"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!

There is nothing better in the WORLD than being this kid's mom....

There is no way that i could ever go through what he goes through, he is amazing and i wish he could understand my words when i tell him that. In his two years of life he has been through more pain and confusion than i have in 24 years.... he is the person i look up to every day. He never judges, he always forgives me for my shortfalls as a mom, he is perfect! He is my angel.

Home care came on tuesday and his counts were   Red blood cells:37,800   Platelets:308,000    ANC:800  so he barely made counts to be able to do his chemo. We went in on weds and it went fine he played and enjoyed himself... just not so fine now, i can't stand seeing koda have to go through this...i have the hardest time. They upped the dose of his methotrexate 50% again and it just does not affect him well. I wish he could explain to me how he felt so i could help him in some way. He acts so frustrated and he just doesn't know what he wants at all... i know he is in pain and it is killing me, i want this over with... He has 2 more times of going in that they will up his dose another 50% each time. Next time he also has a spinal tap, yuck. We have been fighting this battle 3 months and 4 days now.... we can do anything!

What God hath promised
By Annie Johnson Flint

God hath not promised
skies always blue,
flower-strewn pathways
all our lives through;
God hath not promised
sun without rain,
joy without sorrow,
peace without pain.

But God hath promised
strength for the day,
rest for the labor,
light for the way,
grace for the trials,
help from above,
unfailing sympathy,
undying love.

Home care came yesterday to take koda's blood to see if his counts were high enough to go in today for chemo....they weren't.....it's a bittersweet thing because it's horrible to have to be put behind another week but it's heartbreaking to go watch this be done to him. Home care will come out again next tuesday and if his counts are better we will go in on wednesday.

 His counts this week were   Red blood cells: 36,200 (those are normal)  Platelets: 272,000 (those are normal also)  ANC{immunity}: 400 (this is what got him) They won't do the chemo unless his ANC is at 750 because 750 is still way way low and puts him at a high risk for catching anything and if he were to go in at 400 and up the dose of chemo too it would completely wipe him out and then most likely go for his blood cells and platelets also. So we will be praying for his ANC to go up so we can get this show on the road. Unfortunatley there is nothing we can do to help it go up, it's just chance.

After koda's chemo last time he had a really really hard time for about 5 days after, he all around just didn't feel well, so i am not looking forward to another upped dose but we have no choice so we will just try to make the best of it! I just wish there was something i could do to comfort him and take this away for him, it's so hard to see him so sick and so frustrated, but again.... we will do our best to make the best of it for koda!

Home care came on sunday to check koda's blood counts to see if they were good enough for him to do chemo monday morning. Koda is so brave, she had to poke him twice because she didn't get enough blood and he handled it like a champ! His counts were:      Red blood cells:35,000   Platelets:319,000  so after his last chemo he recovered pretty well!

Clinic yesterday went well, koda is still kinda scared when they access his port but he is getting better, they gave him 2 kinds of chemo again... vincristine and methotrexate (which they upped the dose 50% from the last visit, they will do this every visit, that's why his counts matter, they don't want to completely wipe him out) He was running around the place pushing a toy shopping cart acting like he owned the place. It was the first time i have gone to these visits by myself and boy i realized how out of shape i am. They give him his methotrexate over 20 minutes so he was hooked up to an IV tower for those 20 minutes and yes he was running the entire time, the tube that hooks into him is only a couple feet long so i had to be behind him every step, it came close to being ripped out a couple of times and we had our fair share of him getting tangled in the tube. He had to go and say hi to everyone there and was being so friendly. It was quite an experience. It amazes me that he acts as if nothing is wrong and nothing is happening, he just continues to enjoy life. I learn alot from koda every day.

I am having such a hard time lately, those quiet moments really make it hard, i have a problem with sitting and thinking.... thinking why? why does my two year old have to have cancer? Why does his little body have to be injected with all these chemicals that can cause long term possibly permanent side affects? I see old pictures from when he was still just a little babe and wonder why, look at that little innocent smile, he didn't do anything wrong, what did he do to have to go through this? I do know that it is for a reason that i'm not aware of yet but those quiet moments always get the best of me.

I'm not sure if all this wondering and thinking is because our little girl is not too far from making her appearance and it just is too hard to think about, what if something like this happens to her? It is so extremely heart breaking every day. Life is very unexpected and it certainly is a roller coaster every day in every persons life. We all just need to keep in mind that whatever happens in our lives is in the Lord's hands and that he has a plan for all of us, whatever we go through is to learn and grow, we most of the time do not want to see it that way at the time, but usually you can always look back on that trial and be grateful to the Lord for the trial he placed in your life to help you out at the present time in your life.

Just a little quote for you to read:
"It's hard to live with unanswered questions. It's difficult to be crying out in the darkness of hardship, and yet trust that God knows and cares. But doubting or denying God will not remove the darkness. In fact, it makes the darkness even darker because now you feel alone in your doubts.



"There is so much we don't understand, why should we be surprised that we cannot understand our own struggles and difficulties. Would denying God give us a more satisfactory answer to our questions? Do our problems make a case for there not being a God, or do they underscore our need to humble ourselves before God, trusting he knows our needs and can redeem our life?" -Dave Burkum in Minneapolis/St. Paul...



Clinic this week went really really well, for the first time while being accessed in his port he only cried for half a second and then moved on. For the past two months it has been him being so scared and crying from the time the nurse walked in to a few minutes after they put the needle in. This poor kid has just associated the whole process with so much pain. It is so great to see that he is finally getting somewhat used to this and realizing that they are not going to hurt him anymore.

He had 2 different kinds of chemo, which were vincristine and methotrexate (which they had pumping through him for 15 minutes) this one made him kinda sick yesterday. During this phase we go in every 10 days instead of every 7. They will send out home care to get his counts the day before his appointment because every appt during this phase is count dependant. They want his counts low (that way they know it's working) but if they are too low they will give him another 4 days off to try to get his counts back up. This whole phase is so count dependant because every time we go in his dosage of the methotrexate will go up. They do this just as an aggressive thing.

Koda also had a cardiology appointment this week to check again for the cardio myoapathy. His heart showed normal function again so they are ruling that out (thank goodness). They did an ultrasound on his heart and an EKG, during the ultrasound koda looked over and saw the screen and said "baby tummy", this child just makes my day every day, he is so funny and so smart! He has never seen an ultrasound done just a picture of one.

We colored easter eggs the other day, koda's first time, he thought is was really cool!

Koda being silly, he had fun putting stickers on his face and the table

Koda chewing on his endless supply of treats, he is so spoiled, but he deserves every bit of it!

We feel so completely blessed every day of our lives, the Lord's hand is in our lives daily and i do not have a doubt about that, i feel it constantly. We have so many amazing wonderful angels and people that surround us, we are so eternally grateful for how much the Lord is looking out for us during this trial

We honestly have the most amazing family and friends and we are so grateful for everything that everyone has done for us and continues to do.
This last sunday grandma and grandpa Hollberg organized a private easter egg hunt for koda, it turned out to be a blast. I cannot even express the joy that this brought to koda and from that the immense joy and happiness that it brought to me, it makes me want to cry even thinking about it. Watching him i could tell that he actually felt like a 'normal' kid again, he has been cooped up and only allowed to go in the car and to the hospital the last 2 months, so getting outside and having this whole day for him made him so happy!

He not only got his favorite treats, suckers and tootsie rolls (which when he found those he screamed out of excitement "STRENGTH", inside thing, and we all thought he was hurt from how loud he screamed), he also got a BIG RED WAGON!

The look on his face was priceless, he loves this thing and is constantly asking for his 'new wagon' to play with, he can't stop thinking about it!

He also loved swinging with his great grandpa!

And coming down the slides to be caught by his great grandma made him so happy!

On a side note we had home care come today to take a complete blood count to see if koda is able to start his next phase of chemo tomorrow, interm maintenance. His counts are: White blood cells: 3,200 Red blood cells: 36,900 and Platelets: 274,000 so he is good to go in tomorrow, it's a bittersweet thing, i do HATE HATE HATE going in but i would rather not be put back a week, i want to get this kid to maintenace asap so he can have a semi normal life again. I was grateful for the week off though, i could tell it made koda happy!

Thank you so so very much to the wonderful family that organized this special day for koda, i know that it made a huge difference in his life and in mine! We will forever remember it and be grateful!