Updates....

Today while i was running at the gym i was watching the Jr. high kids leave school for the day and i got to thinking about my kids and what they would be doing and look like at that age... That started my train of thought and took me back to when i first found out i was pregnant with koda! It's such an exciting time and i think most people picture their child as healthy, beautiful, playing football or taking dance and having this ideal family life, atleast i did, i never, ever thought of anything negative that could happen to them in their lives, i knew that i would take care of them and do my best to make their life amazing. Then you get smacked in the face with the word CANCER. It could be anything though, not just cancer, it could be autism, downs symdrome etc.... regardless of the diagnosis it hurts like hell as a parent.

My mind is going a million miles an hour today due to finding out that koda's sweet cancer friend, Brielle, relapsed. It makes me angry. She is one of the strongest, sunshiny little girls i have ever had the pleasure of meeting! It's days like today that i just have to pull over the car and cry for her and her family because i can not even begin to imagine the agony they must be feeling hearing this news about their daughter that they likely once imagined the way that i imagined koda before he was born; healthy and perfect...INVINCIBLE

There are some positives to going through this roller coaster ride with koda, the parents and other cancer fighters that i have been blessed with meeting have simply changed my life for the best! I have learned and continue to learn priceless lessons through this that i can't even express my gratitude for. Most days this is just normal life to me, the medicine, the hand sanitizer and constant hand washing, the throwing up, the couch days etc... but some times those days creep up on me that hurt me to my very core to think of what hell these sweet kids endure and most of them can't even explain it, that is just the only life they know. These kids, hands down, are all my heroes, i hope to be as brave and strong as they are one day!

Make the most of every single day, every single minute you have with your parents, your kids, your spouse, whoever it is that you love. You cant get time back that you have lost

Ok now i am done with my venting! Updates on koda over the last few months:

In september, koda was admitted into ICS for a few days and he was so brave! My parents are the greatest for taking over caring for gracie completely, it was so unexpected and they just dropped everything and helped out so much! The visitors made koda so happy so thank you to those of you who visited us! While we were there koda's line on his port got clotted, we found out a few weeks later when he went in for chemo and they couldn't get anything to go in, we were there i think about 7 or 8 hours that day, they had to do multiple tests to try to save his port so he wouldn't have to have surgery and have it replaced. Sadly he did have to have it replaced the following week. This kid just amazes me, he couldn't eat at all the day of the surgery, but he watched gracie eat that morning, he asked for a drink once and i explained to him why he couldn't eat or drink and he left it at that, didn't say another word! The surgery went well and he now has a new, bigger "shiny" port as he would call it!

Hyundai has a program called Hope on Wheels which a portion of their profit goes to research for childhood cancer and one of the days we were there for chemo, Hyundai happened to be there for a news conference and to deliver a check to the hospital. They asked koda if he wanted to participate in this, we feel so lucky! Koda got to put his hands in paint and put it on some canvas, along with a few other cuties, and they will now make them into plastic molds and place them on cars all over the country to spread awareness of childhood cancer. I can't even express how much it means to me that they are doing this!

I do need to say that i am beyond grateful for how amazingly well koda is still doing with fighting this nasty cancer! We are so blessed! I have the most amazing family and friends that surround me and have helped me through my up's and down's!

4 hours!

Yes! I am so proud of myself for making time to do this again!

Koda and i started our journey out to primary children's this morning at 8:30 and there was so much stinkin traffic! We didn't get there until 9:15 ish... Koda was so brave today getting his pokie, but the nurse accessing him couldn't get the needle to go in for some odd reason, he said it felt like he was only hitting metal (the port has a soft middle and metal outsides) so the nurse was worried that the port had flipped over, meaning that koda would have to get surgery and get the port replaced, ugh...i was panicking, he already has a monster scar! The nurse re-gloved and got a new needle and gave it another shot and this time had sucsess! It's always so horrifying when things like this come up and i wonder to myself, what more does this child seriously have to go through? Anyway, they drew his blood and his counts came back just where they wanted them!   WBC:2.1, HCT:37, PLT:275, ANC:1.3 and he now weighs 35 pounds!

His chemo wasn't ready when it was time for us to head down to the RTU at 11 so they told us to come back up after his spinal tap. They were a little behind down in the RTU so we just played and i met another incredible cancer mom, Erin and her son Kace who also has leukemia! Koda kept complaining and saying that he was so tired and just wanted to take his "little nap" (sedation) so needless to say it took him a while to wake up from the anesthesia today. He woke up and asked for apple juice, string cheese, and a slushy! He got all three and was a joyful boy, poor thing coulnd't eat until after is spinal tap/spinal chemo. Back up to clinic after that and koda got his vincristine chemo and played with Kace a little and we were off! I had to drag him outta there, he was so mad to have to leave! A huge thank you to primary children's for making it such an enjoyable place for these sweet kids! Today was the longest we have been at the hospital since the delayed instensification days... a little over 4 hours today! Not too bad though!

 Koda trying to wake up after his spinal tap and spinal chemo

Koda and Kace... This is the ONLY one that turned out somewhat after 10 attempts on my camera!

I saw this quote on my friend, Becca's, blog and wanted to share it , it has so much meaning in my life! Thanks Becca!

"BLESSINGS
I asked for a miracle,
I got one.
It wasn't what i asked for,
But it was exactly
WHAT I NEEDED."

Koda is such a tender hearted little boy, it causes me grief on the days that i look at him and think "cancer", seriously? How can such a little body have CANCER? But i think it has humbled me immensley, this child has been through so much yet he is such a happy, loving child! I want to be a tougher person because of him! I know that he is going through this for a reason, i have no doubt about it, I know my father in heaven places certain trials in our lives for our own refinement and to make us who he wants us to be and for us to learn the things he wants us to learn, maybe it was for me? Maybe it was WHAT I NEEDED as said in that quote above...I can't wait until the day that i can find out the meaning of this trial in my sweet baby's life! He is going to be such a strong, empathetic person because of this! I love him! I need to also say that i KNOW things with koda COULD be so much worse than they are, i want to express my gratefulness to my father in heaven for the blessings that have been poured down upon koda and gracie and I, Koda is doing exceptionally well with the trials he has been given and i am so grateful!

Life is like a box of chocolates....

I could say that i have a million reasons why i have not updated this since october but there really isn't a good enough reason. I got sent home early from work today and so i am taking advantage of that and getting things done, i haven't had a real break in time like this since atleast november sometime, enjoying it!

A little update and by little, i mean very little... Sam and i just recently got divorced, he moved out in november and decided that this was what was best for the family, it has been and is continually heart wrenching for me to say the least, and i started working at a local medical billing office about a month ago! I am trying to stay positive despite the trials that have been placed in my life, I know that if i stay faithful and do what is right that i will be blessed, i know the Lord will take care of my kids and I!

Now onto the more important things... the kiddos!!!!

 Koda and I at the make a wish christmas party last december! We got the opportunity to ride on the train at Heber valley railroad!

                                                   The sweetest things on christmas eve

 Our surprise visit to grandma "oh say" and grandpa "strength" in Fresno, CA in January, it was a much needed amazing break! My family is THE greatest!

 Cancer cuties play date at wheeler farm this month! Blast!

 Easter egg coloring

Gracie checking out everyone's baskets! mmm

That is just a teeny tiny update on what we have been up to the past few months. When i got back on this blog site for the first time in months today my heart just hurt looking at the picture of Koda when he was opening his make a wish box, he looks so happy, i am fighting back the tears as i type this, nope now they are a-flowin.....i just want him to be so happy and i know he is but he has been handed so stinkin much to deal with in his short three years, that look on his face, i want to achieve that every day!

Koda has been doing very well with his chemo, he still has some odd reactions to the chemo some times and gets nauseous quite often but besides that, looking at him, you would never know the things he has been through and is going through! I feel so blessed every day that i am surrounded by the presence of these two amazing, smart, strong children in my life! They have taught me so much about strength, forgiveness, unconditional love and perserverance... i honestly can say that i am a better person for being able to be their mom!

Make A Wish

Koda was referred to the Make A Wish foundation and was selected to be able to participate in the program! He was so excited when he recieved a box from them in the mail. It was a little tower and in the box was a key. He will use this key at the Make A Wish building when he goes in to make his wish. He will go into the wishing tower and has to use this key to be able to unlock to door to get in! They make this experience so special for these kids and i am so very grateful that Koda gets to do this. He certainly deserves it!

When the director from Make A Wish called me and explained that he qualified and the things that were to come in this process i couldn't help but cry...on the phone, it just makes me so happy knowing that Koda gets to wish for what he wants most and they will do what they can to make this wish come true. He has been through entirely too much in his 2 short years of life and he more than deserves this, i am so happy for him!

I have been trying to explain the process to Koda by saying...."ok koda, do you know how you have to go to the doctors all the time and you get pokies all the time and they give your fishy (port) drinks (chemo) all the time, and you have to take medicine all the time, and have this scar? Koda this isn't what kids usually have to do... you are special and you are truly a super hero and these people want you to wish for whatever you want to wish for and they will do their best for you"  I'm hoping he understands! Right now i ask koda "if you could have anything you wanted what would you get?"

Koda: trucks, monster trucks, and a dump truck

Me: If you could meet any one in the world who would it be?

Koda: Pluto

Me: If you could go anywhere in the world where would you go?

Koda: To get more trucks and dump trucks

So... we shall see how this goes. In 2-3 weeks we will be meeting with his wish granters so they can talk to Koda and get to know him and figure what his true wish would be! Can't wait!

Enough hair for this?

Yeah that's right! Koda now has enough hair for an actual haircut! He was starting to get these wings on both sides that swooshed back so we cut his hair for fun! He sat pretty still..... Hair is overrated we say, you have to keep it up.... Bald is Best!

We are still here!

Wow I have been THE worst blog person yet! I can't believe it has been over 3 months!

Well, Koda has been in Maintenance (going in for chemo one time a month, spinal tap and chemo once every three months, chemo pill at home every day) for three months now! It has been very easy for me to let life seem normal again, like we didn't REALLY have a child with cancer.... Until his very first fever last week... that was heart breaking. He just layed on the couch all day and said he felt very yucky. His fever reached 101.5, we took him to the ER and if his ANC was 500 or below we would be admitted to the hospital until 24 hours after the fever had cleared. Luckily he was at 700 but we had to go back in to clinic the following day to check on him. His ANC had dropped from 2000 to 700 in 4 days from him getting sick, scary! They pretty much just gave him an antibiotic through his port just to cover all the bases. We never figured out what he had but it was gone within 2 days! This was a huge wake up call for us... our life is NOT normal, this was NOT just a nightmare, and we still have to be super careful!

We had to go get a blood draw again today to see if his ANC has gone back up yet (they had us stop his chemo pills until it got back up so if he was very sick he could somewhat fight it) and we had to go into the local hospital so they had to draw it from a vein in his arm and this little super kid did not even flinch, squirm or cry. This truly shows how strong and amazing these kids are and how much pain they endure!

It has been so great to see Koda's hair again and we are getting to a point where we can actually spike it and do it all studly!

So all in all it has been a decent three months, maintenance is great but still not what you want to see your child going through. Still the sick, laying on the couch days, but it's better than it was the previous 6 months! We feel endlessly blessed and wish we could thank every single person we do and don't know for all they have done for us. THANK YOU ALL!

Just for fun...

For those of you far away that rarely or haven't seen this princess... Gracelyn 4 months old... covered in rice cereal! Her first time attempting to eat it

"If my mind can conceive it, and my heart can believe it, i KNOW i can achieve it"

There have been many emotional up's and down's these past few weeks. Koda got a new baby sister Gracelyn on June 16 and she has been so great for him. He loves her so much, he always wants to help with everything from getting her diapers to holding her bottle for her. Everytime he sees her he ooh's and aah's. He is the greatest big brother in the world!

Koda made counts for clinic last weds june 7. So in we went, with gracelyn in tow. Koda recieved cyclophosphamide which was pumped through an IV through his port for an hour. He recieved Cytarabine and also had a spinal tap and methotrexate in his spine. He also started Thioguanine which is a pill form of chemo he takes at home for 2 weeks.

Koda was left accessed and Sam and I were taught how to give koda his chemo. We gave him his cytarabine and a nausea medicine through his port that thursday friday and saturday. Home care came and deaccessed him on saturday. At first i did not want any part of putting this nasty stuff into his body but then thinking about it i realized that this nasty stuff is saving his life and keeping our sweet little koda here with us. Koda did really good with letting us do this, he just sat on the couch and would watch movies!

I took koda to clinic again today, June 14 where they reaccessed him and gave him nausea medicine and his first dose of Cytarabine and left him accessed again. Sam and i will be doing his chemo again until saturday. His wonderful Dr. Bruggers is amazing she said koda has done so well through this whole process. She is very positive and helps us stay that way! She told me that Koda's counts will only continue to drop for the next 3 plus weeks and that we need to be extremely careful and watchful of him, especially with his immunity. His counts from today were  Red blood cells: 25,000  (they were considering keeping us for transfusions, they do them between 20,000-25,000, but they are having a blood draw on monday where we are 99% positive to go in for blood since his counts are only going to drop)  Platelets:  93,000  ANC: 600

We are surely seeing the light at the end of the tunnel now, koda has these four days of chemo and another week of his chemo pill and then after a short break he will start the Maintenance phase! I honestly cannot believe that we made it. I remember in January thinking that we would never get here, i couldn't emotionally do it. But i know that the Lord only gives you trials that he knows you have the strength to endure. Don't get me wrong, i have my almost daily break downs, watching koda not have energy to do anything but lay on the couch and watch movies, feeling his smooth bald head, seeing his eyelashes fall out. It's heartbreaking but i know it could be worse, we are lucky and endlessly blessed, we have the most amazing people in our lives that do endless things for koda and people we don't even know who have been so giving. Thanks to everyone we hope to one day pay it forward! Koda is so loved and we appreciate everyone!

*Koda at only two and a half has learned how to swallow a pill! Amazing Kid

*Before Gracelyn was born, i was holding koda and he said 'angel' and i asked him where the angel was and koda pointed by our fireplace and said 'right there' i asked him who the angel was and he said 'prophet'

*Koda pointed at his port and said 'port, chemo' it is truly sad that at his age he knows what chemo is.

                                                                Koda and Gracelyn