Wrapping up 2012!

   Treatment on Christmas eve, meant that we had to go for a blood draw on Sunday. The nurses at American Fork hospital love this kid, and came in to do his blood draw on a SUNDAY. He is the only pediatric patient they have; and he ham's it up for them!

 We found this GREEN Santa hat and Carson had to have it! He wore it for 2 weeks. Made him happy.

 He dressed himself to go to the hospital, his brothers shirt, star wars jammies, and Gabbi's pink monster slippers. If is makes him happy, then I am happy. Some battles are not worth fighting! 

Christmas eve night I ended up in the ER with a slipped rib talk about pain.

Then we got to Christmas morning! Blake enjoyed it so much, he loved opening presents and was super excited to get each one. 

Carson didn't feel well, and it was a rough day for him and I. But we were blessed to stay home and all be together, when I know so many families who were celebrating in the hospital.

 They got a play kitchen that they both LOVE! Brant thinks it is a dumb for boys but they like it and play with it often!

 Carson HAD to wear shorts like daddy's, and Santa brought him 4 more so he could be just like daddy and have pockets and all!

He loved all the trucks he got for Christmas. It was a good Christmas just not great.

A few days after he felt better so we went shopping to use some of the gift cards we got. In JC Penny he put on girls bracelets and glasses and pulled faces! I thought it was cute and he thought it was silly. I was happy he was feeling better since it has been a rough few days.

 

Then cam the NEW YEAR! Carson partied at Grandma and Grandpa's while Blake, mom and dad went home to bed. I still did not feel well from my rib. Carson enjoyed staying at grandma and grandpa's.

Another blood draw on 1/2/13! First one of the new year! We were excited as you can see!

This was his outfit to go to the hospital on 1/3/13 :) much better than before! 

His dad has been off work for 2 weeks now, and he loved that daddy got to go with us. He liked to play trucks with daddy. Brant said " your on a first name basis with all the nurses?" I replied "yes I have been here every week for the past 8 months, I know them well!"

 

 

The chemo made his mouth taste funny and he was not liking it.



 

Laying on the floor watching the Ipad.

 

The chemos he got in this phase are...

 Methotrexate is an anti-metabolite medication, meaning that it interferes with the normal cellular metabolism causing cell death. This makes it an ideal chemotherapy agent, and it is used to treat many types of cancers, including but not limited to breast, head, neck, lymph, blood, lung and bone. Because methotrexate is administered systemically, meaning to the whole body, it can also interfere with normal healthy cells functions, leading to unwanted side effects.
      Vincristine is used to treat: acute leukemia, Hodgkin's and non- Hodgkin's lymphoma, neuroblastoma, rhabdomyosarcoma, Ewing's sarcoma, Wilms' tumor, multiple myeloma, chronic leukemias, thyroid cancer, brain tumors.

We have one more treatment on Jan 14 and then we have a 2 week break and then..... drum roll please..... WE HIT maintenance. maintenance will be what we do for the next 2.5 years, a routine will develop and we can start to live like a normal family to a point. We will still go to the doctors every 4 weeks. He will take Chemo pills each night, and have some Chemo put in his Port each month. But nothing will change, we will have the same thing for 2.5 years.

We did get different nausea medications for this time, since he was pretty sick for a few days last time. we are hoping they will help. This past year was filled with so many new challenges that I never thought I would face. But we got through them, a little stronger, and wiser I think.
   There is no way we could have got through it with out the help of so many family and friends. My mom and dad have helped so much. My dad lost his job in July and was able to tend Blake for me, and help me on bad days, it was a safety net I loved having. I was scared when he went back to work. My mom comes over whenever is needed, no questions asked and does what is asked, she isn't good at just offering so I have to "be bossy" and tell her what I need, but she raised me to be that way :).
My mother in law has been great at driving an hour down whenever she is asked, staying the night, cleaning and just helping out with whatever. My little brothers have been there as well, they are not as good at taken care of us as I am of them, but they are there, to bring new toys to the boys, Pepsi to me when I need it, and to play b-ball with Brant. Really I don't think we could have made it with out these 5 people plus the countless others who have helped us. It has been rough. I wish I could name each of you, but I know I would forget half of you. THANK YOU. This next year I am hoping it will be much less stressful, and eventful.

Goodbye 2012! A year that I will never forget. A year full of struggles, heart ache, fear and unknown. But filled with lots of love, and support! 2013 I hope you are good to us and much less eventful! Here is to wishing everyone a very blessed new year, filled with love, understanding and laughter!!!

This quote rings so true at this time in my life... I have learned so much about who people really are over the past 8 months...

"There comes a time in your life when you walk away from all the drama and people who create it. You surround yourself with people who make you laugh. Forget the bad and focus on the good. Love the people who treat you right, pray for the ones who don't. Life is too short to be anything but happy. Falling down is a part of life, getting back is living." - Unknown
 

 

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!