Driving... and Santa

As I was drivng by myself today, these 2 songs came on back to back. It was like the "Aha" moment for me. My little boys will always be my babies. I pray that I can raise 2 wonderful boys, that are kind, understanding, have happiness, and a lot of love.

 

 

Though I often feel like our family is going through hell, we keep going. We try not to let this evil bring us down. We try to be positive, not to show to other we are scared. Truth is we are all scared shit less. But I hope and pray we can keep our spirits high and make it through this stronger than ever! I know Carson has show so many strength  that know one has ever seen. He is amazing. Blake makes us all laugh and has a personality that can make anyone feel like it will all be okay.

Carson did not make his blood count number again this week. It is a relief and worry all in one. We worry that not having chemo will let the cancer grow, but a relief we get to have another 7 day break! I can tell you how excited Carson was to see Santa yesterday. He has been excited about Christmas but not as much as he was yesterday. He had a glow in his eye that I have never seen before. It made my heart MELT. It brought so much joy to Brant and I to see him be so happy, and excited. Blake was not sure what was going on and had stranger danger alert on his little mind.

 

 

 

I know I am their mom, but really they are the best looking kids ever! :)

We wish that everyone has a very Merry Christmas and enjoys every second of this holiday season!



1 day left of Delayed intensification

We made it! Delayed intensification  (or DI in cancer world) is almost over. We were very worried that this would be a horrible 6 weeks. It was bad, but not horrible. Carson was super emotional. He doesn't understand why thing are happening. I try my best to explain them in 3 year old terms but lets face it, he doesn't understand. Blake doesn't either. It was a rough 6 weeks; more so because we were house bound for most of it. Carson ANC(or white solider cell) was low the entire time. This week he is still at 200; meaning he could has pretty much nothing to fight off a common cold, flu, or bacteria.

Carson, Blake and myself have gone stir crazy.

 

The last 2 weeks I did Carson Chemo at home he had it on Thursday, Friday, Saturday and Sunday. Our plan was to leave his port accessed Thursday-Sunday. Of course Carson being as active as he is, it was impossible. The nurse said it was a much bigger risk if he was to break the needle off in his port rather than to access him daily.  I am lucky that my cousin married a very nice girl Audri( a nurse) who offered to help us anytime. I took her up on that the first Sunday. I am trained to access his port but the thought of it scared me. So we went to Jeff and Audri's house and she did it with out a hitch. Once she did it I figured I needed to "tuff-en" up and do it as well. So the 2nd week I accessed him all on my own, talk about NERVOUS! Carson did amazing, never cried or anything. He always says "it going to hurt" I try not to lie to him and say "yes only for a minute". Him and I made a great team. His port is very easy to access, I got it every time on my first try, and was happy to see a blood return each time!  He loves to push in his medication, all of them including the Chemo. The nurses at PCMC always let him, and tell me the more control he has the better attitude he will have about it, so we let him do it!

 

I asked my dad to take some picture of me doing his chemo at home... he took a couple and then said he couldn't watch it, he didn't like seeing his grandson being poked. So this is all I have of his "at home chemo"

 



I let him go outside for a little bit. He was very excited! I asked him to take a picture and he did his "cheesy" smile!

I am always searching for ideas to keep the kids busy while we are home bound. I got some butcher paper and let them have at it with some finger paint! They enjoyed it.

 

 



Brant was able to make the boys a "hut" out of some extra PVC pipe he had in the garage. Blake and Carson love it. Carson like to take his nap in it. 

Before he got sick, he would never wear a band-aid. Now he loves them. He thinks any time he bumps any part of his body he has to put a band-aid on it.

 

I know from the outside looking in it seems like we are "normal" but reality is we are not. We are 7 months down and 23 more to go. I worry about things that a "normal" mom would not. I think about things most people do not. It isn't an easy road. I try to blog about the happier times, because honestly I don't want to remember the sad, bad, stressful, and down right awful times. Each day is a battle not only with Carson, but for myself inside. I wonder why Carson got this horrible cancer, but at the same time wonder why he is doing so good compared to other kids going through the same things. I have been blessed to be part of a "cancer moms group" that allows me to connect with other moms who have children with cancer. There are families on there who have 2 kids that are battling cancer. In the past 2 months we have lost 2 of the moms on our board. There are kids that are faced with hospital stays of 100 + days, or months even. To me yes Carson got a "rough" road but it could be a whole lot worse, I am thankful it is not. I try to stay positive and the more I stay positive I think the better it is for Carson and everyone around us.

 

 

Here is a quotes I like...

 

"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell." -Lance Armstrong 

 

 This is so true! I have to have hope, everyone does. We have no other choice than to fight like hell and make it through this!



Update November 9th, 2012

I wanted to start with an explanation of his treatment... a fellow cancer mom did an amazing job explaining it HUMAN terms. Explanation on Carson's Treatment...

The first 8 months (give or take, depending on if there are any delays) are very similar to other cancer treatments.

The initial goal is to kill the cancer. That happens during the fist 28 days, called induction. They call it that because the goal of induction is to induce remission. But because blood is such a fast growing cell, remission is not an end goal,

like it is with so many other cancers. It's the first priority.

Then, for 7 more months, they kill off any residual cancer cells that didn't show up in scans, and they also repeatedly suppress the bone marrow, giving it time to recover in-between rounds. The goal is to re-teach it to make healthy blood cells, rather than just making new cancerous blood cells. It's almost like we're beating it into submission during that time. Sort of a reset process.

After that, we enter a Maintenance phase, which for girls, is 2 years beyond the beginning of phase 3 (not sure why...) and for boys it's 3 (because boys are more likely to relapse, so they get an extra year of treatment). Instead of the roller coaster ups and downs, the goal of the Maintenance phase is to keep the immune system suppressed, without tanking out the counts completely, for the entire period of this phase. They give a steady, low dose of chemo, supplemented by a second type weekly, monthly IV treatments concurrent with 5 day pulses of steroids, and every 3 months, intrathecal (into the spinal fluid) chemo, which prevents relapse in the central nervous system (one of the most common types of relapse).
Doctor say they didn't used to have such a long Maintenance period, but they had much higher relapse rates. I think it's worth the extra time, even though it feels like it'll be forever.

 

 

Thus why he is on this journey for 3 years! I hope it passes in no time for all of us!

 

We Celebrated Halloween! It was great. We were able to go to Make a Wish's Halloween party. they did an amazing job and were very kind to the boys!

 

We had to go to our "regular" doctor to make sure Carson's leg wasn't broke, it wasn't but of course I HAD to make sure. The boys love that they get special attention when we go there! Love Tri-City Medical and Dr. Corry.

Carson has been getting sick, nauseous the past couple weeks. He has had trouble sleeping. The ARAC and T- pill is wearing on him. As long as he has his Zofran he seems to be okay, sometimes we have to have to give him fenegran or benardyl with it. He is so tough. The one thing the child got from me is my determination, when he puts his mind to something he DOES it! 

 

 

We were able to do some baking. Carson and Blake enjoyed it!

 

He is so good with taking his medication. He always likes to help push in the saline, and heparin. He is a great helper. Today I accessed his port for the first time, I was so nervous, and also excited to do it. I did it on my first try, got a blood return just like your supposed to, and was able to give him his chemo with out a hitch! I was very proud of myself, and Brant was also very proud of me. Carson didn't ever say it hurt. he wasn't scared at all. He is so brave.

 

 

Also Happy Birthday to our Blakers! He is 2 today!



Dear...

Dear Carson,

You have now been on this journey of kicking the shit out of Leukemia for 6 months now. It has been a rough road for you. I wish each day that I could take your place and go through all of this for you. I am sorry I have had to hold you down countless times to have you poked, finger pricked, even to get 6 days of shots, or even just to get your blood pressure taken. I am sorry that you feel crappy, and some days just want to lay around and not do much. I am sorry you have lost your hair. I sorry you are so young that you do not understand why this is all happening. THANK YOU for being tuff, and helping me get through all of this. Your smile melts my heart.  Thank you for not complaining all the time. Thank you for being brave even though you know not so fun things happen in that hospital. Thank you for laughing with me on the hard days and letting me hold you when you aren't feeling well.  I am scared for you to start this next phase, I know it will be rough for you; and you will not understand why you don't feel like you should. I pray you will breeze through this and not remember most of it.  I love you to the moon and back, even though it is high. Love, Mom

Dear Blake,

One day I hope you will understand just how amazing you are. There is never a time that I can't count on you to pull a face, make a noise, or just do something that will make me laugh(even though sometimes I have to laugh in my shirt so you don't see). I am so sorry you have had to travel down this awful road with Carson, Daddy, and I. I am sorry that you get left with random people so I can take your brother to the hospital, it breaks my heart. I am sorry you don't understand why your brother is fine one day and the next you can't look at him with out him wanting to hurt you. I am sorry that more of my attention gets directed towards your brother. I am sorry that I can't change all of this. I am thankful you are a goof ball, and can make me laugh. I am thankful you are able to go with the flow, and play by yourself on hard days. I pray that the next few weeks you will understand that while it is not fair, I need to take care of brother, and I may not be able to give you much attention. I also pray that you will not remember most of this. I love you so much. Love, Mom.

  

 Dear Brant,

I am sorry this has been so rough on you. I know in your mind cancer = death. It isn't fair. I am sorry I have no time or patients to talk to you like we used to. I am sorry you get most of my anger. I am sorry that we never have time for just us to go out. I am sorry that our child has cancer, and that I can't fix it like I always have. I am thankful that you don't mind taking the backseat, and know that the kids are everything to me. Thank you for on bad days taking the kids for 5 minutes so I can clear my head. Thank you for doing the crazy things I ask, and just going with it :). I pray that the next 6 weeks we can lean on each other like we have done for the past 10 years. I pray that once we have made it through this, we will know we can make it through anything. I love you so much. love Sara

 

 

 

His hair is gone...

If having a rough few days wasn't hard enough, his hair is now gone.  It was falling out, and we had hair everywhere. We made it 6 months with it, so it was kind of a shock to us that is now gone! But I must say I LOVE his head!

I love my tuff boy! He is so brave and such a trooper. No matter what is thrown at him he goes with it! He amazes me. Last night was rough the pain medication didn't take his pain away like it has in the past, it took 2 doses and his heating/massage mat to get him to fall asleep. We had a special little girl stay the night with us, Gabby is "cancer buddy" and is amazing with him. she does what ever he askes her, and will sit for hours and watch Mickey, gets him water, really anything he askes she does! :)

Rough

Things have been rough this past week. With going to the hospital 3 times a week, it has worn on Carson and I. The medication has caused him to shake as if he is cold, and also have Rosy red cheeks and horrible tummy aches. We had a trip to the ER on Saturday to make sure there was not anything more to it, like infection or such. A short 2 hours later we were able to go home. He has 2 more sets of shots, Wednesday and Friday. We will then enjoy our weekend. Starting next week we start the next part of this phase of treatment. He is still in delayed intensification, with 4 more weeks to go.

Day 146 and counting...

This post is backwards... the pictures uploaded backwards. So we will start with the good!

We were able to go to SCHEELS the new sporting goods store. Carson wasn't sure he wanted to leave the house but enjoyed it once he did. They had these cool "car carts" to ride in.

They also have a Faris wheel, that some how my mom and I got stuck riding once again... we both hate Faris wheels but get suckered in to riding them with Carson and Blake. It was worth it since they both loved it.

While we were at the hospital Carson turned off the lights and laied in the wagon to "sleep" he has a new thing with being upset when people wake him or are noisy when he is trying to rest or as he calls it "sleep"

He loves the Spider man and Superman on the 3rd floor of the hospital. He likes to take the stair to go visit them. On good days we do. 

He has to have a shot in each leg Monday, Wednesday and Friday for 2 weeks. He has 2 down are 4 more to go. After each one we have to wait 1 hour in order to make sure he has no reaction to the medication. He likes to nap during this time. 

He loves to ride his 4-wheeler. I did not think he was old enough to ride it, but he is. He loves it and even on a bad day it brings a smile to his face! 

 

On Monday September 24th, 2012 Carson had antaflacic shock from one of the Chemo medications he had. We had to stay 24 hours in the hospital. He did great. We then had to wait for our insurance to approve the $90,000 alternative medication to come out of Canada. We WON THE LOTTERY. They paid for it! That is why he has to have the shots in his legs 3X a week for 2 weeks. We were very happy they covered it, we wanted to make sure we kicked the crap out of cancer. Carson continues to amaze us, with showing us that no even cancer can keep him down. He rolls with it so well. Though he is sick, and has bad moments, he makes the best out of each day. His leg pain still concerns us, but the doctors are aware and watching it. They do not want to decrease any treatment until he can not take it anymore. I do agree with them, I want to give him as much as we can so he never has to endure this ever again. They said that the "vinc" chemo causes like falling asleep pain in your legs, feet and hands. Carson often complains of his legs hurting, we rub them and use heat to make them feel better. Some days they hurt so much he will not walk and crawls on his knees. It is sad and breaks my heart, but even with leg pain he pushes on. He truly is a Tuff Boy, and we love him so much!