Friday, February 24, 2012

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!

Tuesday, February 21, 2012

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.

Thursday, February 16, 2012

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

Saturday, February 11, 2012

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.

video

Wednesday, February 8, 2012

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.

Monday, February 6, 2012

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!!!