediatric diseases, such as childhood cancers, that have not been developed in decades because they are not profitable ... the Creating Hope Act of 2011 ... would expand the cost-neutral Food and Drug Administration priority review voucher (PRV) program, allowing pharmaceutical companies to expedite FDA review of more profitable drugs in return for developing treatments for rare pediatric diseases. Since 1980, the FDA has approved only one drug for treatment of childhood cancer, compared to 50 for adults."
(Read more HERE on the Childhood Cancer Caucus Website)

Oh, boy! This is something we should be shouting out on our rooftops.

Finally, finally, finally something can be done to get more treatments for childhood cancer.

Our own Utah Representatives are not listed as supporting the the Creating Hope Act, but with a minutes time we could each hopefully get Utah's representatives in support of this important Act. There is an easy on-line form that you can "fill-in" with a few sentences about why this is important to you and have e-mailed directly to our Representatives.

CLICK HERE

To get to the online "fill-in" form
It only takes a couple minutes and it will mean so much to me
Thank you

You can read the House Bill HERE

2011-10-03T21:18:00.000-07:00

Did I mention how much I love Make-A-Wish? Well I do, they are amazing and they truly make these kid's wishes come true. They bring a little bit of magic and joy into their lives that have now been consumed with hospitals, doctors, pokes and ouchies and so much more that they shouldn't ever be exposed to at a young age. Today Skyler received more wonderful news from our wish granters. They are going to give him a shopping spree to GameStop to pick out some games for his new game room! First of all, Skyler loves GameStop and loves being able to pick out a new game, so this was the best news he could have heard. This was his face after I told him. He sat like this for what seemed like forever and I was able to go grab the camera and he still had this look on his face.

Thank you Make-A-Wish for making Skyler the HAPPIEST kid in the world today!

2011-09-30T21:31:00.000-07:00

This is a day late but Happy Birthday to the best dad and grandpa in the world!

I love my dad so much and am so grateful to have him in mine and Skyler's life. He has been an amazing father and grandpa. I remember when Skyler was really sick in the PICU I looked forward to having him come up everyday, he somehow made things ok. He would always joke around with the nurses and doctors and was able to make me laugh even though I was going through my worst nightmare. He came up everyday after work even in the horrible weather. He has always been there for us and Im so glad Skyler has a great male figure in his life.

This is my all time favorite picture of my dad. You can see just how much he loves Skyler. Skyler loves him that much right back.

He was always there and even helped with procedures

Skyler loves sitting by and having grandpa hold him. He chose grandpa this day to hold him instead of mommy.

He has helped Skyler with guy stuff that mommy isnt good at

Skyler loves his grandpa!

Love you dad!

HAPPY (late) BIRTHDAY!!!!!

2011-09-28T21:51:00.000-07:00

Notice anything different?

Skyler finally got his hearing aids today! I have been anxiously waiting for today because I knew he would be so much happier (and mamma too) when he was able to hear better. He was excited for today too because he said he would have super sonic hearing powers now. During the appointment our audiologist spent an hour teaching us how to take care of them and how to use them. These little guys cost me ALOT of money so even when we went home I went over with him how to take care of them properly.

For the most part Skyler did really well watching and listening to her explain everything about his new accessories

When she first put them in his ear he wasnt a fan. He cried saying that it hurt him. I dont think it actually hurt I just think that it felt weird having something in his ear.

Once the molds were in she had to measure the tube to fit the actual hearing aid. As you can see he wasnt a fan of this part either. If I saw scissors coming directly toward my face I would be a little scared too though.

After they were put together I was able to practice putting them in his ear. Its harder than it looks because it feels like Im jamming that thing right down his ear canal. Every time I put them in though it gets easier and easier.

This is right after we turned them on for the first time. It was neat to be able to see his sweet face when he could actually hear things again.

I whispered something to him behind his back, something he wouldnt have heard before, but he did and we were all so excited about it. He was too!

On the way home he kept saying "I heard that" to things we were saying that he would have said "huh?" to without the hearing aids. It was so cute because you could tell by the little look on his face that he was happy and so proud of himself

After the hospital we went to Liberty Park to feed the ducks. Skyler loves feeding ducks and we have never gone here before to do it so it was really fun for him.

Those silly ducks and geese went right up to us. This is something Sky loved but freaked me out. I have a thing about birds coming toward me with that hungry I want to eat you look on their faces.

He is rockin those hearing aids!

Im so grateful for these hearing aids and the help they give Skyler. He did such a good job picking the colors and out and he looks awesome with them on! Its so weird because I thought it would take me a little while to get used to seeing him with them on, but even before we left the hospital it was like he has always had them. He got used to them fast too. On the ride home he said he couldnt feel that they were in there anymore. He is also excited to decorate them with stickers she gave us specially for hearing aids. He can chose different ones everyday if he wants or just leave them how they are. We will go back in two weeks for a follow up appointment to see how they are working out for him and to see if they need to make any adjustments. The hearing aid is like a little computer that they program to Skylers hearing. If there are things he still cant hear then they will adjust it then. They will probably do another hearing test in the booth as well.

Today was a good day.

2011-09-24T21:59:00.000-07:00

Look who came to see Skyler yesterday!

The one and only Chuck E Cheese and his girlfriend came and knocked on the door to tell Skyler that the wishing wizard granted his wish for his very own game room. This has been in the works for awhile but they wanted to wait to tell him until they figured out exactly what they were doing. They wanted to surprise him and tell him in a special way so today they came over to my parents house with Chuck E Cheese. They wouldnt even tell me what they were doing so it was a surprise for me too to open the door and see them. It was really neat and special for Skyler. Skyler was super shy, just like I knew he would be and didnt talk to Chuck E, but as soon as we got home he was saying how cool it was that Chuck E Cheese came to see him and that he was so excited to get his game room. He did give him a high five though when he answered the door. Im so grateful for our amazing wish granters and for what they did yesterday for Skyler. It was fun to finally be able to tell him he is getting his game room and it was even funner that Chuck E Cheese himself and his girlfriend were the ones to tell him! Thank you so much to Make-A-Wish, our awesome wish granters Stephanie and Mandy, Chuck E Cheese, and my mom and dad for making this happen.

Our family with Chuck E Cheese and his girlfriend. Sky is being shy but he told me after he saw this picture that it was so cool that he was standing by him.

These are our amazing wish granters, Stephanie and Mandy. I love them and they are perfect for making Skyler's wish come true!

Chuck E Cheese and his girlfriend standing in Skyler's soon to be game room. We were going to turn my mom and dads garage into his game room due to the fact that we cant do it in my house because we are just renting it, but my mom and dad were so sweet and let us use the family room downstairs for Skyler's game room. They said since the room was built for us that we could still use it for Skyler. My mom and dad are amazing, I dont know where I would be without them. They have been there for me and Skyler 100% and have basically given up their last year to help us. Love you mom and dad! Thank you so much for letting us use this space for his game room.

Dont you just love the walls? My mom and sister painted them red and blue to make it bright and fun and look more like a fun game room.

Skyler would not go for any hugs...

and was so shy around them. He still wont talk to anyone besides family but he loved it and talked all about it when we got home.

Dont worry, Chuck E Cheese still got hugs from Skylers cousins. This is cutie Haven.

These are some of Skylers cousins, he loves these girls like they were his sisters. They knew about his game room surprise but were really good at keeping the secret.

Chuck E Cheese waving good bye!

His girlfriend waving goodbye...

We are so excited to get Skyler's game room started and to show him the finished product. His wish granters have some great ideas for it and I cant wait until it is done and Skyler can have his very own awesome game room. I cant think of anything else that would be more perfect for him!

2011-09-22T22:01:00.000-07:00

Skyler has been doing so well. He continues to be such a happy little boy and makes me laugh and smile everyday. He has been eating wonderfully and has actually put on a little more weight. He now has a little meat on his legs and bum and doesnt look like a starving child anymore. If you didnt know he was battling cancer you wouldnt be able to tell at all just by looking at him. He looks SO good. He also has a heart of gold and keeps telling me all the time that he thinks Im the best mommy he has ever had. It melts my heart everytime.

These past couple of weeks have been really weird for me though because I keep thinking Im forgetting something or think that we need to be somewhere. Im so used to driving up to the hospital everyday that not having to has thrown me for a loop. We have stopped his meropenem so I only have to hook him up to an IV med once a day, which is really weird also. I keep waking up in the middle of the night and panic thinking I forgot to hook him up but then remember I dont have to. Its also weird for Skyler too. He keeps asking me "Uh mom, arent you supposed to start my infusion now?" Its so nice to be able to tell me no and to hear him say "Sweet!"

One thing that has been super frustrating these past couple of weeks is that I have started having really bad anxiety attacks. They started out just when Im driving but now they happen when Im at the store too. They have become more and more frequent and its been so hard getting anything done. I have no idea whats triggering them because I love driving and I love getting out and going to the stores. I physically get really sick and feel like I have to pass out. I have always been anxious when Im around big crowds but I have never experienced anything like this before. I know I have been under alot of stress and havent gotten enough sleep but this is the best Skyler has been since diagnosis and we are finally in a good spot so Im really confused at whats causing them. I only bring this up because I want to share how great of a little caretaker Skyler has been for me. He knows when I am having them because I either have to pull over or turn right around and go home. The other day when I had a bad one he said "Mom Im so so sorry you are sick, I wish I could take it away from you." He also told me to go lay down and then went and got me his most comfy blanket and put it over me. He also went and got me a drink of ice water and a straw and also a Popsicle because he said those things help him feel better so they will make me feel better too. Then he said "Mom I hope you feel better soon because you deserve it." He is the sweetest little boy and has taken such good care of me. I am the luckiest mommy in the world to have him as my son. He knows all too well about being sick so he is very sympathetic and compassionate to those that are sick too. Whenever he sees a picture of his cancer buddies getting chemo or sick in ICS he says he wishes that he could make them better. He knows more than a five year old should ever have to.

2011-09-17T18:32:00.000-07:00

Today we were able to go to an amazing fundraiser for childhood cancer. A fellow cancer mom, Kristin, put together a huge lemonade stand (Alex's Lemonade Stand) in honor of her daughter Brinley who is a cancer survivor and other children who have fought, are fighting, and will fight this horrible disease. This woman is amazing and I look up to her so much. The event was incredible and it was fun to take Skyler and to see other moms and their cancer fighting cuties. Its amazing the bond we have now that we have entered this world. Some moms I have only met online but we are connected in a way that makes it seem like I have known them forever. Today was Sweet Brinleys Grand Stand, but there have been other lemonade stands held under her stand all over the country the past week or two. Alex's Lemonade Stand started out by a little girl named Alex who held lemonade stands to help her parents with their medical bills. Alex has now earned her angel wings but her parents have kept this going and it is now a national foundation that helps out little kiddos like Skyler.

This is the section where they had stars with our little heros names on them. It was so sweet and it made me emotional seeing the angel stars with the kids who have lost their battle with cancer and now have their wings.

I love this...

Skyler's star. My hero.

Kristin made this beautiful picture of some of our little cancer cuties

Skyler with his yummy cup of lemonade!

Skyler loves fish ponds so it was awesome that they had one there.

I love this picture. The girl with the cute pig tails is Brinley. I love this girl, she is so stinkin cute!

This is Brinley trying to give Skyler a hug. He was not having it as you can tell. He is so shy.

They also had a big bounce house slide too. Even though it scared me to death even thinking of letting him go down that slide, I knew he would love it so I had him go down with me. My amazing friend and fellow cancer mom Jodi knew what a big deal it was that he was going down it so she had everyone get off and let me and Skyler go down. Thank you Jodi! My mom who was recording it was in tears because she also knew that this was a big deal for us. I was almost in tears too as I heard him giggle and then seeing that big smile on his face.

You did an amazing thing today Kristin, thank you!

2011-09-16T11:18:00.000-07:00

Skyler did so much better yesterday and is doing good this morning as well. The other night be layed in bed for hours trying to fall asleep but couldnt due to the nausea and a bad headache. Oxycodone and zofran didnt touch either, but yesterday he woke up feeling great and had a good day. Grandma Kathy was able to come over and play too so that made his day better as well.

They tried flying kites...

Skyler had a hard time flying his kite because it wasnt windy enough and he couldnt really run with it so this is how he ended up "flying" his kite. This makes me smile, he was just as happy as can be just flying it this way.

Another cancer mom posted this quote and I think its so true.

"Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere and yet, they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light." -Author unkown

2011-09-14T21:24:00.000-07:00

Today has been a rough day for me as I have had to say goodbye to the happiest kid in the world and say hello the the chemo induced vomiting and grumpiness. You can definitely tell that there is chemo flowing through Skylers body right now. He has been really whiny today and is really sick tonight. I know he hates that he is grumpy but he just cant help it right now because he feels awful. I was really dreading this and was hoping it wouldn't happen but the chemo is helping keep the bad guys away so I cant be too mad at it. Right now Im sitting with him in his bed while he holds his "barf cup" up to his face. He is saying "Im just so mad mommy, I dont like this" It breaks my heart. This day is definitely an I HATE CANCER DAY.

Sick little boy tonight. We dont have barf buckets anymore so he uses plastic cups that way we can just throw it away when he is done instead of washing out the bucket.

He got sick of holding it so he just stuck it to his face. Kinda funny yet sad at the same time.

I know this is Childhood Cancer Awareness Month and I will continue until the day that I die to try and raise awareness and find a cure for childhood cancer, but yesterday I learned about a 14 year old girl that is trying to raise awareness for Mitochondrial disease, a disease which her 2 year old brother is battling. When I read this email I was touched because I know how devastating this disease can be because my friends little girl actually passed away this year from it. I was so privileged to meet this little girl when she came up to visit Skyler when he was in ICS. I immediately fell in love with sweet Maggie and was devastated to learn of her death. Mito is a progressive disease and just like childhood cancer it doesnt have a cure, it also takes lives of sweet innocent little children like cancer does. It is not rare, but is rarely heard of. I was so touched by this 14 year old girl named Delaney and what she is doing for her brother. I can relate to the helplessness she must be feeling because I have felt it when watching Skyler suffer and know that there was nothing I could do to make him better and to take away his pain. She has started a Face Book page to raise awareness and is trying to get people to like her page and to learn about Mito.

If you are on FB you can visit her page here Http://www.Facebook.com/wishgrantedproject

Also here is a picture of sweet Maggie who was taken from this earth and her mothers arms far too early from this disease.

2011-09-12T23:43:00.000-07:00

Today was Skyler's very first maintenance appointment. We were there bright and early and were able to talk to our oncologist about what will happen in maintenance. There will be three month cycles and everytime he goes in he will receive Vincristine in his line, and he will also get an LP the first two months but not on the third month. Since he is high risk he gets LP's more than a standard or low risk ALL patient. He will also be getting the chemo 6-MP at home every night and Methotrexate once a week except for the week he will be getting it in his spine. I thought today was going to be a longer day because with an LP it usually is, but we were in and out within three hours! This is by far the shortest clinic visit we have had yet. The best part was scheduling our next appointment for a month out. It was so weird, but I can definitely get used to this. With Skyler being Skyler though Im sure we will be in there more often but its nice to know that if everything goes right we dont have to be. I pray with everything in me that maintenance for Skyler will go how it is supposed to and he will be able to get some normalcy in his life. These past couple of weeks off chemo he has been the HAPPIEST kid in the world. He wakes up smiling and laughing and happy and goes to bed a smiling happy kid. He has also gotten his appetite back (I think because food actually tastes normal again without all that harsh poison messing up his tastebuds) and his weight went from 16.1 kilos to 17.1 today. It has been so wonderful and you can just tell he feels so good both physically and emotionally. I really want him to keep feeling this way, I want him to be happy and feel good, not just for a few weeks I want him to feel good from now on.

Here is one of the docs feeling his liver and making sure everything looks good. Skyler's belly is still bigger than normal which has been worrying me but his liver doesnt feel too big so they are just going to watch it. Look at all that hair! It has grown so fast. Even though its fun to see him with hair agian I do miss his soft little bald head. Its crazy how you become so attached to something that once seemed so weird and not right for a little child.

Here he is getting his Vincristine. Its just a push so its so much faster than having it run on a pump. Ive had very mixed feelings about him starting chemo again today. On one hand I get very nervous with him being off chemo because I want those "good guys" in there to make sure they are keeping the "bad guys" away, but on the other hand he has felt SO GOOD not having it flowing through his veins and I know as Im watching it go in that this stuff is going to make my boy feel sick again. I very much have a love hate relationship with this stuff. Its also not fun seeing the nurse have to lay a pad over Skyler and drape himself with a gown and heavy duty gloves in case anything spills on him, but at the same time pushing it directly into Skylers heart. Even though I know this stuff is going to help keep my son alive it still gives me a sick feeling.

This is Sky just waking up from his LP. He really wanted cheetos and six saltine crackers. He was so hungry this morning so right when he woke up thats the first thing he asked for. He did really well today with his sleeping medicine and Im so proud of him. Im very proud of him for making it this far! Love you Skyler!

2011-09-10T21:57:00.000-07:00

This is just going to be a quick post because I thought this was hilarious. I was in my bedroom and I hear Skyler say "Mom Im ready for bed!" As I walk down the hallway I see him walking to his bed with these in his arms.....

Yes, that is an entire bag of oreos and four fruit leathers! His excuse which he said in a very serious voice was "Im just trying to get my weight up silly goose" Haha... yes I did let him take one oreo to bed, silly boy

2011-09-09T23:18:00.000-07:00

Today has been a busy and fun day. First we had our home health nurse come draw labs to see if Skyler made counts to start his first maintenance appointment, and all of his counts are great! I was expecting them to be good because of how well he looks and how happy he is. His ANC is 3.4 which is great. His platelets are 218, a big jump from 36 last week. His hematocrit was a whopping 38! He did get a unit of blood last week but this is the highest I can ever remember it being. He will go to clinic on Monday to officially start maintenance. He will get a back poke to put chemo in his spine, he will get vincristine and he will also start back up on his chemo 6MP that he will take at home everyday along with a Methotrexate pill he will take once a week.

We also had a very special visitor today. Daphne one of Skylers cancer buddies came and gave Skyler a present and also played. Skyler loves Daphne! She is one of the sweetest girls and he always talks about his cancer friend Daphne. He was so excited that she was coming to our house and was even more excited that she stayed and played. It was really good to sit and talk with her mom too. She is amazing and its always nice to be able to talk to someone who "gets it" and knows what Im talking about without having to explain what things mean. You learn so much cancer lingo that sometimes I forget that people have no idea what Im talking about when I talk about his ANC or crit.

Next we had Skylers physical therapist come and work with him a little. He is still so stiff in his feet and weak that he compensates in his walking and still walks different. He has been eating better and I think has gained a couple pounds so that will help with his walking as he gets stronger but I also really need to work hard on stretching his feet and legs. Its hard to do it for too long though because it still causes him alot of pain. His endurance is getting better though which is really good. He can walk farther now without tiring as fast.

We also had some people over to interview me and Skyler who are working on a cancer documentary. I was expecting the guy to bring a notepad to jot down notes or something but he showed up with actual camera equipment and filmed me. (I guess I probably should have dressed up more) I get super nervous with this stuff and am not the best at talking on the spot, but they were really nice and the documentary is going to be great so that made it easier. It was fun being able to talk with them and get their take on the cancer world. Im grateful that they were so nice in listening about our cancer journey so far.

2011-09-05T20:04:00.000-07:00

Even though this break hasnt been what I had imagined due to needing a unit of blood and having to hook him up to his Meropenem throughout the day and night, we still have been able to get out and do some fun things that he has been wanting to do. Its been so nice having him feel good and to be able to say yes to more things. He is also so happy all the time now and has been so cute. Its been wonderful!!

Our first big outing was to the movie theater to see SpyKids. Skyler loves going to movies and loves SpyKids. He says when he grows up he wants to be one of the guys that makes video games but on Tuesdays and Thursdays he wants to be a spy. I took him during the day when all the kids were in school and lucky for us we were the only ones in the theater. He got a big bucket of popcorn and licorice and really enjoyed the movie. This movie was in 4D meaning it had smells. He had a card full of numbers and when a number flashed on the screen he would scratch it and sniff it and it would smell like the thing on the screen. He thought it was awesome! My favorite part about the movie was the main boy spy kid had hearing aids and they were blue just like Skyler picked out. It was just the right timing to see this because Skyler should be getting his within the next couple of weeks.

We also went to the Aquarium. He loved it because he loves fish. Here he is with a small shark behind him

This was my favorite part...the penguins! Skyler thought they were so cute and funny and kept laughing at them

Another favorite part of mine was watching him wave to all the fishies. So cute!

I was even brave enough to take him out to eat. Even though I was secretly having a panic attack I took him into eat at The Pizza Factory. It wasnt really busy which made it a little easier for me. He loved the giant bread sticks they have there.

We went mini golfing again too. Grandpa and Ty came too and he had so much fun. For Skylers sake we reversed it and whoever gets the most points wins. Guess who won? Skyler!

Today we went with my dad to the Hill Aerospace Museum to look at all the big jets. Notice that he isnt wearing a mask inside! Im getting braver and braver and it feels good to be somewhat normal again.

I just love this kiddo!!

This was our favorite plane. It was huge!

2011-09-03T17:59:00.000-07:00

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH!

On August 17th 2010 Skyler was diagnosed with Acute Lymphoblastic Leukemia. When Skyler is finally done with treatments it will have been over 4 years. Thats 4 years of his life that he will never get back and 4 years of his life that will take things from him that he will never get back. He will be living with side effects from this for the rest of his life.

Many of you know that pink is the color for breast cancer. But did you know that GOLD is the color for childhood cancer? You see pink ribbons everywhere in the stores and on TV, but where is the GOLD? Lets give our children a voice, wear gold. Parents of childhood cancer victims hope that their children live long enough to some day be at risk for breast cancer. Another cancer mom posted this and its so true.
Breast cancer awareness supporters- Looking for a great way to gather more people to your cause? Support childhood cancer awareness. Once we find a cure, some of our kids are bound to get breast cancer. And they'll already be great at fighting cancer and bringing awareness. They'll be like the navy seals of cancer fighters. Support childhood cancer awareness to support breast cancer awareness.
By no means am I saying that we should stop supporting other cancers but I am saying that one day I want to see as much gold as I see pink.

Every year childhood cancer kills more children than asthma, diabetes, cystic fibrosis, congenital anomalies, AND pediatric AIDS...COMBINED!! On average, 7 children die from cancer each day. That means that this month alone 210 U.S. children will die from cancer. I have seen this first hand as some of Skylers cancer buddies have already lost their fight.

The incidence of children’s cancer has increased 0.6% each year since 1975. That’s a total of 21% in the last 36 years. Unfortunately, since the 60’s there has only been one new drug approved for use in treating childhood cancer - that was in the 80’s and it’s a drug used only for relapsed leukemia. The one thing that has changed is the dosages of the toxins that kids receive - they keep increasing (which means that the side effects increase as well.

Also Childhood Cancers are the least funded cancers. It just doesnt seem right that our sweet innocent children that we would do anything for are getting the least amount of funds to find a cure for this devastating disease. PLEASE help me spread the word so no child has to go through this:

or this...

I know that if we all work together we can give these children a voice and one day find them a cure!
SUPPORT CHILDHOOD CANCER AWARENESS

You can visit these sites for info or to donate towards childhood cancer research:
http://www.curesearch.org/ http://www.alexslemonade.org/ http://www.curechildhoodcancer.ning.com/

2011-09-01T16:56:00.000-07:00

Im too tired to say much other than the scan was clear, fevers are getting worse and back on Meropenem.

2011-08-31T22:11:00.000-07:00

As I mentioned in an earlier post Skyler is still having fevers. The week before we were admitted last they put him back on IV meropenem and for that whole week at home he was fever free. Once we were admitted they stopped it and low and behold they came back that day. It has everyone even more confused because obviously the meropenem was treating something but they have no clue what. Still, every culture they have drawn from his line has come back negative and nothing has shown up on scans. His fevers are gradually getting more frequent and higher again. I have talked to numerous oncologists and the Infectious Disease teams that have all worked so closely with Skyler and they all flat out told me they just dont know what is going on with him or where to go from here and they have basically left the decision of what to do next up to me. Its not a good feeling when the docs throw their hands up in the air and say lets leave the decision up to a mom with no medical background. Its just not supposed to work that way. They are supposed to have all the answers and make everything better...ya right I wish. I have been very much involved with making decisions when it comes to Skylers care but this is different. One of the options that was thrown around was to do a PET scan because that is basically the only test they havent run on him yet and it will show more than the white cell scan. They mostly use this to detect tumors but they said it can also be helpful in seeing areas that may light up indicating infection in a certain area on Skyler. After much debate on this I decided to go ahead with it. I dont like the idea of him getting more exposure to radiation, but its basically our last option at this point and I want to be able to say that I did everything in my power to find out whats wrong with him. I hate seeing him suffer everyday from these miserable fevers. Plus if everything looks ok then I would be a little less worried that there is something big we are missing. Also I have been worried lately about his lump on his jaw bone because its growing again so I am curious to see if anything lights up in that area. If you dont remember, a couple months before Skyler was diagnosed with Leukemia he underwent two surgeries to remove a mass on his jaw bone to biopsy. The first surgery they removed alot of it and with our luck the tech threw away the sample before it got to pathology so they had to repeat the whole surgery because of this mistake. This time because the mass was intertwined around his nerves and they had removed a big chunk that wasnt as close in the previous surgery, they nicked a nerve causing him to lose function on that side of his mouth. Within a couple months he regained the use of his lip, but lately he is losing it again. I think it has started to grow again and is pressing on a nerve. They called it a lipofibromatosis which is a mass of cells that will just keep growing back. He never had a follow up appointment on this because he was diagnosed with cancer before we got a chance to go back.

The PET scan was scheduled for today and it was a lot more stressful and complicated than I thought it was going to be. First of all he had to be sedated for this because it is an hour long and he had to lay completely still. I know he did his other hour long scan not sedated but this machine is alot noisier and it was more important they he hold completely still. Second they had to inject him with some sort of molecule (cant remember the name) and let that sit in his body for an hour. They also had to give him contrast as well which is something I am not a fan of. Also they couldnt use his dialysis catheter for this so they had to start an IV in his hand. He thought he was done with pokes so this was VERY upsetting for him. And the last thing I wasnt a fan of was since they dont do too many PET scans at PCMC they cant afford to buy one for the hospital, so once a week a trailer (yes I said a trailer) pulls up outside the hospital with the scanner in it. Ghetto I know, I thought the same thing. So to say I was completely stressed out, overwhelmed and worried for my son was an understatement. At the last second I was really second guessing this scan but I felt it needed to be done, if we didnt do this we would always be wondering if it would have given us an answer.

To sedate him they went with a drug they havent used before because it doesnt drop his heart rate like the other one would because he now as what they call a regular irregular heartbeat. This meaning his heart rate is very irregular because it will speed up and they slow down, but that irregular heartbeat is doing it in a regular pattern if that makes any sense. These last couple of admissions whenever he was on the monitor at night his heart rate would drop down into the low 30s and then jump up to the high 180s. They dont know if that was his actual heart rate or just the monitor not picking it up because his heart rate is so different, so the NP today played it safe and went with this new drug. He did really well with it but half way through he started to wake up a little and cry so they gave him versed as well. The half life on this new drug is alot longer so I have had a high little man on my hands today. They wont get the results back for a couple of days so its another waiting game until then. Right now he is sleeping off the medicine and is starting to spike another fever. Please pray we can get some answers so Skyler can start feeling better. Thank you.

Wiping away his big crocodile tears after getting his IV. I felt so bad for him because he was so excited to be done with the hard stuff now that he is in maintenance.

This is the stuff that they injected into him.

This is the trailer. Its not as bad as what I was envisioning in my head when they told me they just pulled up a trailer.

Putting oxygen on him

I dont like seeing him lay there like that. I just want to pick him up and cuddle him everytime and tell him everything is going to be ok, but I cant. I had to leave him in that room all by himself on that little table. Please let this be the last time I have to do this. You would think after doing this so much that it would get easier, it doesnt, it gets harder each time.

Getting the scanner ready

This is the tech controlling everything. You can see all the images on that screen. Its crazy seeing my son like that.

This is blurry but its because I had to look at him through the glass window because no one could be in there with him. To make sure he was ok they had to sit and watch that monitor that is attached to him through the window. And since we were outside they told me they had to notify the ER to let them know what we were doing because if something went wrong they couldnt call a code they would have to rush him into the ER. That didnt make me feel too great

This video is of Skyler when he was just waking up and wanting a cracker. He is so drugged up in this video that its hilarious! Its kinda long but the beginning and ending is so funny

http://www.youtube.com/watch?v=a2a6iwRJZbo

2011-08-29T22:10:00.000-07:00

Saturday was a special day for us and a day I have been looking forward to for months. Children and the Earth along with Hogs for Humanity and the L.E.A held a motorcycle rally and Skyler was one of two children that they held this for. The other boy has had 4 open heart surgeries and a stroke. The ride was called Hogs for Humanity Motorcycle Rally. Everyone met at Brewskies in Ogden and then took the scenic route all the way to Lucky 13 in SLC. These people are amazing! I was so privilege just to be there and take part in this amazing event, let alone have some of the donations go towards Skyler. I met some of the most kind hearted and sweet people there and it was so cool to see all the motorcycles. One thing that was very special to me was my uncle and two aunts rode their bikes down to ride with everyone. I wasnt planning on riding at all but my uncle Richard asked if I wanted to go with him. I of course said yes. I thought I would be really scared riding on a motorcycle but I wasnt scared at all, it was just really fun and the view was awesome. It was really cool to look ahead and behind me and see all those motorcycles and it was even cooler that they were all their to support us. Also I thought it was really neat that when we hit an intersection one of the bikers would stop their bike in the middle to block traffic so we could all go through and stay together. Let me tell you I am anything but cool but being able to ride along side a bunch of motorcycles like that made me think I was cool for a couple hours...(haha ya I wish). I am so grateful that my uncle asked me to ride with him so I could experience that. After the ride everyone met at Lucky 13 where they had lunch and a raffle. I wasnt going to take Skyler at first so I could go around and talk to and thank everyone but he really wanted to see the motorcycles so I let him come. I was still pretty nervous about him being around alot of people so we stayed back and I wasnt really able to talk to everyone like I wanted but I want everyone to know just how grateful I am. I am so lucky to have been able to meet such amazing people and be on the receiving end of such great service. I dont know how to put into words just how thankful I am and how much this means to me. Again I was reminded of how good people can be and how I want to be. I am so grateful to everyone who took the time to put this together and make this possible. I would love one day to be apart of an organization that does so much good for others and to pay it forward!!

This is a good lookin view

This is where they could register inside Brewskies.

Some of the awesome people that were there and helped with this amazing event!

These are the kids of my sweet neighbor that helped make this possible for Skyler. Skyler wasnt too happy about me taking so many pictures of him. I think if he could smash my camera so I could never take pictures again he would :)

More wonderful people that were there. The girl with the bandanna on is actually my 3rd grade teachers daughter. This was really cool because Mrs. Dewey was my favorite teacher ever!

This is my aunt Patti. Isnt she cool? I love her and am so glad she came out to support us.

My dad with my uncle Richard who I rode with and his wife Lori who also rode on her own bike. Man I love my family!

This is me finding out I get to go too!

My mom and dad got crafts for Skyler to do while they waited for us to get back

Thank you from the bottom of my heart to everyone who came out and who made this event possible!

2011-08-25T22:46:00.000-07:00

This picture makes my heart happy! Farewell ICS and farewell to your giant bags of chemo!

We hit a HUGE milestone today. Today Skyler finished up his very last high dose chemo and is officially in maintenance! We have waited over a year to say these words. Finally there is a light at the end of the tunnel. For Skylers type of Leukemia, maintenance is usually hit by the sixth month but we all know that Skyler doesnt follow the rule book on how to be sick. It may have taken us over a year to get here but we are here and thats all that matters. Maintenance means the end of the harsh chemo and the beginning of a much easier course of treatment. For the next three years Skyler will take oral chemo at home everyday and will only have to go into clinic once a month for chemo through his line. Also normally he would get his back poke once every three months but since he is high risk, meaning he presented with a very high white count when he was diagnosed, he will get his back pokes every time he goes in but has the third month off. They also try and keep his ANC from getting too low so he will be able to start doing more things and live somewhat of a more "normal" life. What is normal anymore anyway? I dont think our lives will ever be the same "normal" it once was. We will just have to find our new normal because we will still be doing this for the next three years. I cant believe that when we are finally done with treatment it will be over 4 years. Skyler will be eight years old...crazy.

I am so excited for Skyler and he is so excited too. On the way home he kept singing "Skyler is in maintenance, Skyler is in maintenance!" It was so cute and I may have gotten a little teary eyed. Even though Skyler is in maintenance now we still have to be careful because something as little as a cold can turn into something dangerous for him. But since he isnt getting such harsh chemo anymore he should start feeling so much better and get stronger everyday. Right now we have a two week break from all chemo before he goes into clinic. Im very much looking forward to this time off. I still cant believe that this is real and we are finally here. Its been such a long hard road for Skyler so far and I hope maintenance treats him well. He definitely deserves it. He is still having fevers that no one can figure out an answer to but I will post more about that later, for today is a day of celebration. I just cant say this enough SKYLER I AM THE LUCKIEST MOMMY IN THE WORLD TO HAVE SUCH AN AMAZING, STRONG, COURAGEOUS, SWEET, FUNNY AND PERFECT SON AS YOU. YOU ARE MY LIGHT, MY WORLD AND I AM SO PROUD OF YOU. I LOVE YOU TO INFINITY AND BEYOND!

On the way out of the parking garage at Primarys when we were headed home I heard Skyler singing this so I turned my phone on. So cute. Also at the end of the video you can see a little of why Sky needs hearing aids...he says what a million times to everything I say. Its dark at the beginning because we were driving out of the garage

2011-08-22T13:56:00.000-07:00

Today is a bittersweet day for me. The good part is that today is the start of Skylers LAST round of inpatient chemo before maintenance! The sad part of today is that instead of starting his first day of Kindergarten today, Skyler is at a hospital getting large amounts of chemotherapy pumped into his little body. This is not what I had envisioned for my little boy when he was old enough to start Kindergarten. I know I said a couple months ago that Skyler would be able to go to school this year but after ALOT of thought and debate I have decided to hold him back a year. I know it was the right decision but its still hard. I made this decision based on the fact that he still isnt in maintenance yet and we are still battling these unknown fevers. He still wouldnt be able to go the full year anyway because I would keep him home during flu and respiratory season. Also, he has basically lived this past year in a bubble so his social skills are a little behind, and I want him to have this year to let his body heal from the very traumatic things it has gone through. My goal is to get him back out into the real world and to have fun and play and socialize with other kids. It will also give him a year to get his walking back where it was so he can keep up with the other kids. Also, next year he would be the oldest in his class instead of the youngest and I heard that boys tend to do better when they are in the older part of the class. I feel good about this decision even though it was a tough choice to make.

Getting chemo today with a smile on his facce

On Saturday I really wanted to do something fun with Skyler before we were admitted this week so I took him mini golfing. He absolutely LOVED it! He usually tires very easily and cant walk very far especially in the heat that he has become so sensitive to, but he walked the whole way. Even up and down big hills and curbs. This was the best physical therapy for him. I know he pushed himself harder because he was thoroughly enjoying himself. He is actually a pretty good golfer, alot better than mommy who hit hers into the water. Grandma, grandpa and uncle Ty were able to come too which made it all the more fun for him, especially because his best buddy Ty was there. It was so fun to get out and forget about cancer for the night and to see his smiles and laughs!

(Sorry in advance about the loud wahoo, sometimes I forget that Im recording haha)