Monday, April 14, 2014

Make a wish Star raising

In March Riley and ALL of our family got to go the Make-A-Wish for his star raising ceremony. It was so incredible!!

 He gets a star and writes on it then he gets to help lift it to the ceiling where all the other stars and hung from every child that has every been granted a wish.

 His is the only blue one mixed in with red and orange! It's in the perfect spot!!

All of our family was there except 2 family's, we had a tore of the building and had cake to celebrate!!
Here is a picture of my family. Chris's ended up having to be somewhere else towards the end, when we broke out the camera for family pics!!

We cannot thank you enough Make-A-wish Utah!! And all who has donated to this incredible charity. Thank you also, to, Steve!! Our volunteer, who has been there through all of this and helped make everything happen!!

Riley says at least  3 times a week how much he misses Florida and how bad he wants to go back!

The bad part about this is...... Riley says he can't wait to get cancer again and make another wish to go to Australia!! HaHa!!! Not funny kid!!

6 month scans!! Freedom for 3 more months!!!!

I can't believe it has been 6 months and 2 weeks since our last chemo treatment!!
And I can't believe it has been 3 months since I last updated!

We are once again free for 3 more months!!!!
 Best feeling in the world!!! 

We had a CT today with I.V. contrast as well as the "Root beer" drink contrast. He did awesome! He was scared when they did the I.V. and took it out, but that was all! He also didn't like the "smell" of the hospital or the hand sanitizer! I'm pretty sure he's scared for life!!
We met with the oncologist and she said the scans are good and the spot on his liver is the same as it was. I wish it was gone, but I'm glad it hasn't grown!!!
Labs looked awesome!! And urine was perfect!! 

But the BEST thing of all (according to Riley) is his massive amount of hair!! The kid won't cut it and it's thicker and longer then ever!!! 

Deep breaths, momma's right here!

This little machine with the blue, red and yellow dots, is the contrast die machine that injects the die into Riley's  I.V.  They said it makes him feel warm all over inside!

We are loving being NED!!! (no evidence of disease)
Riley is doing so so well!! 
He has been living each day to the fullest!

We celebrated his 1 year since diagnosis mark, on April 1st!! Riley and I made chocolate and yellow cupcakes and took them to class along with his wrist bands to thank everyone for loving him and helping him through this year! We also delivered some to the doctors office!! Then we went to his favorite place to eat dinner, Texas Roadhouse! He wanted Ribs!! 
It was a GREAT day!!!

I haven't been posting because it brings me back to a place I don't want to go.
I know so many of you are concerned and worried about us. I want to thank you for that. I will try harder to post more, especially now that they are happy good posts!!!

One of them being..... He has lost 3 teeth and one more to come out shortly!!

I think about the last year and the one thing that comes to my mind is.......
Did I thank everyone and is it enough? We have been so blessed by so many of you good good people and there were times that I didn't even remember nor cared what my first name was!!
Everyone who cleaned my house from top to bottom (by the way, it's been a year, you can come back anytime and do it again!!!)
Every meal that was brought in, everyone that took time out of your lives to stop by and check in on us, everyone who couldn't stop by but thought and prayed for us. The money that was donated to us, the care packages, the friendly how are you doing. The fundraiser. The wonderful people who gave us a car so we wouldn't have to have a car payment.
We can't possibly THANK YOU enough. 
Please know how eternally grateful we are.
We have been SO BLESSED.

6 month scan lab results: 

HGB:   14.1    12.9         ??      11.7      10.7    9.5   9.8   10.3   9.2   9.2   8.8   10.8   11.5    11.9   12.3   12.2    12.2   11.7    14.1   14.7  (less then 8 is bad)   
Hct:    41.8%    37.8%   35%  33.2    30.2   27.4    28.6   29.7   26.5   27.1   25.1   31.4   33.5   34.2   34.9     34.3    34.7   33.3   37.6  40.1    (less then 24% is bad)     
WBC:  10.5      4.7         3.6      4.2     2.3       1.9   6.3    3.7   3.9   2.8   1.9   2.6   2.85   3.3   2.8     8.6    3.6     4.3     9.64    6.7      (5.5 is a low normal)

PLTS:   621      288        272    347   280      288   466   168    265   475  319  318  400  378    329     333       311    308   398   270   (less then 30 is bad)    

ANC:   7.6       3.0          2.2     1.5    1.5          .6     2.4    2.3   2.2   .8  1.0   .6   .8    1.2      1.0     5.4    1.3     1.9    6.4  3.4   (less the 1 is bad, less then .5 is really bad)


Wednesday, January 15, 2014

3 month scans

January 13th: 3 month scans

Drum roll please.................

Scans are good!!!!

What a HUGE relief and weight off our shoulders and mind!!!

We first went in and did a urine sample, which came out to be 100% perfect!!! Left Kidney is compensating fabulously!!

Then off to scans.....


Here is a picture of his liver and the "spot" we are watching.........
 It is 1.6 cm long. They gave us quite a scare when they said that it had grown a few cm, but after the tech reviewed the last reports closer, she realized she had measured a different way, so she re measured and it is the same size as 3 months ago. I was one panicked momma, for a minute!!!
I love that he smiles during these, now!!

Off to x-rays-
 x-rays look good, he had a little bit of a cough, but other then that, everything thing looks as it should!

Here is a picture of the staples he has and will always have in his belly......
They are more so in the middle lower belly area. There are about 15 of them. Kind of cool!!
Those are also 3 of the 4 vertebra's that were exposed to direct radiation that will never grow from here on out. The others will grow just fine, so Riley will not be as tall as he should have been before the radiation. He may also develop scoliosis or have other back problems in the 4 areas.

Next and last off all we went to clinic.
The Dr. came in and checked him out, said he looks so amazingly good!! She didn't even order labs because he is doing so good AND because she knows my son and how traumatized he gets, and didn't want to have to do the blood drawn if we didn't have too. I was just fine with that!!

I feel FREE!!!! I can't explain it, but I know that I am going to try my hardest to live these next 3 months. I want to smile and have fun. I want to be a good good mom, not just a mom. I want to get back to doing hair. And loving every minute of life, not just living it waiting for it to go by.

We are so blessed to have Riley and to know that he is now
 92 days cancer free!!!! 

Sunday, January 12, 2014

Pre SCAN days.....

Have you ever wondered.....
Would I like to know when I'm going to die? Or when I'm going to get sick? Or when I'm going to get in an accident?
Thinking, maybe, it would be easier to deal with if I knew first. Or, that you would live your life to the fullest if you knew you were going to die, say your goodbyes, prepare.
Well..... NOT ME.
And especially not for my kids.

I know, I know, scans aren't going to tell me Riley's cancer is back and he is dying. But, they might have some really bad news. Bad news, I don't think I'm ready to deal with.

This is only our first 3 month scan and I knew it would be difficult to prepare for. But this is torture on me.

I was doing pretty good this last week, until Wednesday. I don't know what it was. I was preparing my head and taking care of myself, keeping busy so I don't "go there" when that evening it hit. My body and heart knew what was coming up even though my brain was telling it, it's okay. (not even sure if that makes sense, but that's what it felt like.)

Ever since Wednesday, I have been good during the day, trying to just focus on the house and kids, but come every evening and night, it gets me........

I don't sleep until 2, 4:00 a.m., whatever time exhaustion finally takes over and I give in.
I am trying to loose myself in movies and books. Yesterday, I slept most of the day and when I got up, I had to get out. I said come on, we are all going to dinner, (thanks to a Christmas gift card!!) It was so great, then we took the kids to the pet store! They LOVE going there! As we were getting into the car, I froze. I knew when we were in the store, I didn't want to go home. But as we were loading, I DID NOT WANT TO GO HOME. We put the kids in the car and I pulled Chris to the back, outside and had a little breakdown. I could feel the air leaving my body and I couldn't get it back. I was crying and saying, if we go home then I have to deal with it one more night. One more night of not sleeping, of wondering and thinking and driving myself crazy.
I don't want to go through the next few days of this, but I do, to get it over with.
Chris is amazing and picked me back up and helped me through, until 1 a.m. when he finally fell asleep. 4:30 a.m was the last time I saw on the clock, THANK GOODNESS.

I know what people must be thinking, but please don't tell me to STOP, please don't tell me it's going to be okay, or be strong. Because I've tried to do all those things and nothing helps.

I am a mom who's life can change tomorrow, AGAIN. I am trying to protect my son from a monster that may or may not be back in his body. I am trying to hold a family together, all the while I want to crawl in a hole and just get away from this crap.

I am so selfish that I don't want to play with Riley because every time I look at him, I think, do you have cancer again? When will you be sick again? When will the days end that you stop running around and smiling? When will I loose my boy AGAIN?

I don't know why I think like that. I know it's not good. You would think I would be living it up every day with him. But I'm not and I don't know why. 

I also know, it could be worse. I know and am reminded daily of kids with cancer that WILL take their lives, or have already taken their lives,  people that are disabled, friends and family that don't have jobs, or have teenager problems.


In no way am I EVER saying mine is harder. I am just not dealing very well with my trial that may change TOMORROW.

I am so thankful for prayers and thoughts and love, I sure have needed it!
I will update as soon as I can re: tomorrow's scans. 

Wednesday, January 8, 2014

Riley is simply amazing..... Oct +, catch up time!!!!

Riley amazes me everyday! His body is so strong and continues to grow in strength and weight!! He went from a chubby 54 lb. little boy, to a sick 41lbs, back up to a healthy 53 lb little man!! He has ALL of his hair back and we gave him his first hair cut the other night!! although we COULD NOT shave the back!! I don't blame him!!

He LOVES school and in the morning asks every 10 minutes if it's time to go yet!! He also has new friends that are just around the corner and wants to play all the time!! I love to sit back and listen to him giggle with his buddies! It makes my heart happy!!

In the past 2 and a half months we have been able to do things that we haven't done for a long time! It's so refreshing just to say, we went to the grocery store, or we was able to go on a play date or have friends come over to play!
The best part of all is being able to be around people!!
Riley was able to go trick or treating!!
Riley wanted to be an alien and Hunter is a Zombie thing!!!

We got to go to the Make A Wish Halloween Party!! It was soooo much fun!!!

We also got to go with the Hope Kids of Utah, to Frightmares!! Riley was scared of the Zombies but that's it!!

We also was able to go on Riley's Make A Wish trip to Florida in November!! There are no words for how much fun we had! To this day Riley will say, " I just miss Florida, can we go back?" I wish we could!! There will be another BIG post on that soon!!

Then there was Thanksgiving!!!
He made his own turkey hat at school!!

 Thanksgiving at Great Grandma's!!
This is the first time Riley was able to run and play with cousins all year! He had a ball!!

You would NEVER catch Riley out in the snow for longer then 4 minutes tops!!
Until now!! I can't get him back inside! He sleighs during the day......
 and at night......

We also got a chance to go to the Mac's Gifts Cancer foundation. It was so very special! It was hard to go and see so many kids with illness, but so humbling to know we are getting better!
Santa Cosmo!!
 and of course Santa Claus!!
 The boys got a golden ticket from Santa and could go into his workshop and pick out 1 toy each! Hunter got Lego's and Riley got an Angry Bird alarm clock.... of all things!!!

This foundation is simply amazing. They provided us a Christmas for the kids, they would otherwise not get. We are so blessed to be apart of this wonderful foundation.

Let's just say we had a very emotional Merry Christmas!!
And a very sick New Years!!!
(Riley was throwing up, Hunter had strep, Mom had kidney stones and dad had a cold!!!)

There's just a glimpse at the last 2 1/2 months of Riley's happy, free, exciting life!!
It hasn't gone without some downs for sure. Riley will go through spurts of days or even weeks when he will stay up til 3 or so at night because his body just won't shut off, I think it might some anxiety. He will go through days when he is angry and frustrated and yelling and says he doesn't know why, and about a month ago, he started to get REALLY scared at night, even with Draggy and his lamp on, so this has turned into mom sleeping with him, or him sleeping with mom and dad sleeping in Riley's bed!!! Whatever works and get's us some sleep!!!  You can imagine!!
I just feel like, if I have been struggling, I'm sure he is too but just doesn't know how to handle it, so we'll WORK on things as we go!!

Hunter on the other hand has been struggling himself. He has a problem with going to school. Especially when Riley is sick or has an appointment. I know he is just worried about Riley and is just dealing, but he will fake sick a lot. I'm not sure it it's for attention, or he just needs a break and needs to clear his mind and be home. Were working on that too!!!

As for me, my anxiety is slowly creeping back up due to the upcoming scans in 5 days. I know Riley will be free of this disease, I just don't know when and if were done yet.
I'm not sure if this is mommy instinct's or just fear taking over but I'm trying really hard to stay calm and be positive.
Please pray for Riley and the spot on his liver that it will not end up being cancer and our fears will be put to rest.

2013 Christmas card!

 Here is our Christmas Card......

What a year, but we have learned so much about our strength and our family has grown so much.
We've learned people are good and will step up to the plate for strangers when in need.
We've met new friends and been uplifted by old friends too.
But most of all, we have compassion for people that would not exist with out this trial. Serious compassion that is unbreakable and has forever changed our lives.

Here's to a MUCH easier year in 2014!!!

Finally...... an update!!! (about me) (Riley will be on the next post!)

It's taken me a long time to update, I know. (beware it's long!!)

I have tried many times to write but I just couldn't do it. I guess it's because the way I feel probably wouldn't make sense to most. I have had MANY ups and downs and I guess I could say I lost myself for a while.
Riley is doing absolutely fantastic!!! It's been a long time since I've been able to say those words!!
I have been doing absolutely terrible!! But I am getting better!

I am not going to post any pictures on this post, I want to write about what I've been through as a mom, maybe to help other women out there who are lost like I was/ still am.

After Riley's last chemo treatment and port removal, Things were great! Riley did so amazing and was getting his energy back very quickly! We went on our Make a Wish trip from Nov 3-9 and had the absolute best time that we have ever had in our lives. When we got back, I gave Riley a couple days to recoup, then he started school on Tuesday Nov. 12th. (No, I still don't have the first day of school pic, Riley wouldn't let me take one!)
School went really well, I only had to stay that week with him and the next week he said "Mom, I think I want to go to school by myself, like the other kids do." I said "okay", even though it broke my heart! I knew this was the best thing for all of us.
He got sick about 1 day out of every week for about 4 weeks, and ever since then, he has been just fine.
But, I have not.......
After many many weeks of MAJOR anxiety and some depression, my sister came to me and said this is not right and I NEEDED to see a Dr., she even made the appointment.
I thought to myself, I got on some meds several months ago, why do I feel this way? I shouldn't have to go to the Dr. .........
Oh yes I did!!
I was told I had PTSD, ODC, anxiety and depression.
Looking back, I can see it. I was really struggling, I thought once we had finished chemo, that the hard part was over and we would be on a new path...... it wasn't for me, it had just began.
I went from 100,000 miles an hour to a dead stop.  I was mostly relying on momentum and adrenalin to get me through days and weeks, that eventually caught up to me and It was to much for me to process and handle.
I thought, how do I have PTSD? I didn't go to war and see and do what soldiers do. But I was told that I went through my own kind of war and it will continue, and as a mom I will continue to worry and protect and go through phases of emotions for quit a while.
It started slowly, but got to where every day I would wake up with A and D (anxiety and Depression) or It would slowly creep up on me though out the day and by night time, it would consume me. There were days I would be up most of the night, consumed by fear and what ifs and why, anger, sadness, checking on the boys over and over etc. etc. etc.
Some days I slept all day while the kids were at school. And when they would come home, I would be this blank wall, telling them to fend for themselves. (of course I always made sure they were safe.)
I LOVED them so much and my heart was so full of love for them it was going to burst but then I would ignore their comments or request and they would get on my nerves so bad I wanted to scream.

Some days I would try to wake up Hunter for school and when he would fight me, I would either get really upset with him, other days I would just got climb back in bed and say, "I can't do this today". So the boys would stay home from school and watch a movie and do homework here. Because life was just to much. All the while in bed I would be a nervous wreck about EVERYTHING.
I AM NOT THAT MOM. My kids go to school. They will get a good education and be the best they can be. But right now, it's all I can do to just breath.

About the beginning of December, my anxiety flipped because of the new meds I has switched to and I went from extreme high to a low, but my depression went from lower to EXTREME high.
I would lay there at night and just wait for the darkness to consume me, I would loose myself all day, not doing a thing but feeling exhausted. I didn't care if I eat or got dressed, I especially didn't care about Christmas and putting up the tree and decorations. Chris and the boys did it all as I sat on the couch in a daze, not caring one bit. THINGS did not matter to me. I never really went shopping. Or cleaned. I would have a breakdown every day. I was falling apart at an extremely fast rate.
I dragged myself to a store because I was told to get out and go look for this one item, while I was in there, I heard a girl say, "mom, I really really want this coat.... I don't like the one I have". I was so infuriated. I thought you little brat, you already have a coat but you don't like it.... boo hoo. There are people out there with no coat at all. Needless to say, I dropped everything and left before I said it to her face.
I didn't care about friends or family or ANYTHING.
 We don't have excess money, but I didn't care, sometimes it was to much to make a sandwich, but I could drive to the drive up window and order a cheeseburger and a LARGE Dr.Pepper. This is not me, I am not careless with our money, especially right now when we have to use fundraiser money to make ends meet.

I knew it was time to go back to the Dr. when my husband told me that I needed to get it together. AND, while one day my sister was over and I was making something in the kitchen and I just cried and cried, saying, I don't know what is wrong with me, I'm just so sad.
YEP, we called the Dr.!!

For about 2 and a half weeks, I have been on a new med!!
I think I am finally leveling out!!
I never knew what it meant to be "crazy" as I sometimes refer to myself or as others refer to people like "me"! But in reality were NOT crazy, we are depleted. I am so glad to have such a wonderful Dr. who can explain things in such great detail that I understand why I feel the way I feel, that I can go to and let him know when my levels are off. I wish A and D was not so hard for people to talk about. I wish it was as simple and easy to talk about as a tooth ache. I wish I didn't know how wonderful Dr. Chad Parrish at Salem Hills Medical clinic is!! But I'm glad I can express myself and help anyone who might be struggling too.

To all the friends and family that I have ignored or hurt feelings with my absence. I am sorry. I am working on it and will be okay, one day!!  Please be patient with me.

Through all of this, one thing stayed the same, my compassion and care for others. I wanted to help the world even if I couldn't function. I wanted to help the needy, and we did, somehow! And it was a great feeling and lesson for my kids. It wasn't much, AT ALL. But it warmed our hearts and let us remember Jesus and what Christmas is about.
AND in return, we were blessed and helped too. Thank you to the many people who dropped stuff off,  from cookies to lasagna, money, or just a card. We have been watched over and blessed every step of the way. Thank YOU.