Thursday, May 31, 2012

I'm sure I have bugged everyone enough about CureSearch for the month, but I'm super excited about this and want to share with everybody.  To help raise money for our team this year
 we’re partnering with Sara Talbot, an amazing local Thirty-One sales consultant.  Thirty-One offers a huge variety of amazing, high-quality bags, totes and organizers.   Sara will be donating 25% of all sales completed between June 1-15, 2012.  This is a great opportunity to treat yourself or somebody you know while contributing to our special cause at the same time!  I have one of these bags myself and have fallen in love with it.  If you haven't heard of Thirty-One before please go and check it out, its such fun stuff. My favorite part is that you can personalize almost anything which makes it that much more special.  These would also be great gifts.  Skyler starts kindergarten in July and is so excited because I told him he could get one of the backpacks with his name on it! 


Here are some important details regarding the ordering process:



·         All orders must be received by 12:00 noon on June 15th

·         All orders must be placed online by following these steps:

1.       Visit www.mythirtyone.com/99996

2.       Click on the ‘My Parties’ tab

3.       Choose ‘Shop Now’ under the CureSearch Fundraiser event

·         The preferred shipping method for this event is to have items shipped directly to your home.  This will incur an additional shipping charge of $4 per order.  OR, If you live close enough and make prior arrangements, you can choose the ‘Ship to Hostess’ option and pick up your items at my home at no additional shipping charge.



A few extra perks!

·         Personalized monogramming is available on most items for only $7



·         Thirty-One’s special for the month of June is:

For every $35 you spend, get a Large Utility Tote for only $10!  This is one of their most popular items and its uses are just endless. (The price adjustment will be made automatically during your online order)



·         For anybody else who may want to host their own in-home party with Thirty-One and help Skyler raise even more money, contact Sara today.  For each party booked before July 31, Sara will be donating 10% or all sales to CureSearch!  Plus, you’ll earn all the amazing hostess benefits, which include free and half price items!



For more information or to book a party, contact Sara or me today! 



801-755-6118






Wednesday, May 30, 2012

This little girl needs your prayers today.  Millie was one of the first little girls that I met and followed her blog when Skyler was diagnosed.  At the beginning of the year she was done with treatment and celebrated with friends and family because she was DONE WITH CHEMO.  A few days later they found out she had relapsed and that she needed a bone marrow transplant.  She was supposed to be done with her transplant already but instead had to do another round of chemo because they hadn't gotten rid of all the Leukemic cells yet.  Tomorrow she will have a bone marrow aspirate to see if she is in remission and can go ahead with her transplant.  She needs all the prayers she can get.  She is the sweetest most beautiful little girl and her smile just lights up a room.  Love you Millie!!!!

Monday, May 28, 2012

On Friday Skyler and I had the wonderful opportunity to watch the Thunderbirds air show at Hill Air Force Base with Make-A-Wish.  I was really excited for this mostly because men in uniform aren't so bad to look at..haha.  I have never seen the air show before so I didn't know what a treat we were in for.  We all met in a parking lot and then were transported onto the base by bus.  They had special seating for us right up close to everything.  It was truly one of the coolest things I have ever seen!  They even pinned a Thunderbirds pin on each of the wish kids and gave them each a cool little airplane.  Skyler was in heaven and said this was the bestest day ever!  After the show was over the pilots and his crew came over and signed autographs for the kids.  They were all so nice and it was amazing to see all the kids faces light up.  Since Skyler is so shy around new people I didn't think he would want to go up and get autographs, but he walked up to each pilot all by himself and stood with his book out until they signed it.  It was so funny and super cute.  I am so grateful for the opportunity we had to go to the air show and for the kindness everyone showed us.  Make-A-Wish sure knows how to put smiles on kids faces!!  And the Air Force sure knows how to put a smile on mine :)

This was on the bus ride up there.  It was his very first time on a bus so he was really excited.


                    Watching the AMAZING air show!!


I didn't even think about bringing him sunglasses so here he is sporting mine and his good looking ear plugs.  It was so loud.


        Here he is getting his pin.  He is so proud of that thing.




I absolutely LOVE this picture!  His smile is priceless and he was so excited to be able to get his picture taken with him.  He hates getting his picture taken so you can tell just how cool he thought this was.





One of the neatest things for me was learning that one of the pilots was a girl.  I think that is the coolest thing.





Aside from the air show Skyler has had a rough week.  He is having alot of major headaches and leg pain.  He has also been nauseous on and off.  I have had to give him pain medicine around the clock and he usually wakes up needing a barf bucket.  Last night I even had to carry him into the bathroom because he couldnt walk by himself.  I just dont know what to make of it.  He isnt fevering so I havent had to take him in, but Im getting really worried.  I know vincristine can cause leg pain but that doesnt explain the headaches.  I hope its just some sort of virus and things will go back to normal pretty soon.  Its really hard seeing him sick and in so much pain.  He told me today "Mommy I wish cancer didnt even exist."  I cannot tell you how much I wish that also. 

Today we were riding in the car on the way to pick up some donations for our garage sale and I was explaining to him about why we are doing the walk and why the money we raise is going to go to the scientist to help find a cure for childhood cancer.  After I was done he said to me "I think I should write the scientists a note and say..Are you done yet?  It was so funny yet sad at the same time.  I wish they were done finding a cure also, and I so badly wish it had been before Skyler knew so personally the meaning of pain and suffering. 

Tuesday, May 22, 2012

Today was another clinic visit, and to Skyler's delight he got to have a back poke.  Crazy kid, I cant believe how excited he gets for his LP's now.  He just has so much fun playing with Lindsey (the child life specialist) and the helicopter in the RTU.  I am just an onlooker now in RTU while Skyler skips in the room, hops on the bed, and plays with his helicopter while being put out with the "sleepy medicine."  He is such a different kid now and its crazy to think that he once had to have me hold him tight and bury his head on my shoulder while falling asleep so he wouldn't have to look at anyone.  I also remember reading other cancer cuties blogs and their mothers telling how their child looked forward to going to clinic.  I never in a million years thought Skyler and I would be the same way, but it happened.  Skyler actually looks forward to it now.  We are so blessed that things are going so well!  Sometimes its still hard to believe that things are going well for us and I'm just waiting for the other foot to drop, but then I just have remind myself to enjoy the moment.  I don't know what the future holds for Skyler, all I can do is be grateful for where we are at now and live in the moment.

All of Skyler's labs looked great today except for his ANC which was way too high at 6.9.  They upped his oral dose of methotrexate to see if we can get it to come down into the right range.  It should be anywhere from .8 to 1.5.  Hopefully next month his ANC will drop, if not then they will up the dose of his 6MP as well.



Also, I have to say a big thank you to Tim Nestoryack and his daughter for running the Ogden marathon while wearing Skyler's shirts.  Tim even gave Skyler his medal he got!  This made Skyler one happy little boy.  He is so proud of that medal and is wearing it all over the place! 

This picture brings tears to my eyes.  I am so very grateful for the love and support Skyler has received.  This journey would have been so much harder without such wonderful and good people to help us through.




          Thank you Tim for bringing this smile to Skyler's face!!

Sunday, May 20, 2012

                             Sometimes I think of cancer as a big tornado.



 It's destructive and deadly and affects everyone in its path.  It doesn't discriminate.  It can destroy and take the lives of young or old, black or white, big or small.  Picture a big tornado coming toward you.  Who would you protect first?  Would you run away and leave the kids to find a way to get out of its path on their own?  Like most people, I know I would do anything and everything to make sure my child was safe first before anything else.  So why is it that we are leaving our children out in the open and in the tornado's path when it comes to finding a cure?  It just doesn't make sense to me and it makes me so sad.  This week I have learned that three of Skyler's cancer buddies have been put on hospice.  One of them actually left this earth this morning and the other two aren't far beyond.  Their bodies are weakening as the cancer takes over.  It just isn't fair.  They should be up and running around and playing like kids should.  The pain their families must be feeling is beyond words and it hurts me knowing that.  It hurts knowing that if we had put more attention on finding a cure for childhood cancers like we do for others, that their lives might have been spared.
Please take a moment to hug your children a little tighter.  There is a mother out there today that doesn't get that opportunity anymore.

Wednesday, May 16, 2012

It's getting closer to that time of year again, our second annual CureSearch Walk!  This year it will be on September 29th in Sugar House park.  Just in time for childhood cancer awareness month.  Last year was our very first CureSearch walk here in Utah and we raised over $70,000!  That's incredible for our first year.  CureSearch is such a wonderful organization and is something I have become very passionate about and has become close to my heart.  I am on the committee this year and it's going to be so much fun. It will be very family friendly and we will have fun things for the kids to do including balloon animals, face painting, a fish pond, games etc.  Each year it is going get bigger and better and Im very grateful and priveledged to be a part of something so amazing!

For those of you who dont know who CureSearch is, they a national non-profit foundation whose mission is to fund and support children's cancer research and provide information and resources to all those affected by children's cancer. CureSearch supports clinical trials research at more than 175 local hospitals across the United States. These hospitals participate in National Cancer Institute sponsored clinical trials conducted by the Children's Oncology Group. Through the CureSearch Investigational Research Initiative, CureSearch also funds basic and translational research that offers the greatest potential to design treatments and improve outcomes for children with difficult-to-treat cancers.

CureSearch raises funds through individuals, special events, corporations, and private foundations. Charitable giving is especially important now, as federal funding for children's cancer research has been flat for the last decade and was reduced by five percent in 2011.

CureSearch also manages the operations center of the Children's Oncology Group, the largest cooperative research entity in the world! With more than 6,000 physicians, nurses and other researchers, COG member hospitals treat 90% of children in the United States with cancer.

I belong to a group of mother's who all have children with cancer and we all have done alot of research on CureSearch.  94% of all funds go toward childhood cancer research and 100% of donations from the walk go straight to finding a cure.  Alot better than the 3% childhood cancers get from other organizations. We have all become very passionate about this organization and would love to have your support again this year.  I have started another team, Team Super Skyler!  I would love to have EVERYONE join our team.  If you live out of state or can't make it to the walk that's ok, you can still register and join our team as a virtual walker.  Anyone under the age of of 15 is free, but make sure to still register them on our team.  My goal this year is to get 50 people on our team, but I know we can get so much more.  How wonderful would it be to have these little cancer heros look around them and see all the many people who love and support them and are cheering them on while they are fighting for their lives?  To join Team Super Skyler or make a donation please go to http://www.curesearchwalk.org/saltlakecity/superskyler

Thank you so much for all your support.  It means so much to me and all the many children and families that this evil beast we call cancer affects.  If you are a member of Facebook I made a page to keep everyone updated on the walk.  http://www.facebook.com/#!/teamsuperskyler


This was our amazing team last year!

                             Skyler and his champion medal






Today was dressing change day.  My mom was able to sit with Sky this time while I changed it so he did alot better. 

 After he was done he thought it would be fun to change grandma's dressing.  He had to do everything just right.


This video is hilarious to me (sorry mom)  Skyler didn't even flinch when I took his dressing off and as you can see its a painful process.  And this is without a tube jammed into her arm!

video

Monday, May 14, 2012

As you all know birthdays are a big deal to me. Growing up my mom always went out of her way to make them very special, so I have tried doing that for Skyler. Birthdays have become even more special to me since Skyler was diagnosed.  Yesterday was Skyler's actual birthday, but since it was Sunday and also Mother's Day we decided to celebrate it on Saturday. Ever since we got Jagger Skyler has been really into puppies and wanted to have a puppy party. We invited his cousins over to Grandma's house for the party. Skyler has celebrated every birthday at grandma and grandpa's house and he didn't want this year to be any different. The one thing he really wanted was another bounce house. It's amazing to me that he can finally jump around again so I just couldn't say no. It makes me so happy to see him jumping around having so much fun with the other kids.


These are the treats we had.  Scooby-doo snacks, whoppers, and coca puffs.  This was my favorite part :)
I looked everywhere for puppy balloons but couldn't find anything so I decided to make my own.  They turned out kinda cute.  We got dog bowls for all the kids (new and clean) and put their names on them and decorated them with puppy stickers.  That's what they ate their treats out of.  For the drinks the kids drank toilet water.  Don't worry it wasn't really toilet water, although a couple of the kids actually thought they were drinking real toilet water.  Sorry parents :)




                                 Each kid got to adopt their own puppy too.  


  This is Skyler's dog bowl.  Can you tell he decorated it himself?


We also played pin the paw on the doggie.  I think I turned Skyler one too many times because he almost ran into that fence.

 We had a puppy pinata too.  Skyler was the first one to hit it and on the first swing he decapitated the puppy!  Kinda funny.  I decided it would be cute to do face painting too.  This was my very first attempt at it.  It was actually pretty fun and it didn't turn out too shabby if I do say so myself.  I cant believe Skyler actually let me paint his face.  He hates anything wet on his face. He makes a cute puppy though!





In the picture above I told everyone to do sad puppy faces.  I guess Skyler didn't get the memo on that one.

 
We also opened presents (I love the face in that picture) and had cake.  Apparently I lost my mind for a minute and forgot to take the cake out of the cardboard box.  The box almost went up in flames.

   HAPPY 6 YEARS TO THE TOUGHEST KID I KNOW!!!!!



For Mother's Day Skyler surprised me with flowers, a card, a balloon, a singing bear, chocolate covered strawberries, a gift certificate to Wingers (his favorite place to eat) and a heart locket.  He sure knows how to make his momma feel special and loved!!  I love you with all my heart Skyler, to infinity and beyond!!





Monday, May 7, 2012

Our blood drive was a HUGE success!  To be honest I was having bad dreams that no one would show up, but we ended up having close to 80 people come which was incredible.  We collected 58 units of blood which will help save up to 116 patients!  We also had 39 people sign up for the national bone marrow registry.  So amazing!  I am completely overwhelmed with gratitude at the love and support that we were shown.  It was one of those days where I thought to myself "Life is GOOD, we are BLESSED!" 

I want to thank each and everyone of you that took the time out of your busy day to come celebrate Skyler's life with us by helping save other's.  I am so blessed to have such wonderful support from so many people.  There were even people who came who were afraid of needles and this was their first time donating, even people I didnt even know.  That seriously means so much to me.  I am sitting here with such a full heart and just cant find the right words to express how grateful I am for everyone.  Thank you just doesn't seem like enough, but THANK YOU!!

                              Here is a glimpse of our day!


These are the wonderful people from Be The Match

 
This cute girl is the one that took the amazing pictures I always use of Skyler when he was bald!





 
This is Nathanael one of Skyler's cancer buddies.  I love this kid so much and he turned six the day before our drive. Birthdays are a big deal in the cancer world.  Happy Birthday Bud!


 
Yup that's me lounging out.  I decided I wanted to see how comfy those chairs are, turns out VERY :)


 
Me, Skyler and my mom sported these shirts.  On the front it said Here's to many more Birthdays...




                      Another strong cancer fighter, McKall!


This is also a fellow cancer family.  I admire this family so much.


Also another cancer buddie!  He has been off treatment for a year.  Way to kick cancer's butt Parker!


We had a bounce house for all the kiddos while their parents were busy giving blood and swabbing cheeks.  Skyler loved having friends to bounce around with.


Signing up for the registry!




                             Thumbs up for saving lives!!


                                A smile on her face while getting poked!




Here is my cute momma.  She helped me put this whole thing together.  I don't know what I would do without her.



                                 The life saving process....


      THANK YOU FOR HELPING MAKE THIS A SUCCESS!