Getting Ready for Christmas...

We were "daring" and made it to the Hancock Christmas party. I am glad we did, Carson LOVED Santa and did not let any other kid get 2 seconds in with Santa with out him standing guard. There was only 5 other kids there.

After that we headed to Grandma Gaylene's, she gave the boys their presents and they loved them. They got Mickey mouse, 4 wheelers, and some play guns. :)

 

We headed home early Carson as beat. He was worn out. Plus we had to get up early to get Carson's blood drawn. He did not want to wake up. But was happy when I told him he could ride in the front seat to the hospital. He sat up like a brave little boy and helped the nurse like always.

 

The past week has been more than rough. I have struggled more than ever. I am not sure if the holiday's or if since things have slowed a bit, that I have more time to think about the "what if's" and it has all caught up with me. I have to remind myself that each day is a blessing. To not take it for granted and to be as happy as I can be. I know 3 years will go by quickly. Christmas time is a time to be joyful, and thankful for everything we have, even the small things like smiles and hugs, an someone to lean on in the most difficult times. I was not happy about Carson having Chemo on Christmas eve. I worry he will be sick, or not feel good, and not enjoy the day as much as I hope he will. Cancer sucks, but having a child with Cancer sucks even more. There is nothing I can do to fix it, nor is there anything I could have done to prevent it, it isn't like I could have, should have, would have, done something different. I wish I could go through all of this myself, but I know I wouldn't be as brave as Carson is. There is no way, I would crumble. There is no way I would want to leave the house or even talk to anyone, but he does, he wants to enjoy each minute even if it is laying in bed, watching Mickey with daddy.

This pas week 4 families have gotten some "bad" news. I am thankful we continue to get + news. My heart breaks for the other families and my prayers are for them. That they can find peace in the journey they are on, and us as well. I am reminded when I get down that many families have it worse, and many families are out of options, we aren't; I am so thankful for that. I hope and pray for peace for the families who are.

 

We have been more than blessed with people helping us this year, it has been rough year for our family. I can't say thank you enough to those who have helped us, especially Low Book Sales, Universal Industrial Supply, and many many family and friends. We could not have gotten through it with out each of you. As we prepare to celebrate Christmas I hope you all know how much each of you mean to us, and that we are so grateful to have each of you in our lives. We wish every one a Merry Christmas!!

A little holiday cheer

We had a rough week, last week. Blake was sick, then Carson was sick. Plus my aunt passed away. So it was one busy week. But this week we are living it up! Enjoying the holiday cheer.

The amazing people at Make a Wish Utah and KBER 101 allowed us to go on the Polar Express. They had us all meet at their station, get on BIG buses and ride up to Heber. Who would have thought that Carson's favorite part of the day... Riding the bus.

 

 These 2 guys rock they are amazing!  They look like they are scared to death, but they are holding on to their toys so no one else could get them! They love the trucks and were super happy to get a present! THANK YOU Kber and Make a wish for a wonderful day!

 

 After we got home from the KBER- Polar Express, we got to go to CCCF. Children's Christmas Cancer Fund. These people are beyond amazing as well. They have it organized and down to a science on how things should go. They allow the kids to pick out presents. Blake wasn't feeling well so Carson picked out a camera for himself, and play-doh for his brother. :) They also gave us a turkey. These people are amazing people and I can't say thank you enough to them!

 Does this look like pee? This is one of his chemos he gets but to me it looks like pee!

And what would a hospital visit be with out the NOSE! He loves to give us the nose it is like his way of saying CANCER sucks! :)


Today at the hospital Caron had to get an ECHO and EKG to make sure his heart was fine! It is. :) We also talked to the doctor about his limbs falling asleep and why it is so painful for him. If his arm or leg falls asleep he cries hard for a good 20+ minutes. They think it could be a side effect from the VINC(a chemo) and they are going to watch it. VINC can cause nerve damage so we will watch and see and maybe start him on a medication that can numb his nerves. I hope the next few days will be easy on him. We are staying up on nausea medication, and drinking plenty of fluids. 

The battle...

Carson loves to help. The more he helps and knows what is going on the better it is for him. We are lucky to have amazing nurses who understand this, and let him do as much as he can, himself. He loves to wear his purple gloves and clean his port. He is now willing to show anyone his port if they ask, and tell you that he can clean it!

 We were able to avoid going to the OR by going to the hospital on Monday, instead of Tuesday. So we started his Inter maintenance 2 on Monday, it is a 50 day process. After that he will get a 2 week break and then we start Maintenance.

 

After getting home from taking Carson to PCMC, Blake got sick. He has a fever of 102.3 and was not holding much down. We went to the ER to make sure if wasn't anything serious. It ended up being just a virus and we were able to come home. The doctors said Carson had already been exposed.

We have been more than blessed on this rough journey, with family and friends showing, love, support, and just being there. I am not very good at expressing how I have felt through this... I guess you could call it survival mode, I deal with what is needed, and the rest can wait. This quote hits home for me on so many levels. So many moms to cancer cutties at PCMC I know feel the same way. You look at the poison they are rushing through the veins of your child, and hope and pray that it will cure them!

"The sacred moment when you watch the poison that you hope/pray will heal you(my son) snakes its way through yards of plastic tubing. The quiet in the room at that moment, despite whatever noise may be present. The helplessness of the person you love most staring at you, close in inches, but miles apart in so many other ways. The awkwardness of needing help and feeling immense gratitude when that help presents itself, but it is paired with equally immense annoyance that you can't find the damn jar of peanut butter."

You find comfort in other moms, on the hard days, and reach out to others when you can.

Tonight was not easy, Carson got sick before bed, thank goodness for Zofran.  I asked him earlier if he wanted to go to the store with me, he said "no I stay home". every time he gets treatment or doesn't feel well he wants to stay home. It is his safe zone. He also wants me instead of his dad. Though I enjoy my time with him, it also breaks my heart. Under his eyes were dark, it was as if I could see the poison running through his veins.

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!

Here goes the next 10 weeks...

The next 10 weeks will be hard for Carson. Hard for our whole family. I pray he will not be in pain, or too sick to still be a little boy.  He has been so brave. The boy is a pro at going for treatment.  He helps the nurses give him his treatments, and is always willing to show them the dinosaur that lives in his mouth(aka when they are checking for mouth sores he grawls at them super cute) The nurses love him and always say that he looks great, and that is such a "BIG BOY" something I have heard from day one. He was never a "baby" he has always been our "big boy" tipping the scales and always being in the 90% on the charts.

Mickey Rode on his lap the whole way to the hospital. He had to share his blanket with Mickey.

 

 

We asked the Child Life Specialist Rachelle(who is amazing by the way) to let Carson play doctor and give Mickey a port. He was so excited to do so, and was happy to give Mickey medicine and also take his blood. :)  

Carson no longer likes to wear shoes, he prefers to wear slippers, Lighting McQueen ones to be exact. He loves them.

I ran to Costco to get a few things, and Carson saw a LIFE SIZE Minni Mouse and about did a head dive out of the cart to get to it. I carried it around the store till I could find more. Thank Goodness they had Mickey. Both boys got one and both of them LOVE them! They are so happy to play with them and each sleep with them. We still have the smaller one to travel with us to the hospital and such, but who wouldn't love a life size Mickey.

Also Uncle Travis and Uncle Shawn got Carson and Blake a 4-wheeler. 

Carson LOVES it.

 

Both boys were very excited for it. I hope he feel good enough to ride it at least a few more times before it gets cold.

 

This is now our motto! We may no understand everything now, but we are smiling through the tears, and pushing through the hard times! I don't ever think I will "make sense" of why children get Cancer, but I do know that there is a lesson to be learned. In my heart I know Carson will beat this.

Put a smile on....

I am forcing a smile in front of my kids. Inside I scream because insurance companies are annoying and have choose what they will and will not cover for his treatment. Really? I am pissed, angry and more hurt than I have ever been. Our child is sick, and you want me to call you and have you explain WHY you are not covering it on top of dealing with him being sick? No this is not how it should be! It is not fair. But what else can I do but put a smile on my face, because if I don't my kids will see I am upset, hurt and angry and they don't need that. They are dealing with enough. Carson going for treatments and being "tuff" about the whole thing. Blake going with the flow since what other choice does he have.

 

Really when you look at this picture, he could barley hold his head up. He was so weak. I am an out spoken person when I can handle dealing with one more thing, I will do whatever is needed to get awareness, and more money for research to find a 100% cure! If we find a cure for one Cancer, we can find it for all of them; I am starting with Childhood Cancer.  No kid should have to be "sick" and no parent should have to face the fears that Brant and I are.

At least he is able to be a little normal. He enjoys riding his bike but always has to have Mickey mouse with him. He gives Mickey Mouse bandages, and always says Mickey's legs hurt when his do. He loves Mickey. I am thankful something makes him as happy as Mickey does. You would never guess this kid is sick. Our next phase of treatment will be more intense and not something I am looking forward to. I am also thankful he doesn't fully get he is "sick" and all the fears that could Intel.

10 more days for this "part" of treatment

We are in a part of treatment called Inter-maintenance 1. In just 10 short days we will finish this part of his treatment and enter a phase called Delayed intensification. Not a part of treatment we are looking forward to. We have been so blessed to be able to be somewhat normal and do things that kids should get to do. Not all kids with Cancer are able to do so.

 

I wanted to get a picture of him with his Port Accessed. To show him later what it looked like. This is his "I am going to kick Cancer's butt" face!

 Here are some pictures we took up the canyon; Monday after treatment. He enjoyed going for a ride in Daddy's truck and watching the river.

 

Before we were able to go up the Canyon Carson and I made the journey to PCMC. We had to take Mickey Mouse along with us. He is driving me nuts with Mickey Mouse. He watches it at least a few times a day if not all day(on bad days). It makes him happy so I deal.

We were scheduled to go through the OR so we had to be checked in with the OR at 8am. Carson knows when we go there he can play with the cars. While we waited Carson found a friend who had down syndrome and a trachea tube. While his mom was suctioning out his tube Carson reached his hand out and told him "it okay". The little boy smiled at him, and they held hands and play together. It was the sweetest thing I have ever seen. We had to leave soon after and head up to get "treatment". They then changed our plan and had us go through the RTU; much easier for Carson to go to the RTU since I am able to take him to the room and hold him while he falls asleep. I am also able to go back to him much quicker than if we were in the OR. But since we we were moved to the RTU it meant we had go back up stairs for treatment; Carson was no happy about this at all. But soon calmed down and fell asleep while he got his chemo. I also talked to the doctors about using essential oils to help Carson with his leg pains. After talking to a few doctors, we came to the agreement that we will not use essential oils to help. Some studies say that it could make the chemo not as effective, and that is not a gamble we are willing to take. So we increased his doses of pain medications, and will continue to use a vibrating chair mat and heating pad to help manage his pain. We are 2 days out of treatment, so far he has not been in too much pain. He acts silly after getting a "full" dose of pain medication, but I would much rather have a silly child than a child in pain.

 

We continue to receive so much support from family and friends. We are more than thankful for all the support.