Hope Kids Princess Party

After Camp we stayed in SLC one more day so that we could go to the Princess Ball with Hope Kids.  Abby was a beautiful princess, and Chase was a very handsome Prince Charming.   We had dinner and pictures, and carriage rides, and of course dancing with the princess'.  Abby was loving it and Chase sat by me quietly watching all the girls dance.  I asked him if he wanted to go dance.  He said he just wanted to dance with Ariel.  It was so sweet.  I thought since that was his only request we had to go ask her to dance.  She and Prince Charming danced the night away.  Chase was in heaven and so was Abby.

Abby told me that this is the way that a princess holds her glass!

Camp Hobe

Chase and Abby went to a camp for cancer kids and their siblings.  It was in  the mountains by Tooele and my kids LOVED every minute of it.  This little video sums up how they feel about Camp Hobe.  Abby is the one just to the left of the girl counselor.

They did arts, crafts, music, swimming, lunch, story time, and a whole bunch of other stuff that I learn every day.  I wasn't there with them the whole time so I just have to piece together what they tell me about it.  I do know they had a big swing.  I mean big because they put them in a harness and helmet to go on it.  My kids claim they loved it, but again I didn't see them do it.  This camp is so amazing.  It not only lets those going through cancer know that they are not alone in their fight, but it gives support and love to the siblings.  They are able to go up and be in an environment where the other kids know how they feel.  It is rough to be a cancer kid and also a cancer sibling.  The counselors were so good with the kids.  They are all trained and back ground checked and you know that they really have a huge heart and desire to be there.  They love the kids and make them feel like they are the most important thing in the world.  We will be going back next year for sure!!!  Camp Hobe Rocks!!!

Story Time after a long day playing.  They look like they are almost asleep.

These are all the amazing mom's that I look up to so much.  

 We stayed at a hotel in Tooele the night in between the the two day camps.  We went to a movie and out to dinner with a bunch of mom's and their kids.  It was a blast, and so nice to talk to the other mom's and hear their stories.  Listening to them makes you think twice when you are having a bad day.  We might have it bad because Chase's has cancer, but believe me there is MUCH worse!
My kids were only old enough this year for the two day camps, but next year Abby will be old enough to stay over night all week.  Kinda scary for mom, but I can not imagine her in better hands.  The people there were amazing!!!

This is our little friend Millie.  We stay at her grandparent's guest house when we go up to SLC.

Chase found a Lightening McQueen floaty.  He thought it was so cool.  You can see in this picture that even when he is jumping off the side he is looking down to see Lightening.

This counselor was AWESOME!  He took such good care of Chase.  Abby asked me today if I had his phone number so we could send him a picture of our plant heads that they made.  She wanted to show him how long her grass was getting.

Neither of my kids like loud noises.  Chase took his drum outside to play it where there wasn't so much noise.

This is about the only time Abby didn't have one hand over one ear and the other pressed up against her shoulder while she hit her drum.  We are not a quiet family so I don't get why they hate loud noises.  Abby can even tell you which toilets are going to be too noisy in public restrooms.  She has to leave and then I flush.....my kids are so weird!

My kids LOVED Dayne!!!

Babysitting???

Came to get Mason out of bed one morning and found this.  Is this what our kids have to entertain them?  A phone or some other electronic thingy.  Abby was playing baby movies for him on my phone.  Granted he was loving it and it gave me time to get out of bed and get dressed, but really? 

Summer is Official

We had an awesome and very long spring.  It was so nice to not have HOT weather.  But it is now here.  We had to get the slip n slide out and the Travellers came over.  I know I have said this before, but the kids play so well together.  They had a BLAST!!!

Where's Mason?

This picture was taken the beginning of May also.  I am really trying to get caught up.  Again, couldn't find Mason.  Where did I find him?  Down the hall, in his room, on the bottom shelf of his changing table.  I am having fears that he is going to be my climber.  Anything that is left on the floor, even just a small case of wet wipes, he thinks he needs to be on top of it.  So far none of my kids have been  huge climbers.  He may be my first.  I know the changing table shelf is not high off the ground, but that is the whole point.  He found something that would give him any elevation at all and he climbed on it.

First Fever AHHHH

So our first fever in almost 1 yr.  I am pretty darn proud of Chase (like he has any control over whether or not he gets a fever).  It was as bad as I thought it would be and more.  No one knew what they were doing.  It was on a Sunday (that was even used as an excuse at one point).  I might be mistaken but I thought that hospitals were open 24/7.  I was asked questions about what to do when he was being accessed.  He is supposed to get antibiotics in his system within two hours of getting a fever.  In our case it was more like 5 hours.  Just not okay with me.

So after getting the run around I made a few different phone calls on Monday to see what the heck was wrong.  I did everything just like I was supposed to, but just happened to pick a day that no one experience with this kind of stuff was there.  So next time I will be asking many more questions in the phone call I make before going to the hospital like, "do you know what you are doing?"  I even went above and beyond the my role as a mother and made the home nurse let me access him the next time she came out.  I am going to be prepared next time to do it all myself if I have to.  There was even one point that Chase looked at me and said, "it wont hurt mom?" He could tell that the nurse didn't know what she was doing and it made him nervous.  Anyway, we had a bad first fever so they can only get better from here right?  (maybe we can go another year without one....we can always hope!)

Abby Tee Ball

Abby played tee ball this spring.  She is always so willing to try new things when it come to stuff like this.  Now when I make something new for dinner that is another story.  So she loved tee ball.  Her coach was amazing and was so good with her.  He taught her a lot because going into it she really didn't know much (she has some great parents at home, right???).
By the end of the season she was hitting most of the pitched balls and didn't have to use the tee.  She was quite the player.  And we loved to get out of the house to go to her games every week.

Mason Army Crawls

These pictures were taken the beginning of May.  He is army crawling like a champ now.  He is so fast that I often lose him in the house.  I wish he would answer when I call his name.  I will often find him in the corner of one of the kids rooms playing with toys.  He found Mr. Potato head from Chase's room and was immediately attached.  He found himself a new best friend.  So it made me clean up all the small parts in Chase's room and Abby has way to many to worry about so we keep her door closed.  I thought I was safe after a month of him army crawling around, but now he found the stairs.  He gets up them quick too.  Time to purchase a gate!  I know he knows how to crawl on all fours because when he is on the grass he does it.  But any time he is in the house he is all about the army crawl.  He is going to have some tough arms.

Utah Cancer Fighting Cuties

In this video you will see all of Chase's cancer fighting friends.  Each one of these kids is from Utah.  The mothers of these kids have become my rock.  When I am having a bad day I can vent to them, when we reach milestones that only they know how I feel I can celebrate with them.  It has been my therapy.  I love each and every one of them.  Here is a little video of Chase and his "cancer fighting cuties."  Some of them are still fighting, some have won the battle, some are suffering the late effects of chemo even though the cancer is gone, and some we keep close to our hearts as they fulfill their missions in heaven.  One of the boys in the video passed away while the video was being made.  I know this video is close to home for me, but I can not help but see these sweet faces and cry.  They are all an example to me of how to take what life gives you and make it the best you can.  I have heard stories of those that have passed away and in their final moments they are comforting everyone around them.  They are so strong!  I love them all with all my heart and hope that one day there will be a cure and this "cancer life" will no longer exist.  We will be walking in our CureSearch walk on July 9th with all these amazing people.  I hope that you will join us or at the very least make a donation to help each and every one of these kids.  They DESERVE a cure.

Abby Loses First Tooth

Yes, you can see the permanent tooth coming in behind the one that just fell out.  She wiggled and wiggled it until dad finally decided he needed to pull it out.  In the process she swallowed it...oops.  So she wrote a cute little note to the tooth fairy saying she had swallowed her tooth and put it under her pillow.  She was so excited in the morning when she found a crisp two dollar bill under her pillow.  She was so proud.  You can see her sweet milk mustache in the picture.  This girl drinks milk every hour of the day.  She lost this first tooth back in May (Yes I am way behind).  Since then she has lost the other one and didn't swallow it this time so I think the tooth fairy left her three dollars for leaving her the real thing.  She is growing up way too fast.  I keep telling her not to wiggle her teeth because I don't want them to fall out and then Ashton goes and tells her to wiggle them.  Can't my babies just stay babies???

Clinic 5/13/11 and 6/10/11

Chase had to get a Lumbar Puncture for the month of May so that means that he has to go to Primary Children's for his treatment.  This happens every third month.  So Ashton and I headed north and left Mason and Abby with Grandma and Grandpa Prince.  We left early Thursday so that we could get up there for a Dr. apt that I had up that the university hospital.  After which we headed over the the "barn".  I have mentioned before this is a mansion not a barn, but the barn is bigger than our house.  But somehow the easiest way we have come to refer to where we are staying it the "barn".  Another reason is that the animals are the highlight of our visit.  This time we got there and what to we find?  Oh, just a momma goat out roaming the yard with her two new babies.  They came up to Chase's knee.  They were so cute!  Chase loved them and followed them around for a long time.  They would jump and prance around.  We had a great time playing with them.  Of coarse we went in the barn to see the baby bunnies also.

You can see the cute little goat in the back ground.  They would just hop right up on the wall and then climb down the rocks on the other side.  I forgot how much they can climb.
So clinic went really well in May, it was nice to see everyone up there that we hadn't seen for a few months.  Chase still knew the whole routine and even though it had been a few months since we were up there he knew right where the toys were and he was determined to get the locked cupboard open.  They keep it locked because the toys get cleaned after each child plays with them.  They did the normal chemo and blood draws.  But they also took blood to be tested for an enzyme that Chase may be lacking.  It is an enzyme that would break down the chemo.  If he doesn't have this enzyme then it would explain why he always has such low blood counts.  His ANC is lower than they would hope it would be while in maintenace.  They want it to be between 1000-1500 and he is usually between 500-800.  So he is only taking 50% of all his home chemo meds.  They want him to be at 100% but anytime we try it then his ANC drops way low.  I was hoping that this test would show that he does lack the enzyme because then there is no worry about why he is always so low and we would not care that he is only taking 50% dose.  BUT his test came back normal, so he does have the enzyme that breaks down the chemo.  So that didn't explain it.  NOW they are going to try changing the antibiotic that he is on to prevent a very serious pneumonia.  They want to change it to an IV med called pentamidine.  I didn't know much about it so I thought I would do a little research on it.  I found out that some of the little ones get sick after for a few days.  I was hoping that Chase would not be one of these, but we would not find out until his next clinic in June.  Since it is an IV med they will just do it every time he goes into get chemo.  So we continued the septra until his next clinic visit which was two days ago 6/10/11.  I will come back to that though.
After clinic he had to go down stairs for his LP.  He was actually kinda funny after being sedated for his LP.  He woke up SOOO quick.  I don't think he slept for more than 10 minutes.  The nurse came out to get us.  When we walk in he is usually still mostly asleep and just trying to come out of it.  This time he was fully sitting up and making demands of what he wanted to eat.  I was giggling because he knew what he wanted and wanted it now.  The nurse said she tried to wake him up and he kinda opened one eye and then closed it again.  She did the same thing again and he opened and closed his eye.  She then said, "Chase, you want something to eat?"  He not only opened his eyes, but sat right ups and started demanding food.  I don't blame him.  It is no fun to fast until lunch time when I have motivation and a purpose, but to be three yrs old and not understand why he is so hungry and no one will feed him.  I think he is catching on that the recovery room means FOOD!!!!
He did great the whole way home and just like always was so excited to be home and was out riding bikes and running.  (They tell us to not let him do these things after being sedated, but you should see him.  After being in a car for 5 hours I can't really stop him.  He is determined).

So since we are on the subject and all my post are old and out of order anyway I will finish with this months clinic.  We were here in St. George because he only needed chemo and no LP.  So we went in, but there were no orders from primary's for the new antibiotic so I called up there to see what we were supposed to do.  They said they would talk to the doc and let us know and get orders faxed.  The nurse comes into the room and says that she just talked to pam up at primary's.  This nurse we had was great.  She had a little girl pass away from a brain tumor at the age of 6 about four years ago.  She told us some of their stories and it was amazing to see how strong she was and so positive.  Anyway, she said she couldn't do the antibiotic today because the pharmacy there didn't have it.  So what this means is that we would have to come back in a few days, be re-accessed, and sit for another couple hours while he gets the antibiotic.  I started to get a little frustrated that primary's didn't fax the orders a few days ago so they could have the medicine ordered.  Then the nurse said to me, "I don't want to be the one to give it to him anyway, so I am glad that you can't do it today."  What the heck?  She doesn't want to give it to him.  Something is fishy here.  She went on to tell me what the nurse had told her on the phone, but no one had said a word to me.  They do not give this medicine to anyone under the age of two.  Well, Chase just barely turned three so he isn't far from this age.  When you give the med you have to stop and flush, and take vitals, and watch blood pressure really close.  WHY you say???  Well, in the last few minutes of the infusion the "little ones" code.  They go as limp as a noodle and you have to revive them.  YEP....they were going to give this to my son.  Because it was not available and we didn't want to come back they gave us another option. (Good thing, because there is no way I want to do that other one now)  He will now take Dapsone EVERY DAY at home.  They didn't think this was the better option because it would be a hassle to give him one more med a day.  WHAT ARE THEY THINKING???  I would much rather add one more home med to the huge list we already have then have to worry every month if he is going to make it through his infusion.  I am glad the nurse at Dixie was open and willing to tell me all that they had told her about administering the med.  I love PCMC but sometime I think they may with hold important information that needs to be said before us parents that are the advocates for our children make these big decisions.  They make it seem like the decision was about either taking a med everyday or staying at clinic and extra hour or so for the drug.  I don't care about that.  I care about if my son is going to die while getting the med or not.
So we will be adding another medicine to our routine, but other than that Chase did great on Friday.  His ANC was 900.  I had to laugh because the nurse was nervous to give him his IV chemo and called Primary's first.  Little does she know that 900 is really high for Chase.  I was excited when she said he was 900.  So two more clinic's down, and I don't want to even count how many more we have to go.  At our clinic up north a month ago they gave us Chase's OFF TREATMENT DATE.  I don't even like to think about it because I am hoping the time goes by really fast.  He will have his last chemo treatment on 10/13/2013.  Seems like forever away, but I am just going to enjoy it and remember that it is because of this nasty treatment that he is here with us today.

Dessert Hills Middle School Funds Chase's Wish

I am SOOOO behind on my posting.  We have been so busy.  We have been doing our CureSearch fundraising and so everything else got put on the back burner.  Then school got out and Abby was so excited to find out her teacher for next year is Mrs. McArthur.  She is in her class with one of her little best friends so she is really excited.  She has already told me what she wants me to make her for lunch on the first day of school. 
Before school got out we were contacted by Make-A-Wish.  They called to ask permission for Desert Hills Middle School to raise the money to fund Chase's wish (we went to Florida to see Buzz Lightyear in April).  Make a Wish had given the middle school a few different wish kids to pick from and they wanted to raise money for Chase.  This was a huge surprise to us because we had already been on our trip, but the kids at the school said they didn't care and that they really wanted to do Chase.  We were thrilled.  The girl who headed the whole thing up was Chelsey.  She was a sweetheart!  She had also had a wish granted by Make A Wish about five years ago to go to Florida also.  It was fun to talk to her and see just how genuine the love was behind what she was doing.  She was awarded the principals award for her school.  I am sure this is just one of the many things she has done.  They set up a Wish Box that the kids at school could pay money to make any wish they wanted.  From what I was told they were wishing for things such as front of the lunch line for a week, or smash a pie in a teachers face, or principal comes and takes notes with them in class for an hour.  It sounds like it was a lot of fun.  They also raised money by doing a walk a thon.  We were able to go the walk a thon for an hour or so and my kids were loving it.  They had all the attention they have ever wanted.  It was so cute because as Chase and Abby walked around the track they had a circle of people around them.  The ones that walked in front of them walked backwards so they were all making them the center of attention.  Chase thought he was pretty cool stuff.  My kids also took their scooters.  There was another boy there that had a scooter and rode around with Chase until Chase got tired.  One of the other boys carried Chase's scooter around for him until he was ready to ride again.  There was point that Chase got running a little fast and face planted it.  We had some bloody knees and hands, but he amazes me how he just jumps up and forgets about it.  I guess when you have felt extreme pain the little scratches don't matter so much anymore. 

This last picture is me, Chase, and one of the wish granters that lives down here in St. George.  She organizes all the parties down here also like the big Christmas one that we went to.  She is AWESOME!!!  After the walk a thon they also held a night at Red Robin where a percentage of everyone's bill that came in went to Make A Wish for Chase's Wish.  I still do not know how much they ended up raising, but we were at Red Robin for most of the night and all I can say is WOW!  THANK YOU SO MUCH TO EVERYONE THAT CAME!!!  We had so much love and support there.  It was fun so see so many familiar faces. 

This is Chase and Chelsey, who was the one who put this all together.

We went to dinner with one of our good friends, the Travellers.  I love these guys to death.  Shelly and I have been friends for a long time and all three of us went to high school together.  Anyway, they are amazing and our kids love playing together.  Other than Justin and Shelly's first child Ty, all of our kids are one month apart.  And I believe that Ty is only 18 months older than Abby (if he is even that much older).  After Red Robin we went to Nielson's Frozen Custard.  I got some cute pictures of the kids.

I told them to smile REALLY big, and told Chase to put his arm around her.  How cute are they!!!

Abby, Ty, and Jake.  They have a lot of fun together!

I want to say thank you to all the many people that helped out with this fundraiser for Make A Wish.  It is an amazing organization.  I can not wait until my life is not so crazy so I can be a volunteer down here for them.  They get to make dreams come true every day.  I don't want to sound selfish, but how amazing would that be to get to see the look on a child's face when you tell them that their wish is granted.  I saw the way my kids reacted and I an only imagine what it would be like to see that over and over again.  Thanks to Chelsey for putting all these fundraisers together.  Thank you to everyone who donated and participated.  There are so many people that were involved and donated that I will never know and probably never meet, but we are so thankful to them.  Our Make A Wish trip really was a turning point in Chase's treatment.  I made not only him, but our whole family feel "normal" for a week.  The miracles that Make A Wish makes happen are just that....little miracles.  I hope that one day I can pay it forward!!!