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!!!!!

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.

 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!

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.

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!

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

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.

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!

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

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.