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

Just a quick update.... koda was supposed to go in yesterday for chemo but his ANC count was too low at 300, they want it at atleast 750 so we are shooting for next Weds.

"Jesus doesn't always protect us form the unpleasant things in life, since they are a part of what we are on earth to experience. However, He does shield us from fear in those dark times and delivers us from having to face those difficulties alone."
-Brad Wilcox


Delayed Intensification.....where to start..... Koda's first appointment with this phase was last Weds June 2. Home care came and took his counts on the 1st and he was good to go. Red cells:  39,800   Platelets:  229,000   ANC:  1,900. At clinic on june 2nd koda had vincristine, doxorubicin (which is really damaging to the heart) and methotrexate in his spine. Even writing this makes me cringe. Koda did very very well, he didn't cry for the first time while they accessed him, sam covered his eyes and he didn't even make a peep. He also started steroids this first day.

Monday June 7 Koda went in again for a PEG shot of chemo in his leg, this was horrible to have to watch because he is getting used to the port thing then they all of a sudden attack his leg. We had to stay for an hour after the shot so they could watch him, i guess it's common to have allergic reactions, but he did fine!

Wednesday June 9 we went in to clinic yet again (yes, 3 times in a week). Koda got vincristine and doxorubicin again. He had a very very hard time with them accessing him this time he was very scared and i'm thinking the shot a couple of days before might have thrown things off a bit. It's really hard to look at him while he is saying 'owie, scared' and say 'your brave, it will be fast and easy' when i don't even know what it is like to have this done, it breaks my heart. His counts from today were  Red cells: 37,700  Platelets: 317,000   ANC: 3,400 and yes i can say we were completely shocked with these high counts with having chemo so much but i guess the yucky steroids do do something good which is raise their counts.

Steroids:
Koda took them for 7 days and this was a great little reminder of how much i HATE them.
He got very bad rage, nothing would make him happy. Screaming was almost a constant, all day event. He would scream for one thing, we would do it, then he would scream for the opposite and go back and forth this way for a while. It is very hard to stay patient and calm with him and trying to remember that THIS IS NOT KODA, THIS IS STEROIDS. It's hard not to constantly want to put him in time out for smacking himself or us. We have a week off of them and then we start for another week on june 16, not looking forward to it.

I look at koda every day and am reminded that he is my hero. He willingly accepted this trial to take upon himself before he came to this earth and i admire him so much. His little body has been through SO MUCH, i don't ever want to complain again. I feel like i can do almost anything now seeing what this sweet little 2 year old does with no complaints.  A couple of weeks ago i was holding koda and he turned and faced me and was staring intently at my eyes and said 'spiders...all over' and touched my eyelashes. He is so sweet and fun! It's so fun to see how a 2 year old sees things. Koda also this week has learned that his birthday is 'february twenty three', when asked when his birthday is that's his reply. He is such a smart boy! I feel so blessed every day that i get to have him as my son.

Coming up:
Next weds we have clinic again and then a two week break if his counts are good, if not, then a 3 week break. The appointment that is count dependant is very yucky stuff i don't know all exactly what he is getting but one of the chemo's (i will find the name and let you know later) is pumped through koda for an hour, his oncologist said with this chemo he will lose ANY HAIR ON HIM HE HAS LEFT, oh boy, stab stab stab, this will make reality sink in more. Please keep koda in your prayers, he needs the health and strength to get through these next few weeks.

 "Strength does not come from winning. Your struggles develop your strengths.When you go through hardships and decide not to give up, that is strength." -Arnold Schwarzenegger

Koda had some struggles with walking again this last week... it seems to be mainly his right foot, he picks it up and says his feet hurt and won't walk. I mean, we have seen it be worse a couple of weeks ago when his legs just gave out on him a few times and he just collapsed, it's very sad and scary. The nurses told us to keep an eye on him and make sure it's not a constant thing. Most likely what it would be caused from is the vicristine, it causes neuropathy... which is like a constant tingley numbness. I am really hoping it doesn't get any worse because they will have to lower his dose of vincristine and the effects and feeling can stay with him for a year after he is done.

Home care came sunday night to check his counts and they were great!  Red blood cells:  34,700   Platelets: 373,000  ANC: 2,000   Koda really is recuperating very well! His platelet count has not been that high since i can even remember. Way to go tough dude!

We went to clinic on monday morning, koda got vincristine and his last upped dose of methotrexate, hooray! I can not wait for the day though that koda won't be scared when they access him, it is heartbreaking, it is not easy to see and hear your child saying they are scared and just sitting there and not helping them. I brought the movie cars for koda to watch while he got his chemo since that is his all time fave and we watch it every day. This kid is such a great example of humility, courage, strength and love... he makes me happy every day. We had cars playing and koda decided to wander but he could still hear the movie.... we found out that he has it memorized... out of the blue we hear him say  "no camera's, no camera's" and we were thinking 'what is he talking about?' and two seconds later we hear on the movie "no camera's"  He is such a smart, funny little guy and he is truly a hero in my eyes. However i might consider turning on some different movies for him, maybe. Tuesday koda was pretty sick from his chemo... i thought we were going to make it through all this methotrexate with no sickness. He has been throwing up and it is heartbreaking. We will see what today brings.

Koda now gets a two week break before we start DELAYED INTENSIFICATION. We are scheduled to start on June 2 but day 1 of this phase is count dependant so we may or may not start on time. Day 1 will consist of vincristine, doxorubicin (i don't think he has had this yet), spinal tap and starting steroids yet again. The first week of this phase we will go in 3 times for chemo, yuck. How it works is that this phase is 42 days in length and they do the scheduled chemo depending on what day of the phase it is, so day 1 is all that yucky stuff, then day 5 he will go in for a PEG shot in his leg and then day 8 for vincristine and doxorubicin again. Please keep koda in your prayers during this phase, it will likely continue to completely wipe him out, that is the goal for them is to wipe him out before maintenance.

*****P.S. Sorry for the in depth descriptions and long posts, i will be using all this info for a book for koda so i put it all in there!*****

"God places the heaviest burden on those who can carry it's weight"

-Reggie White

Koda is such a fighter and so strong.... Last chemo dose affected him until we went in for chemo again and i feel so horrible that i can't make it better for him.

We had home care come last thursday and i was hoping and hoping that his counts would be too low to go in for chemo the next day (since the last dose was still affecting him i figured his counts had to be low), boy we were wrong! His red blood cells: 38,000   Platelets:253,000   ANC: 1,700    Seriously this child amazes me, his little body is working so very hard, the chemo totally wiped him out and his little body brought all these counts up on it's own! That is great progress!

We went in to get chemo and a spinal tap on friday, so koda couldn't eat when he woke up until about 1:00 but he did really well, he wasn't thinking about food much at all. The chemo went well... they upped the dose of the methotrexate another 50%, got vincristine and a spinal tap with more methotrexate in there. He did very very well with waking up with sedation, i was very worried about that because the last couple of times he was coming out of it he was very angry, and now i figure it was because he was being sedated every week, that CAN NOT be good for a little body or be fun at all. I think the break did him well... he was happy and laughing and playing after he woke up it was great! We have one more appointment in this phase where they will up the dose of the methotrexate another 50% and then koda will get a 16 day break! This last dose is making koda feel pretty miserable it seems, he is being so sensitive and just frustrated, wish so bad we could help him. And then at that point, after his 16 day break if his counts are where they want them he will start his next phase........... delayed intensification... this is the devil phase as i consider it. It is going to be nasty stuff..... 8 different kinds of chemo when the max he has ever had is 3 different kinds and it's about 42 days long with no set backs. Please keep koda in your prayers during this time, he will need it. I know koda will be strong through the rest of this and he will make it!

Koda is so fun and silly, last week was my birthday and i turned the big 2-4 and sam was preparing koda telling him to call me a "fogie" he ended up pronoucing it "froggie" and he would laugh his head off every time he called mom a froggie! A few days later he called mom a goat and then a turtle! It's so funny how kids interpret things, he is the best!