Two more days until our walk.  If you wanted to donate now would be the time.  You will be helping out so many little kids like chase that face a lot of scarey things each day.  Chase has had a very good treatment.  Many are far worse than what he has gone through.  I am reposting the video I made when Chase hit his one year mark in treatment.  We are two years into treatment now so the stats on the video have change, but his past and future have not.  He still went through all this and and still has more to bear.  Help out CureSearch and find a cure for these little kids.  They deserve to grow up and be big kids.......
Links for donations can be found at www.togetherforacure2012.blogspot.com

I have been terrible and keeping my blog up to date.  I feel so much guilt but at the same time I don't.  I have been using the time to spend with my family, but really I should be staying up at night and instead of crawling in bed to watch TV I should update, but I am so behind now that it is just overwhelming.  I will get to it soon I hope.

Anyway, This weekend Sept 29th is our CureSearch walk up in Salt Lake City.  We will be headed up for Chase's treatments at PCMC and then staying for the walk on Saturday.  We are getting really excited.  So this is your last chance.  September is childhood cancer awareness month and what better way to show your support than to donate to an AMAZING  organization like CureSearch.  They fund many children's hospitals and their cancer research all over the country.  Primary Children's is one of these hospitals.  If it weren't for organizations like CureSearch there would be no progression toward a cure for these cute little kids.

Our team this year is so much fun.  We have teamed up with cute little Taleah and her family.  If you don't know Taleah, she was diagnosed a little over a year after Chase was.  She also has ALL and Chase and Taleah are scheduled to finish treatment together in October of 2013.  I think we will celebrate the whole month.  But for now we are going to go to Salt Lake to walk and celebrate all them milestones and huge steps they have made so far.  They are both still fighting this long hard battle and we know how tough they both are.  They are both going to get through this together.  But without the donations and help from CureSearch they wouldn't have even had the chance they both have.  They would have been diagnosed and sent home with some pain medicine to keep them out of pain.  I am soooo thankful for how far the research has brought the current treatment, but it can get better.  It has TONS of room to improve.  We still lose 22% of those diagnosed.  So we still have 22% more to go.  We can do it, with your help.  Every little bit helps.  Head on over to our website even if it is just to see more of these cute pictures of Chase and Taleah.  There is a little video of them over there and it just melts my heart to watch it.  They are so cute!!!

Donate, join our team, become a virtual walker or just look at the cute pictures at www.togetherforacure2012.blogspot.com.  It is a happy video and you will be sorry if you miss out on seeing it!!!

Little Red Century Bike Ride

So last year I found out about the Wish 100.  It was a bike ride to raise money for the Make A Wish foundation which we obviously have dear feeling for and absolutely love.  I didn't own a bike but knew that I really wanted to ride in it so I did the 60 mile ride on a borrowed bike (I was only planning on doing 30 and last minute did 60 instead).  After the wish 100 I decided that I really wanted a bike of my own.  This is not something you can just go out and buy.  They are not so cheap.  So we canceled our gym membership and I started going to biolife and trying to save money where we could.  This was a goal for me not only to do something I enjoyed, but it seemed to be a sort of therapy for me.  It got me up out of bed in the mornings and I had a good hour or more of relaxation to myself.  The mornings were so peaceful to ride and it was nice to have some "me time."  After many months of saving I was outside talking to a neighbor when Ashton came home from work and what was on the back of his car?  A BIKE!!!  I was sooo excited!  One of my friends who had helped me get ready for the Wish 100 asked me if I wanted to go with her and a bunch of girls to ride at the Little Red Riding Hood in Cache Valley.  I was so excited and it gave me something to work towards as I was learning how to ride and training my very untrained body.  Even the training for the ride was a lot of fun.  I am actually sad that it is over.  It is fun to have something to look forward to.  So I told Ashton that he WILL be riding his bike with me around Bear Lake when we go up there in July.  So now he has to get on his bike (and wipe of the dust). 

So the Little Red was a blast.  It was Natalie's birthday so we just celebrated all weekend.  Long drive in the car, dinner at Maddox with the best rolls ever, and then stayed at my parents house for then night.  The next morning was the ride.  The sky was overcast and looked like it was going to rain, but with only a light sprinkle and the sun not coming through the clouds until about 11 am it was the best day for a ride.  We started in Lewiston and circled around the whole valley from Trenton, Amalga, Logan, Mendon, Newton, Trenton, Cornish, then up into Idaho to Weston, and circled around Dayton, and back to Cornish then over to Lewiston.  We ended our 100 miles at 5 hours 9 minutes.  That put us at an average speed of just under 19 miles per hour pretty much the whole ride.  For the first 30 miles we were 20 and above, but we decided if we kept that pace we may not make it to the finish line so we backed of a little.  The ride was absolutely perfect all except that the roads in cache valley don't really have a shoulder.  So we were pretty much on the road the whole time.  This made the drivers pretty angry at times.  There were still a few courteous ones, but the not so nice ones always seem to stand out like a sore thumb.  One of the girls that was riding with us got a head a little with a lady we had just met at the ride.  They took a wrong turn and we could not get them to answer their phone.  So when we finally got a hold of her she told us to keep riding and she would meet us at the lunch stop.  As we were eating lunch, waiting for her to come, we got a phone call from the lady she was riding with.  They were following a girl they didn't know and a car came from the opposite direction.  This car was being very rude, honking, hanging out the window and pointing and yelling at the riders to get of the road (again, there is no possible way because there is no shoulder on the road from mendon to newton.  It is a very small two lane highway).  The girl in the front of the line that they did not know paniced and hit her brakes.  This a is big no no when you are leading a pace line.  As you can imagine the domino effect then takes place.  The first lady we had just met slid, scraping up her whole body and ripping up the whole side of her jersey.  Then Steph, the girl that came with us, then hit heidi (the girl we just met) and flipped head over heals with her foot still stuck in her one pedal.  She gashed up her knee and the back of her head had big cut in it as well.  She had a concussion but still could remember all that had went on.  One of the girls from our little group waited for the emergency vehicles to bring her to the lunch stop to the first aid station.  They were transported back to the finish line and our other friend drove steph in her car back to her family in Eden.  You can replace most broken parts on a bike.  First and for most is the bikers health and safety, but after they find out they are going to be fine they want to know about their not so cheap bike.  Poor steph looked at her bike and was in tears.  Her seat was all bent up and would have to be replaced, but after looking at it further she found her frame was cracked.  A cracked frame it pretty much the end of a bike.  There is no repairing it!!!  Stephs bike was only a few months old.  She had signed up for the summer games, and now because of her injuries, and not having a bike to ride she will instead be saving money and healing her body all because of a car that thought they were soooo much more important that the life of another person.  It is hard to share the road when you are not use to it.  There aren't many events like this in Logan.  Living in St. George I have gotten used to the fact that almost every weekend their is a run, or a bike, or a triathalon, or an art festival.  Something that either takes up the road space or even closes down roads.  But this bring in so much money to our community.  It supports our local businesses and it bring entertainment to us.  I love to watch the athletes run across the finish line of the marathon or the Iron Man just knowing how hard that is and how much they have worked to get there.  Everyone isn't a biker, and they just don't get it.  I will say that until I started riding my bike I didn't fully get it.  I was still nice to the bikers, but now I have even more respect for them knowing how scary it is to be on your bike and have a big truck that flies by at high speeds and doesn't even spare and inch of space.  Just the wind from the truck almost blows you over and it is super scarey.  Anyway, I wasn't going to go off so much on that, but I just feel so bad for Steph and her injuries and her very expensive now damaged bike.  Come on people these are real living people on their bikes. 

Now off my soapbox, the weekend was so much fun.  I had a blast with all the girls.  I tried sushi for the first time and actually liked it....weird!!!  I learned a lot more about girls that I have been riding with and what amazing people they are.  I accomplished a goal that I set out to do and it was a lot of fun and feels very good to know that I can do anything that I set my mind to.  My next goal.....to get my husband to make it at least 50 miles.  This might be harder than riding the 100 miles on my own:)

Mile 30ish!

About mile 95 in front of my cousin's house.  Family was there cheering us on to the finish line.  This was the point that my butt was screaming to be done:)

Finish Line.  We actually did it!!!  I am no longer a 100 mile virgin:)!!!

Home for Rent in Las Vegas

Our first home that we lived in through dental school is available for rent the end of May.  We are trying desperately to find someone by word of mouth so that it is well taken care of.  It is a great safe location with lots of parks and young families near by.  It has only been lived in by myself (absolute germ freak....yes I admit it) and the current tenant who are also dental students and have taken amazing care of it.  It looks better than when we moved out.  She has got it painted all cute and just taken really good care of it.  If we can find someone that will also take good care of it we are flexible on price.  We just don't want it to get trashed.  If you know of anyone please give them the link to the blog with all the details.  www.highnoon4rent.blogspot.com
Thanks for your help.  You can email me dani2613@yahoo.com with any questions or if you are interested.

view from master bed balcony

living area downstairs.  Separate laundry room is just inside the door to the attached 2 car garage

fenced in backyard

master bed with balcony large bathroom and walk in closet

bedroom #2

bedroom #3

CureSearch 2012

I will give more details later, but I am too tired and want to go to bed.  I have created a blog for our CureSearch team this year.  We are currently doing a fun fundraiser with Miche convertable bags.  It goes from April 16-22.  All the details are on the blog I set up so just make sure you check it out.  You have to go to the blog just to see the cute pictures that were taken of Chase and our little friend Taleah.  They are to die for and you have to see them!!!  www.togetherforacure2012.blogspot.com

Bone Marrow Drive For Millie in St. George

Remember when I posted about Millie.  Well if not you can read about it here.  A little update on her.  They tested her brother for a bone marrow match and he was not.  So now they have to rely on the bone marrow registry.  She has to have this transplant to recover from her cancer.  It is her best option right now and she needs a match.  That is where you come in.  We will be having a bone marrow drive for her MONDAY, MARCH 12 FROM 10-6 AT DIXIE REGIONAL HOSPITAL.  Jimmy John's will be providing sandwiches and Albertson's donated all the drinks.  I am still working on getting cookies/donuts, but I promise I will find someone to donate these also.  So come out for the yummy food and swab your cheek!!!

Just so you know becoming a member of the registry is sooooo easy.  You fill out a medical history and then swab your cheek with a cu-tip.  If you are chosen, again it is so easy and not painful.  80% of the time it is similar to donating plasma.  The other 20% is a procedure that Chase has had done multiple times in his treatment.  So if he can do it, you can do it. Please come to this and if you can't please tell everyone you know in the St. George area.  They will also be doing it in Cedar on Tuesday.  So if you are closer to Cedar then head up there to Valley View Hospital from 10-6.  You can view the even on facebook at http://www.facebook.com/events/188414144601688/

Info on becoming part of the registry can be found here

I hope to see many of you there.  This one simple thing could save Millie's and many other lives!

Pickelville Playhouse Juanito Bandito...Watch the whole show online!!!

I keep promising to write something positive and upbeat.  Well you can't beat Juanito Bandito.  Not only is it positive, but it is hilarious.  You will laugh so hard your stomach hurts.  Well, at least at the show you will.  It might be a little different that seeing the show in person, but it is still as awesome as awesome gets.  The script writer, song writer, and Juanito himself TJ Davis has put the show online for the month of March only.  You have to go see it while you have the chance.  You will get hooked and have to make the trip to Bear Lake every summer just to see what he has in store each year.  My kids love Juanito.  Abby wears her I heart Badito shirt very proudly and knows all the words to all the songs.  And to my surprise she has been saying the lines of the show along with them as we watch it online.  She has only seen the show twice (once in Bear Lake and once in Logan) so that goes to show that it has made an impression on her too.  So click on the link and have a good laugh!!!  http://vimeo.com/37677023

Help My Friend Adam and his Family

So I keep promising to make my blog more positive.  I hate being negative, but when I keep hearing the things I do it is so hard to be positive and happy about cancer.  It is not a positive or happy thing.  We can speak positive of the outcome and what we hope the future will bring, but there are days that I want to scream at it and tell it how bad I hate it.  I seem to write about these days more than the good days, because on the good days I am enjoying the good in life.  On the bad days I need to vent. 

I have a very good friend from high school who married a childhood cancer survivor.  She was diagnosed at age 16.  She is now a wife and a mother of two of the cutest kids.  She has had her fair share of battles and deserves to live a full and happy life now.  This however is not the case.  After being told the cancer was back and fighting it for the second time, six months later she was again told the cancer was back.  THREE TIMES!!!  She is one amazing fighter.  And if you can help them in any way I know their family could use the help.  Even if it is just positive words of encouragement on their blog.  Here are Tessa's words (I have never heard her say a negative word in all that she has gone through)......

In '98 at the ripe old age of 16, I successfully battled Hodgkin's Disease stage II and went into remission. Twelve years later, the cancer came back, and it was a little further advanced and more aggressive than the first time, stage IVB. After extensive chemotherapy with ICE and an Autologous Stem Cell Transplant I was in remission... Until my six month PET/CT scan failed. Now, a year after the transplant I am facing cutting-edge treatment (Adcetris) and an Allogenic Bone Marrow Transplant (hopefully from one of my 3 brothers). Through all of this awfulness I've grown- stronger mentally, stronger in faith, and the love our family shares is as strong as it's ever been. I'm ready to fight for my life as a wife, mother, daughter, sister, and friend. Go ahead cancer... BRING IT ON... again! ha ha :)

Reading her blog is one of the most uplifting things I do.  It makes me realize that we need to enjoy and live life while we can.  She has an outlook on life like no other.  I have never met her, but I look up to her in so many ways.  She is one AMAZING person!  


Take just a few minutes and go read a little about her and watch the amazing video that shows just how positive and amazing she is.....  supporttessabassettwinger.com

This is my friend Adam Winger and his wife Tessa after she lost her hair with her SECOND battle with cancer.  Third time is a charm and I know she is going to beat it!!!!

Dental Convetion/Vacation at Grandma and Grandpa's

My parents are always so willing and happy to meet us in Salt Lake and take the kids every year so we can go to the dental convention.  The kids were so excited to go to their house without us.  I just love Abby to death because she always tells me how much she is going to miss me.  My mom said when they got to her house Abby was in the bedroom taking down all the pictures of Ashton and I.  Grandma asked her why and she said she just misses us too much so she can't look at our pictures or she cries.  Remember that she has been away from us for about two hours at this point.  Ashton and I had a great time together.  It isn't very often (maybe once a year for the convention) that we spend nights away from the kids.  Especially since Chase was diagnosed.  So it was nice to get some time to ourselves.  We went to a movie, and the Jazz game, and dinner where ever we wanted (not McDonalds).  We just enjoyed being able to do whatever, whenever we wanted.  I won two passes to Alta and hotel stay so we used that while we were there also.  I have never skied at Alta so it was a lot of fun and FREE!  (that is always the best part)  I was worried about Chase the whole time (what's new).  I know that my mom is fully capable of taking care of him, but not matter where he is (even when he is with me) I worry about him.  Mason had a terrible sounding cough that started in the car ride up to salt lake.  It wasn't often that he coughed but when he did it sounded like a barking seal.  Pretty sure croup has been going around our neighborhood and Abby already had it so looked like she gave it to Mason.  On Friday night after we got back to our hotel it was about 12:30 and we were just laying in bed watching TV and my phone rang.  It was my mom and I knew that couldn't be good.  She let me listen to Chase on the phone and I will admit I was a little nervous because his cough was the worst of all three of my kids and he wasn't breathing well.  His fever was low grade, but he is always hotter at night so that didn't worry me unless it got higher.  So I called the oncologist on call.  She probably thought I was an idiot, but since I was not with him I needed the reassurance not only for me, but for my mom that he was going to be ok.  She said to just take him outside and unless he gets a fever we did not need to bring him in.  My mom said she slept with him all night and took his temp every hour.  They were both up until about 3:00 because he would cough so hard he would gag and want to throw up.  So it was a long night for them, but again, I am so glad I have my mom who stayed calm and just took care of my baby.  She is such a good grandma!!!  We had a great weekend all around (except the sickness).  Now we can look forward to our next trip....a cruise to the Caribbean.  Ashton's parents gave it to us for Christmas.  I am more nervous for that because of being out of contact scares me a little.  But again, with my mom being so awesome I am not as worried (but still a little....I will always worry, but that is a mom's job I guess).  Some fun pics from our little trip....

See the BIG YELLOW TAG?  We got to be VISITORS at primaries.  We went up to take some fun stuff to millie and some lunch because lets be honest, hospital food gets old fast.  Took this picture to send to Chase up at Grandma's.

We had the best seats in the house ;)

Grandpa's favorite chair.  It has his body molded into it.

Just a bunch of kids!!!  I love these guys!

We got to go see "Who Shot Janito Bandito?" again, this time in Logan.  It was just as good and maybe better the second time.  We laughed so hard.  I can't wait until Pickleville comes to St. George (hint, hint).  Abby wanted to get a picture with bandito at the show while wearing her I heart Bandito shirt.  But as you can see her face is bright red and this is her "I am embarrassed" smile.  Thanks TJ and clan for such an amazing show.  We loved every minute of it!!!

Bella and Abby made up a show with props and scenery in the background.  The show was El Bandito, the musical!  They made us tickets and invited us to come watch their show. Then they danced on the bed to the Bandito soundtrack.

Playing at Grandma and Grandpa's is hard work!!!

Valentines Dinner

Since we couldn't go out because of Chase's low counts I wanted to make Valentines at home special.  So Ashton came home from work and took the kids to fill the car up with gas.  I set up and cooked dinner.  I turned on some music, lit the candles, and turned out the lights.  When the kids walked in they were so excited.  We all had a candle light dinner (heart shaped pizza) together and enjoyed our Valentines day together at home as a family.  The kids got a kick out of it, and of coarse Ashton asked me if this is what our Valentines day dates have come to now?  We still get the candle light dinner, but the kids come with it???  Of coarse, and we had a lot of fun.  I have to post two pictures because there wasn't one picture of all that I took that all the kids were looking and the one that mason is looking is blurry of Chase and Abby has her eyes closed.  So here are the best two I could find. 

Valentines Surprise

Chase and I spend all morning yesterday making his valentines for his preschool so we could drop them off to the teacher to hand out to his friends for valentines since he wouldn't be there.  Chase had a blast and wrote his name on all of them all by himself.  He even told me I couldn't watch him do it.  He did a great job!!!  I feel like my other kids get the shaft as far as my posts go because Mason just follows me and Chase around in whatever we are doing.  Abby is at school all day and it seems like when she gets home we do homework, have dinner, and go to bed.  I need to get some Abby and Mason posts on here.  I will work on that....

We cleaned out the kids art drawer and collected more than enough old crayons and melted them in our heart ice tray to make a little heart crayon and said, "Happy Valentines Day for Crayon Out Loud!"

So with my bad attitude this morning it was making it hard to enjoy the day of LOVE!  Valentines was not shaping up to how I wanted it to be.  Just after 12 there was a knock at the door (remember Chase was not at preschool and hasn't been for a few weeks because of his low ANC).  Chase opened the door to find lots of surprises from his teachers and his friends from school.  He was so excited!!!  Their timing couldn't have been more perfect because he was crying because he couldn't have a certain friend come play because they have been sick.  This cheered him right up.  He has the cutest little preschool and I just love his teachers.  They are always so careful to make sure that it is a safe and CLEAN environment for Chase to be in.  In fact, I was taking him with low counts because I know how clean they are there until one of the nurses at PCMC told me it was probably not such a good idea.  I guess it doesn't matter how clean they are but all the other kids he is around that the nurse was worried about.  So we haven't been taking him.  Anyway, here is Chase's HAPPY VALENTINES DAY!!!!  Thanks for all his friends and his teachers for making it a special day for him.....

Heart attack!!!!  All the kids had colored a heart to put in the grass.

Chase was overly excited about all the valentines his friends from school send to him.  And they made him this cute candy gram.  He was so overwhelmed and excited.  Mason was just excited that the front door opened so he could escape!

Another view of the heart attack.  Can you see Chase running out of the house to come show me another awesome valentine he found in his bag?

No Methotrexate!!!!

***Disclaimer, if you don't want to hear me vent yet again, please don't read this***
No Methotrexate is not a demand, I mean YES we want it!  But there is NO METHOTREXATE!!!   On top of all the anxiety I have had lately between having a close friend relapse, and Chase having low counts, and him not taking any chemo (I go to bed each night thinking the cancer is going to come back because he is not taking any chemo) I can not handle one more negative thing.  I want to start hearing positives.  I want to hear that Millie's brother is a match for her, I want to start hearing of more off treatment success stories, ANYTHING POSITIVE.  But instead I was watching the news last night (which I don't do very often) and they start taking about a shortage of Methotrexate.  WHAT????  I panic and head over to my cancer mom facebook page.  I know there will be a million comments on this by now because I am sure this is not the first time they have had it on the news.  Sure enough, it is all over the wall.  I will back up and bit and tell you how I have been trying to get my families emergency preparedness stuff in order.  We have a long ways to go, but we have to start somewhere.  So with that I have been worried that we can only get chase's meds monthly because of the way insurance pays for them.  So I don't have much of a stock pile of it.  I would like to have at least a month of extra and even more if possible.  I have not had time to do this, and then I heard this on the news.  I am not sure that it applies to his oral meds though.  He takes oral Methotrexate, but he also has it injected into his spine each time we go to PCMC.  This is they type that they have a huge shortage on.  I couldn't sleep last night thinking about so many cancer things.  I just laid there awake worrying about things I have no control over.  Why can't these drug companies make more.  Don't they know that my son will die without them?  Don't they care?  Someone has got to do something.  Our treatments are failing.   These little kids have the best cancer there is to have and we can't get rid of it.  Then the treatment that isn't perfect, and really should be, can't even be done because the chemo we need isn't being made by the drug companies.  I swear that my anxiety level has not been this high in our whole treatment.  The first few months after diagnosis I don't think I had anxiety, I was just too wrapped up in all that was going on to have time to think.  Then I hit a point where I thought we had made it.  We know how to live this kind of life and we can handle this.  Chase has a good chance of beating this cancer and we have nothing to worry about.  Now I am at the point where I want out.  I want to be done (yes, I have said this a million times but I still want to be done)!!!!  I don't feel like my head is even clear enough to function.  I just worry all day about Millie, Chase, and all the other kids that just don't deserve this.  I have come to find that my voice doesn't seem to do much either.  As far as passing bills to increase funding, and writing emails to important people that seem to have far more important things going on other than childhood cancer.  I just wish I could make a difference.  I want this to end.

I got an email this morning just solidifying everything I had nightmares about all night.  There is no more methotrexate.  There is a huge shortage and when Chase goes in for his next treatment in April there is a good chance they wont have the chemo that his little body needs (yep, his body needs poison). 
Here is the email I received from CureSEARCH:  (feel free to participate in any or all that they recommend)

As you may have heard through recent national news stories, there is currently a significant shortage of the chemotherapy medication preservative-free methotrexate in the United States. This drug is critical to the treatment of children with Acute Lymphoblastic Leukemia (ALL). Unless production of preservative-free methotrexate increases, hospitals will run out of the medication completely in the days and weeks ahead.

YOU CAN HELP IN TWO WAYS

Contact the following pharmaceutical companies who produce methotrexate and ask them to:

1. Prioritize the production of the preservative-free form of methotrexate.
2. Consider working with the FDA to import preservative-free methotrexate if sources are available.

APP Customer Service	1-888-386-1300
Hospira, Inc. Customer Service	1-877-946-7747
Mylan Institutional	1-888-258-4199
Sandoz Customer Service	1-609-627-8500

Second, contact your Representatives and Senators on Capitol Hill and ask them to immediately send a letter to these same pharmaceutical companies requesting that they:

1. Prioritize the production of the preservative-free form of methotrexate.
2. Consider working with the FDA to import preservative-free methotrexate if sources are available.

To send a letter to your representative, click here.

Thank you for your support of this important issue!

 ***This is in italics because my computer is being tempermental and wont let me switch it*** 

So as you can see I panicked again.  One of the oncologist at PCMC said to stop worrying because they would just use a different chemo in it's place if they do run out.  But then I think, what do they know about that type of treatment?  It hasn't been tested, it is not part of our protocol.  And the chemo itself we have had before in treatment and it has lots more side effects than methotrexate.  So he will probably feel yucky and it is injected into his spine and goes straight to his brain.  I don't know that I want to be running experiments on his brain.  I am sure it will all be okay and it is better than getting nothing, but like I said before, I just want to be done.  Sad thing is that even when we are done the worrying will never stop.  I have lost all my innocence and I will always worry if the cancer is back or if another one of my children is showing signs.  We have all been given our trials and when we get through them we are stronger in the end, but I am not seeing an end.  When is the end going to come?  

Neutropenic Play Date

Chase has a little bit of cabin fever and his mom is probably worse than he is.  We have thought of every possible friend to play that is not sick or has not been around a lot of school age siblings.  He got to play with his cousin Cam on Tuesday and he had a blast.  Cam played all day and even at the end of the day they didn't want to part.  Cam left thinking he was coming back the next day.  Hope he wasn't too disappointed when he didn't come over the next day.  So yesterday we entertained ourselves with the puppet making and pretty much played the "find the superhero squeaky guys" the rest of the day.  We have even played it again today so that was a hit.  If a game lasts more than five minutes I consider it a success.  So today I was talking to Taleah's mom Tosha and we decided to get our two little neutropenic cabin fever kids together.  Tosha got off work and came over to play.  I got out the tea set because I figured that Taleah might not get too excited about all the cars and super heros.  It didn't last very long mostly because the two younger brothers crashed the party.

The cutest little tea party ever! Fast forward to when they are both 16 and dating....ahhh how cute would that be?  On second thought, maybe not a good idea.  I am sure that gene pool would produce lots of little cancer cuties!

It was a very progressive play date.  They were here for about 3 minutes, then in Chase's room for about 3 minutes, then we headed upstairs for a few games, then back down, and started the whole rotation again.  Shouldn't they both be tired?  Low counts usually means they are tired, but these two had more energy than me!!!  It was so cute because Chase kept calling Taleah Cami.  Cami is one of our other little cancer friends that lives in Salt Lake.  After he called her Cami about 12 times and we tried to correct him we just asked Taleah if she wanted to be Cami today.  She follows Cami on her blog and has looked up to Cami in a lot of her treatments.  So Taleah was perfectly fine with this.  She just said, "Yep, I will pretend to be Cami!"  She is such a cutie!!!

We played the curious george game upstairs (Don't mind the play room mess in the background.  There is no point in cleaning it because five minutes later it looks like this)

Giraffe Chase

Little Piggy Taleah (or Cami)

Mason had to join right in on the fun.  Doesn't he make a cute panda bear?

The little boys got tired really quick so it was a quick play date, but anything helps to break up the same old daily routine.  Chase didn't want them to leave so Taleah said he could come over and play on her new slide in her back yard.  So we have another play date to help us get through yet another day of low counts.  We just keep praying they will come up.  There is nothing that should be keeping him so low.  I hope that they are up next week so I can rest at ease and start giving him his chemo again.  In the mean time we will keep finding things to keep us busy!

Another Round of Hair Loss

Yesterday Chase had this one weird place on the back of his head that almost looked like someone had taken a 1/4" wide razor and buzzed up his head.  We didn't go anywhere so I didn't comb his hair yesterday and just thought it was that way because of how he had slept on it.  This morning it looked the same, but even more noticeable.  I ran my fingers through his hair and came out with a hand full of hair.  So I went to his bedroom because the bed and pillow is the tell all.  Yep, sure enough his pillow was covered in hair.  WHAT THE HECK???  We are in maintenance.  You aren't supposed to lose your hair in maint.  The doses of chemo are low enough that they usually keep their hair all the way through.  I think it hit me a little harder than the other times he lost his hair because I wasn't ready for it.  Last time I was just waiting for it to happen so when it did I had already come to terms with it.  Chase was also so young last time that he didn't have a clue what was going on.  So this time I kinda have a pit in my stomach.  I know it is not a big deal, and I actually like his little bald head, but I just wasn't prepped for it.  I thought maybe we could wait and see what happens.  I put a shirt on him for the day and went in the other room.  I came back to see if he would be up for a haircut and already his shirt was covered in hair.  It was time whether he wanted to or not he was getting a hair cut.  I don't want hair all over the house.  I told him he could pick a movie and he finally agreed.  I started cutting and when I was almost done he said, "That is not the kind of hair cut I wanted!!!"  He was not happy.  He didn't want all his hair to be gone.  I tried to explain it to him, but he was not having it.  I just finished cutting it and put him in the shower.  He is now eating lunch and while I was fixing lunch he rubbed his head and said to me, "I DO like this hair cut!"  I am glad he is ok with it because I was a little nervous we were going to have a break down.  I didn't have to explain anything to him last time so this is new to me.  I don't know how to tell him why.  Even when I do try I know he isn't fully understanding it all.

It is hard to see in this picture but the whole back of his head is covered in bald spots.

Chase gets haircuts in his underwear so excuse the nudity!!

What a stud!!!  He was not happy with me at this time so I am surprised I got such a good smile out of him.

Super Hero Sock Puppets

Nurse Jeanette came this morning to do another CBC.

Chase had to show her his phone (dad's way old one that we charged for him) and his squeaky guys (you will meet them later)

Chase has been off his chemo for a week and I was really hoping for high counts or at least high enough to start his chemo even on a low dose.  Well, his ANC jumped from 400 to a wopping 500.  In a whole week with no sickness or chemo he can only come up 100??? I am so frustrated.  I really wanted to start up chemo again.  The longer he is off it the more chances the cancer has to have free reign.  It just really scares me and now we are going to have to wait another week.  So after I got over the fact that we still have to be confined to our house I decided we needed to make the best of it.  I spent the last couple days scrubbing and cleaning my house.  When he has low counts I get even more paranoid.  So my house is clean, my laundry is done, and it is time to spend some quality time with the kids.  I pulled up a site on pinterest and found some fun ideas.  I read the list to Chase to see what sounded fun to him.  He picked out making the sock puppets.  The picture of the one we saw looked like this....(you can find the tutorial at Six Sisters Stuff)

So we started gathering things we could use to make our sock puppets.  I couldn't find a sock as cute as this one, but we at least found a usable one.  Then we sat down at the table and I started asking Chase what he wanted (colors, eyes, spikes, etc.)  He then tells me that he wants a spider man one and a captan america one.  REALLY?  Who does he think I am....super mom?  So I decided to try my hardest.  All I had to do was hit the main points of both characters and we would be set.  The problem was that to Chase the main thing with spider man is his web shooter.  I didn't know how I was going to pull that off.  So we sat and glued and he gave me directions the whole time so that I didn't mess up.  He told me what colors to put where and what they both needed.  Mason was a big help and ate all the pom poms that we weren't using and spread them through the house.  Always nice to have those really little helpers.  Needless to say we now have a spider man and captan america sock puppet and they both got Chase approval so I guess we did ok.

Notice the most important parts, the web and the shield. 

After we got our puppets built we decided that iron man and spider man needed to go fight the bad guys.  So Chase (spiderman) would hide our bad guy green goblin (the small squeaky guys). Then Captan American had to go find the green goblin.  After a while we decided to bring in some back up for help.  Spider man started hiding all of our squeaky guys and we had to find them all first before we went to find the green goblin so that they could help us catch him.  As you can see the squeaky guys are just small little figures not much taller than 1/2 inch.  So they make a good toy to hide.  Spider man and captan america took turns hiding and seeking.  This kept him entertained for a good hour plus the time it took us to make the sock puppets.  Morning well spent!!!

Just so you can see how small these little tykes are.

Here is the line up of the super hero team.  There are a couple bad guys mixed in, those are the ones we had to go fight.  From left to right I am going to tell you I would have never known more than spiderman, captan american, and ironman had I not had a little boy who loves super heroes.  We have Mr. Fantastic, Thing, Hulk, Thor, Magneto, Wolverine, Spiderman, Ironman, Captan America, and The Green Goblin.

Prayers For Millie

Millie is amazing!  She has been through so much.  Two years of chemotherapy and not an easy road either.  She has been battling a few different things these last two months of her treatment.  She had kidney stones (I have never had them, nor do I ever want them because I hear they are terrible).  A child that has been through so much pain had to endure even more.  It is just not fair.  Well, on Feb 2 Millie went to the hospital for her last treatment.  She had her chemo and a bone marrow aspirate and she was out the door.  How exciting and what an amazing day for Millie and her family.  They have been through so much in the last two years and they deserve a huge congratulations and a party.  That is what they did.  Little did this amazing little family know what was coming just a week later!

This is Millie in July of 2010.  She just melts your heart!!!

This is Millie just recently getting her FIRST haircut since she lost her hair.

Look at all those curls!!!  She has worked so hard to grow them back!

Because of Millie's rough road the last few months and her blood counts not being what they should be toward the end of treatment so they decided to do a bone marrow aspirate and have it tested just to be sure everything was ok.  They got the results yesterday and they were not what they wanted to hear.  The cancer is back!!!  Millie has the same cancer as Chase.  Their prognosis is very good.  It is very unlikely that ALL will come back.  But obviously there is still not a perfect treatment to get rid of it for good.  Millie is now going to be admitted to the hospital (today) and undergo three very intense months of mostly inpatient (if not all three months inpatient) chemotherapy.  Then more months in the hospital to recover. She will be sick and her beautiful curls that she is so proud of and worked so hard to grow back will all be gone AGAIN!  They will kill every single cell in her bone marrow until she is at zero so she can have a bone marrow transplant.  This is very risky because without your bone marrow you are at risk for all sorts of sickness.  If she gets even one little bug it could be life threatening to her.  (that is the reason a lot of the time is spent in the hospital in the confines of her own room with very few visitors).  Millie had just started school this year and was loving it.  Kindergarten is such a big deal to these little kids.  They get to go to school and be normal.  Millie will not be attending her school and will be stuck in her 10x10 room up at PCMC.  

Today they are testing her only sibling (siblings are the first ones tested because they are the most likely to match) for a bone marrow match.  Her little brother is only 2 years old.  He doesn't understand all that is going on, but he could potentially be his sisters life saver.  This is where you come in....PLEASE PLEASE pray for this family today.  This is big!  Austin (Millie's little brother) has a 1 in 4 chance of being a match.  They need him to be a match.  They are having a special fast today in hopes that Austin will be Millie's match.  

We just love the Flamm's.  They have done so much for us.  Every time we go up to Salt Lake for treatment they have very generously let us stay in their guest house.  They have been a huge support in Chase's treatment.  Obviously they are ahead of us in their treatment so they always explained to us what was coming and what we could expect.  Amanda has been one of the shoulders for me to lean on and vent to and cry on.  It has been so nice to have someone who just gets it.  You don't have to explain ANYTHING!  She just gets it.  So when I got her text yesterday telling me the news my heart sank.  I spent most of the day crying and just thinking off all they have ahead of them.  She didn't have to say ANYTHING to me except the cancer is back because she knows I get it.  She knows that I know the treatment is harsher, more risky, and the prognosis goes down.  It is just not fair.  Why does this world have to have cancer.  I have had more people tell me bad stories with bad outcomes lately than good.  It should be the other way around.  We should be figuring this disease out.  We should be curing it.  My heart is with the Flamm's and has been through these last couple months of Millie's rough patch in her treatment.  It will be with them for the next while just praying that all goes like it "should."  But at the same time I can not get the very selfish thought out of my head of, "What if?"  Chase has this exact same cancer.  What if we go through three and a half years of chemo and treatments just to have it come back and then have to do even harsher treatment.  I will tell you that when Chase was diagnosed I didn't cry right off.  I think I was in shock.  It wasn't until I was laying in the hospital bed next to him with everyone sleeping that I finally broke down and lost it.  I think this is because I didn't know the road a head of us.  I didn't know how hard it would be.  I was willing to do anything and everything to get him through this.  But if someone told me it was back.......that is all they would have to say.  I know now!!!  I know what cancer is like.  I know how much it takes away these little kids childhoods.  And I know that it would be that and only worse the second time around.  I think I would lose it then and there.  I don't think I could function.  I just don't want to see these little kids suffer anymore.  I have said before that I can't imagine my life without cancer.  It is just a part of us now, but there are so many days that I wish it weren't.  I want to be oblivious again to the fact that there are kids dying everywhere.  I don't want to know about all the CRAP they have to go through.  This is just not fair to Millie or her family.  THEY WERE DONE!!!  They paid their dues and they are supposed to get to move on with life not start over again!  I am so sorry for the venting but I held it in all day yesterday.  I needed to let it out today.  There are days that I have to write blog posts and just not post them because I hate making my blog depressing.  I want to show the happy times, but lately the happy times are getting blurred just a bit and I need to get what I am thinking off my chest.  

Millie, we will be praying and pulling for your family today.  Austin will be a match, he has to be.  We love you guys and want you to know we are here for you no matter what life hands us.  It is going to hand you cancer, take it away, and then hand it to you again, but we are here to fight with you. 

EVERYONE PRAY TODAY!  

Valentines FHE

Abby was in charge of FHE all by herself.  She told us she had a good idea and she wanted to do it all alone.  When she got home from school she started working on it.  We had dinner and then Mason was a mess so he got put in the shower in our room and we had FHE in our closet.  Weird, but we had a lot of fun.  Abby read us a story about telling the truth.  Before we went into our closet she played us a primary song on the piano.  After her story, she handed us all some little pink paper hearts.  She told us we had to write something we liked about everyone in our family.  After we did this she glued them all to a paper plate to make them look like a wreath.  She read them all to us and we had to guess who had wrote it.  The night ended with a good game of hide and go seek.  That is after we got Mason out of the shower.  I am going to say it was one of the best FHE's we have ever had.  She is quite the kid.  I just love her!!!

Our little wreath all finished and put up in the living room for decoration!

Rough Round of Chemo

Chase has been pretty tough through all his treatments.  He very rarely complains and is usually full of energy and loves to be around people.  Well, he had treatments last Friday and about Sunday night he started complaining of his tongue hurting.  He wouldn't eat dinner and  I din't think much of it because my mom and dad were here and I thought he just wanted to get down to play.  So I brushed it off and went on with the night.  We got up Monday morning and it was just me and him and Mason.  Everyone had left and he wanted breakfast NOW!!!  He didn't eat dinner so he is starving and he is on steroids so he is craving food like no other.  So I got him some cereal and he took one bite and said his tongue hurt again.  I said have a drink of milk and see if it feels better.  He tried that and the look in his eyes told me that it really did hurt to swallow.  I got a flashlight and looked in his mouth.  I couldn't see anything out of the  norm.  Tissues were all nice and pink and his throat looked fine too.  So I asked him if he wanted to try to eat something else.  He said he did and we played this little game all day.  I cooked something, he took one bite, and we threw it away.  I think he just kept thinking he was going to find something that wouldn't hurt. I finally got him to eat a gogurt, and he did drink a little bit of milk.  That was all that he had all day other than one bite of everything I made.  It was almost more frustrating that when he feels good on steroids because at least then the food I make all day doesn't go to waist and he feels good (well, not good, but better than he does now).  I was a little worried going to bed thinking what is wrong.  The only thing I could think was that he had mouth sores and they weren't showing up in his mouth.  He had told me a few times when eating that it hurt his tummy too.  Mouth sores can show up anywhere in the GI tract.  It is all the same kind of tissue and from what I have heard they are not fun.  But why would they be everywhere but his mouth.  I was hoping we would wake up and he would forget about it and they would be better.  That was wishful thinking!!!  Tuesday was worse.  He knew they hurt and wouldn't even try anything.  He wouldn't drink and trying to get him to swallow his meds even with a small sip of water was torture.  I felt so bad for him.  By mid morning knew that if I didn't start getting him to at least drink he was going to be dehydrated.  So to stay on top of it and not let that happen we had to do something.  We went in Tues afternoon to see Dr. T and see what he thought.  Chase had not been taking naps and not sleeping well at night either.  He would come in to our room so many times that we gave up and let him stay in our bed (this has not happened once in our whole marriage).  Anyway, so he fell asleep in my arms at Dr. T's office.  This is extremely unusual.  His lips had also been really chapped and he had started pulling at the loose skin.  So I started getting nervous that he was on his way to dehydration.  Dr T. checked him out and he slept through it all until he tried to look in his mouth.  He started crying (tears streaming....yay, not completely dehydrated).  Dr. said that his throat looked fine so we knew that he wasn't sick with strep or anything.  This is when I was convinced that he must have mouth sores that stretch from his throat to his tummy.  We got a new script for oxycodone just incase we needed it.  We can't give him tylenol because it has a fever reducer and we don't want to mask a fever.  If he were to get a fever we would have to go to ER ASAP.  So we got the oxy and headed home.  When I got home one of the cancer mom's I know had posted on Facebook that her little girl's most common side effect in maintenance (the phase that Chase is in in treatment) was mouth sores and they never show up in her mouth.  This had me convinced.  I know this is what it is!!!  So we gave him a little oxy (also a pain because he didn't want to swallow it).  About a half hour later he was eating and drinking like he had been starved (maybe because he had been).  The steroids were telling him he was hungry and his throat wouldn't let him eat.  He was miserable and didn't want anything to do with anyone.  Like I said my mom and dad were here and even that wasn't cheering him up.  He loves to play with them and he showed no interest.  They couldn't even look at him.  So we suffered (mostly Chase did) through the next few days and gave him oxy when it was really bad and he wanted to eat.  Finally the weekend hit (just in time for dad to be home and mom can have a break from the madness) and he felt 100% better.  I tried to tell Ashton how bad this week was and there was just no telling him.  I think sometimes he thought I was lying to make my day sound terrible and have him feel bad for me.  On wednesday my mom and dad stayed with us all day.  So when Ashton got home they could attest to the miserable circumstances all day.  Chase would perk right up when his dad got home and for some reason the nights were so much better than the days.  So we are glad to have that in the past.  I have never been scared or anxious for his monthly IV chemo because he always had handled it so well.   Now I get to add another worry to my list because I do not want that to happen again.  He spent the most part of his week on the couch in this same spot.  These clothes he has on are his pi's from not only the night but the night before that.  I couldn't get him to change them.  But I guess that is what I want to do when I feel yucky.  Give me my pi's and let me watch some TV!!!

This is the face I would get every time he had something in his mouth and needed to swallow.  He knew it was going to hurt, his hand would go to his mouth, and he would force the swallow.  His poor big steroid eyes just about killed me.

Once we got oxy in him he would perk right up (who wouldn't right???)  He wanted to watch Toy Story and he got all his Toy Story guys to watch it with him.  

First Clinic of the New Year

 Chase has been doing pretty good lately.  His counts haven't been the highest and we had our little fever with a virus over Christmas, but other than that he has been in good spirits.  I have been shopping for Ashton's little office remodel and we haven't been able to find end tables that we like so Chase and I left for Salt Lake early so we could hit a few home good stores and see what we could find.  Didn't have much luck but one of my good cancer mom friends had found some and got them for me.  So after roaming around and finding nothing we headed out to their house.  Chase was so excited to go play with Cami and Caden.  Chelsea had used blue painters tape and made a huge car track through their whole living room.  Chase was in heaven.  Chelsea's mom came over and we made cookies and played games.  After, the kids all cuddled up in Chelsea's bed with "Grandma" (Chelsea's mom).  Chase was loving it.  He loves the place that we usually stay with all the animals, but I think he was excited to have some toys and other kids to play with.  Needless to say we didn't get to bed too early and we had to be at primary children's at 7:30 am.  It was just Chase and I so I was a little worried about the drive home.  I didn't want to fall asleep driving.....but of coarse Chase stayed awake the whole time and kept me company.  So we were planing on staying at our usual place, but when the kids got playing and it got late we ended up just crashing with the Carvers.  Thanks guys for letting us stay last minute and showing us such a good time.  We had a blast!!!
So clinic went pretty good other than the fact that Chase's ANC is back down to 600.  He dropped to 500 with his fever over Christmas, but then he came back up to 900 so I thought he would be at least that or higher, but nope!!!  He dropped back down :(  They didn't change his chemo dose which I didn't think about too much at first and then the more I thought about it I didn't like it.  His little body needs a little bit of help when it is trying to get back up to normal.  Then he can handle his full dose of chemo.  So we will see what his next CBC is, and if it is low still I will be hoping for a drop in his chemo dose.  (update: nurse jenette came and did CBC two weeks later and he was only 400 so they took him completely off all his chemo.  I was so sad because if I would have said something while we were up at PCMC about reducing his dose he wouldn't be off all his chemo)
On our drive up there Chase had asked me, "mom, do I have to have a sleep this time?"  He has got it figured out that when he goes on the long drive to Salt Lake that means he has to be sedated.  Poor kid!!!  He said after I answered yes that he didn't want to go to sleep.  After playing with cars in the clinic we headed down to RTU.  Chase knew where we were going.  I am telling you, we think we can fool these little kids when really they know much more than we think they do.  We were waiting for the elevator and he said to me, "mom, I just don't like the pillow!"  Really Chase???  That is the reason you don't like to have a sleep?  So I told Wendy (one of our fav RTU nurses, but we have a few that we like down there) that we didn't want the little blue doughnut pillow.  She took care of it quick.  Her and Chase started playing with it like it was a frisbe.  He was almost in mid throw when the anesthesiologist said, "mom you got him?"  and a second later he was out.  So we got rid of the pillow and hopefully he would wake up happy.  Well, he didn't.  In fact he slept FOREVER!!!  I just kept wondering when they would come out and get me.  Finally the nurse came out and got me even though he wasn't awake yet.  We tried telling him we had food and shaking him.  It was no use.  He was having a super good nap.  When he did finally wake up he was extremely grumpy.  I usually just pick him up and carry him to the car or back upstairs if we still need to get chemo.  This time I had too many of his toys and he has gotten really big.  So they put him on my lap and pushed us in a wheelchair back upstairs.  After getting him some yogurt, milk, and markers to color he started perking back up.  He was ready to go home though.  But as we walked out of the clinic he was looking for spider man so we walked down to the third floor to get another picture with him.  I think his spider man pictures are going to be his growth documentation because I think we get one every time we go up.  He was again a little trooper and I was so proud of him.  He wasn't very friendly to all the docs and nurses this time.  I am not sure if it is because he is getting used to just seeing Dr. T in St. George (who he loves) and all the nurses at DRMC (which he also loves) or if he just didn't want to be there that day.  Either way, he was just happy to be headed back home.  Because of his long nap in RTU he didn't sleep a wink in the car.  It makes for a long drive for him, but he was still awesome.  I am so glad that he loves the car.  If we lived back in the day where TVs didn't exist in the car, or hand held games (iphone) we would be in trouble.  Another round down, and who knows how many left to go.  I don't want to count.  All that matters is we have another one behind us.

Chase snuggled up with Cami and Caden in Carvers bed.

We used the dry erase markers to make a car track on the paper once and now he looks forward to it every time we go.  He even packs certain cars to take with us in case the clinic doesn't have the ones he wants.