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!