Thoughts

I have been re-reading a lot of what I went through this last year +, and found a few posts I never posted.  Here is one from the beginning of August last year when I was weeks away from having Ellery and Chan still had his last inpatient to go.  I am not sure why I never posted it- I have a hard time feeling like what I have to say is important, or that anyone even wants to hear it, or that it is too personal.   But I am going to post it now because I feel like I need to document all of what I felt and experienced good and bad....

"A few weeks ago I was in a pretty bad place.  I was frustrated, upset, annoyed, grumpy, unhappy, angry, etc.  Basically I had a little bout of depression.  I was not a good person to be around.  I was inpatient and grumpy with my kids and my husband and I really had no motivation to do anything.  There were many things contributing to how I felt. 

When Kindt and I decided to try to have another baby I knew that I wanted this labor to go differently then the rest.  I didn't want an epidural I wanted to have this baby without one. Then at 4 months pregnant when I was just starting to look into classes to help me Channing was diagnosed with cancer.  This diagnosis consumed us.  Then by the time I realized I was 7 months pregnant all the classes were either over, or too far away to participate in.  I was bitter that I wasn't going to have the delivery that I had hoped for.  I also was upset because I didn't know if my husband would be there for the delivery either.  He has been out of town this week, while I was 38-39 weeks pregnant.  And likely Channing will be in the hospital when I go into labor.  I was getting myself more and more depressed about this coming baby.  Don't get me wrong, I am excited to hold this sweet boy in my arms, but was just feeling defeated that what I wanted for my delivery was completely taken away from me.  I was also grumpy about all the aches and pains I was having with this pregnancy that I have never had before.  Why did I have to have all these aches on top of everything else in my life. 

I felt that I had a constant visual reminder of my son and his cancer.  Every time I looked at both my boys I could see the differences and it would break my heart.  Every time Channing would need to slow down or say "I get tired a lot" my heart would break.  He just couldn't keep up with his brother, and he was noticing it.  People would innocently say "now you can tell them apart" or "look at how different they are" or "oh they must be fraternal" my heart would break.  They weren't different before cancer.  They looked very similar and people would stop and say "identical twins, huh?".  Now, I realize these comments where/are completely innocent and I would just smile, nod, and walk away but they hurt.  (If you ever said anything like this, it is ok, I do not hold it against anyone - I promise!!.  We all say things not realizing how they could have affected someone).  I was digging myself deeper into a hole with all this negative thinking.

My house was a disaster.  I didn't have the motivation or energy to clean.  I was also afraid that if I did anything I would put myself into labor and that would make our lives so much harder, so I basically put myself on bed rest.  I didn't want to go anywhere or see anyone because I would have to put on a happy face and pretend that I was ok.  I also would get so worn out after being around people, it was exhausting. 

I was grumpy that my daughter was diagnosed with a milk allergy on top of everything else.  To some it may not seem like a big deal, but to me this was just another thing to add to the list of things that we had to deal with.  For anyone who knows me, I am not a cook.  I can cook a few things and tried to have dinner on the table when my husband came home at night before cancer.  With Ema's milk allergy I have had a difficult time coming up with ideas on what to make because butter, milk, cream of chicken, sour cream, yogurt, etc were all taken out of the equation.  So, I stopped cooking. My amazing husband stepped up and would come home from a long day at work and whip up something for dinner.  I felt I wasn't able to do my 'job' which was taking care of the house and kids and making dinner. 

I felt like no one could understand what I was going through... a son with cancer, being 8 months pregnant, a daughter with a milk, peanut, and egg allergy and eczema.  I felt that all my life was was going to the doctor for one thing or another.

After a little over a week of this defeating attitude I knew that something needed to be done.  I didn't like who I was, and how I was acting.  I had a nice talk with a friend one night putting out all my fears, thoughts, and frustrations.  It helped a bit but I was still not a happy person.    A few days later I went back to this friends house and we talked for hours.  We talked about everything. Instead of just talking about everything we felt and why our lives were so hard we talked about what we could do to make it better.  I felt that I had lost all control so I needed to let go of some things (when this baby was going to be born) and then take control of things that I could (my attitude, and what I did to make myself happy).  We knew it wouldn't just magically get better on its own, so we decided that we needed to be proactive and make changes in ourselves if we wanted to be happier.  We knew we needed to find joy in the now no matter how hard or we would never be happy.  Here are some of the things that I did to pull myself out of myself...

I had to trust in God's plan and in His will.  This whole time I had been telling God what I wanted and how it should be.  I wasn't willing/able to put my faith in His all-knowing plan and really be willing to accept His will.  I know how blessed we have been, I know that God has been with us each step of the way.  I know that His timing is perfect, I just needed to be willing to let go of my timing and trust in Gods.  Channing was diagnosed with cancer when I was 4 months pregnant.  I was past at the point in my pregnancy where I was feeling sick, and the baby had already formed its most vital organs so while I still had to be careful with all the drugs and Chemo's it wasn't as scary for the baby.  I am due after Channing's last inpatient and most invasive treatments.  If that isn't a clear example of God's perfect timing I don't know what is. 

Loose myself in the service of others.  I decided that I needed to stop the pity me attitude and do what I could to serve others.  I knew that there were limited options for what I could do but I thought about the things that I was capable of.  I put a box together of fun hands on learning toys that my kids never touch that would really benefit my friend who has helped me so much.  I was so excited when I would find something to add to the box, and felt good knowing I was helping someone else.  I also wrote a few notes to some old friends who didn't realize how much of an effect that had in my life.  I felt I had done some good, and felt better about myself. 

Time alone.  Not just alone time, but time away from the house.  I decided to do something for myself and I went out and went baby boy take-home-outfit shopping.  It was a lot of fun for me to be out by myself just enjoying looking for something to take this baby home from the hospital in.  It was a refreshing change of the normal for me and really helped me feel much better.  I also got all baby boys stuff organized and washed so that I can be looking forward to him coming. 

A clean house makes a happy mother.  While I don't enjoy cleaning, I knew that if I woke up to a clean house I would be a much happier person.  It would make my life a lot easier if I actually had clean cups and bowls to feed my kids breakfast so they didn't throw a fit.  I have made a conscious effort to have the house tidy every single night, even if I am tired and don't want to do it.  I know that it makes my morning so much better and easier.

I have also tried to find the positive in every situation at home. I realized that my negative attitude was causing the whole house to have a bad attitude.  I have been complimenting my children more, and praising them for the good things they do.  I have also had my kids start helping me more around the house.  They are capable of cleaning up their toys with a little direction so we work together to get the job done.  I have also complimented my husband more.  He looks at me a little skeptically sometimes when I thank him for doing something, ha ha, I think because he thinks I'm buttering him up to ask him to do something.  But really I am just grateful at how much he does, and how amazing he is with the kids and that I want him to know how much I truly appreciate him.

It has been almost 2 weeks since I made these changes.  I am a much happier person.  I still get knocked down, but I can pick myself back up now.  I am choosing to focus on the good things I have in my life instead of all the things that aren't going my way.  Not sure the whole purpose of this post, except maybe we all have hard things in our lives.  We all have times where we get knocked down and stuck in a funk.  We all look up and say "God, are you sure?? Really??".  It's what we do with what we have that makes all the difference.  It's how we choose to react and change ourselves to make us happy that matters."

One year

One year down, one and a half to go!!!  Chan's end date for treatment is Sept 9, 2013. 

For Chan's one year anniversary from diagnosis we did 10 random acts of kindness.  The kids never asked why we were doing what we were doing, and I only said we were going to make people smile today just because we can.

#1 - #6

The boys made some cards using stamps and crayons and stickers.  They stamped "thank you" on them then I added a little note for each person we gave it to.  We also put a bag of M&M's with each note.

1.  Story time Teacher

2.  Mailman

3.  Morning Bus Driver

4.  Afternoon Bus Driver

5.  Teacher

6.  Teachers Aide

#7

We bought donuts (I gave the boys the choice between donuts and muffins and they wanted donuts) for the local police department, and delivered them. 

The police man that was there allowed the boys to climb into his car and turn the lights on and off.  It was very nice of him and made the boys day :) 

#8

Bought a $5 gift card and gave it back to the cashier to use on the next person's purchase.  I tried to pay for the groceries of sweet older lady in line with us, but she wouldn't let us. 

#9

Made dinner for a friend who was sick, had sick kids, and an 8 week old baby.

#10

Got a swing for a friend who has a month old baby girl so that she could get a break from holding the baby all the time :)

I also called a few people that day and let them know how much their message, thoughts and prayers meant to me when Chan was diagnosed.  My only regret is that I wasn't able to call everyone and express just how much I needed and appreciated everyone's support over the last year. 

This was one of the best most peaceful days.  I enjoyed spreading joy and seeing others smile.  I want to make this a tradition whether it be for birthday's or just randomly deciding that I need a little more cheer in my life. 

Random Acts of Kindness

In one week, it will be one year since Channing was diagnosed with Leukemia. It still seems surreal. I have been thinking about this day (March 9th) a lot and have been trying to think of something that I could do to honor everyone who has helped us this last year. I read on a friends blog about the Birthday Project, doing random acts of kindness on your birthday, or other important dates. I think this will be a fun thing to do for the one year anniversary of Channing's diagnosis. Not sure how many I will be able to do with 4 littles (I am going to aim for 10), but I am going to do my best and that’s what matters J  I would love it if any of you also wanted to do this (just one random act of kindness) and then let me know what you did, and maybe even share a picture with me.

This last year has been a difficult one, and I have tried to make a hard situation a positive experience and I hope that I can do this 'Birthday Project' every year on the anniversary of Channing's diagnosis to help build happy memories for our family even in the most difficult times. 

I still remember the sweet young lady who gave me extra snickers on my snickers ice cream the day after Channing was diagnosed.  She had no idea what I was going through but that small act of kindness put a smile on my face which was a huge thing for a mother who just found out her son had cancer.  I am excited to pass happiness on with some random acts of kindness.  Who knows, maybe I will go back to the fast food resturant and see if I can get in touch with the stranger who made such a difference to me. 

For more on the Birthday Project go here.

Thoughts

I've been thinking a lot about the last 8 months of our lives.  About how much we have been through.  I have been really emotional lately thinking about it all.  I cry if there is any reference to cancer in movies, shows, songs, and even at church.  The last 3 months I have kind of been 'pretending' that we have moved past cancer.  We haven't, I'm not sure we ever will, it will always be a part of who I am now.  I wish I could just say my son was perfectly fine, but the truth is we have constant reminders of just how sick he is/was.  Channing still gets up some mornings and hangs over the toilet, saying he is going to throw-up. Anytime one of the kids are sick and I tell them I am going to call the Doctor, Ema says "Yeah, because I need to get my port out".  It is cute but I always wear a sad smile when I hear it - it is a reminder just how much our lives have been affected. 

Kindt and I were watching the TV show 'House' the other night and it was about a possible small pox outbreak.  The CDC came in and shut down the hospital, no one in or out.  In one of the hospital rooms a little girl was waiting for her mom to return with her favorite stuffed animal so that she wasn't so scared for her cancer treatment.  I couldn't keep my emotions in when the doctor told her that her mommy and stuffed animal couldn't come in but that she needed to be brave and do her treatment without them.  I was heartbroken.  It brought me back to those days in the hospital and how hard it was to not be the one with my son, and how hard I imagine it would be if I couldn't be there when Channing needed me.  It hurt.

I recently found out about another little boy who was diagnosed with cancer.  It broke my heart.  I once again re-lived the feelings from when Channing was diagnosed.  No child, no parents, no family, no one should EVER have to feel that way.  I want to fix all of these children, make them better, make them not suffer.  I want to hold their parents and cry with them.  I hope and pray that this little boy gets better quickly and that his parents are comforted as much as possible during this time.  I feel a little guilty when I hear how much worse things are for other kids with cancer.  I feel like we had a 'fairly easy' ride comparatively - I feel I have no room to complain because so many other kids are fighting so hard and are getting knocked back down so many more times then Channing ever was.  I wish there was more I could do to help others who have to travel this hard, and terrifying road... I pray that cancer research gets the funds that it needs to be able to limit suffering and find a cure for this terrible disease.

I am not sure exactly why I have been so emotional lately.  Maybe its because Channing had to go back in for a spinal chemo for the first time in 3 months.  And it hit me hard.  I could no longer 'pretend' that Channing was perfectly fine.  Any time they run his blood I wonder if maybe this will be the time we find out the cancer is back.   Anytime Jakob gets sick I wonder if there is the possiblity he too now has Leukemia.  I don't think those creeping fears will ever completely go away...

Maybe its the season.  The fact that we have a whole holiday dedicated to remembering and being grateful for blessings.  I thank God every day for my 4 precious children.  For each of their unique personalities.  It hurts when people make comments about 'having my hands full' or 'double trouble'.  There was a time when I didn't know if my son was going to make it through this fight.  I love having my hands full, and having double the fun, and yes sometimes its a zoo, but I wouldn't change it - not for one second.  I am grateful that my 'cancer kid' is healthy enough to be able to run and play and make my home a zoo.  I am grateful for the crazy, silly, fun, and precious moments I have everyday with each of my gifts from God. 

Maybe its the Christmas season and remembering the birth of our Savior Jesus Christ and all He has done for each and every one of us.  I love the Christmas season for so many reasons.  For the time spent with family, for the reason for the season, for the love and compassion so many people show at this time of year.  My wish is that we can show that love year round, that we may not judge others and that we give of ourselves the whole year long.  And most of all that we remember to thank our Father in Heaven for all that we have.

Sedation and Thanksgiving

The day before Thanksgiving was Chan's first sedation since his last inpatient 3 months ago.  We woke up that morning and I reminded Channing that he wasn't allowed to eat anything or drink anything except water.  He sat on the couch while his brother and sister and I ate breakfast (I HATE eating in front of him, but there really isn't much of a choice).  When I went into the living room Channing was laying on the floor under his blanket.  I asked him if he was ok, and he just shrugged his shoulders.  I could tell something was bothering him but wasn't sure what.  I talked with him a bit about what they were going to do at the appointment and got everyone into the car. 

After dropping Ema and Jakob off at a friends house I moved Chan into the middle and asked him what was bothering him.  He said he was just tired, but I was worried he was getting sick, or that it was anxiety or a combination.  I asked him if he had owies, and he said no.  I asked him if he was worried about going to the hospital and he said he didn't want to go.  I told him it was going to be ok and that I would hold his hand and he would be just fine. 

It was heartbreaking for me to see my baby have such anxiety.  It makes sense because now that Chan is in Maintenance we go only monthly and its been so long since his last back pokes.  He has been so strong through all of this and I think having to go get back pokes after so long was a reminder that my baby is still very sick and still fighting to keep this terrible disease away.  It was a long quite contemplative drive together to the hospital. 

I have never watched them give Chan back pokes.  I tried to stay the first time when they were doing the biopsy but there were so many people in the room and so many monitors beeping randomly that it was just too much for me.  I also wanted to stay when I was 36 weeks pregnant to watch but the oncologist wouldn't let me because she was afraid it would put me into labor :) 

Chan is given propofol and fentanyl right before the procedure.  The propofol is a short-acting general anesthetic.  The fentanyl is pain reliever and I just read (I am floored!) that it is 100 times more potent then morphine!  I had no idea.  No wonder he never is in any pain afterwards!!  It is calculated based on his weight and given through his port tubes.  This time around right when Chan was given the propofol he sat up and tried to crawl off the table.  Chan was completely out of it and it took all three people in the room to get him to lay back down, and the second he was down he was knocked out. 

I left during the procedure with my infant in tow and headed to the little cafe outside the sedation clinic to get something to eat.  The procedure itself lasts about 5 minutes.  I came back shortly and Chan was asleep.  He typically sleeps for at least an hour before we can even get him to respond to our attempts to wake him.  It's actually a little entertaining for me to lift his hand and have it plop on the table without so much of a flinch from Chan :)  Its also a time that nurse Judy and I talk.  I am pretty sure she knows just about everything there is to know about our family, and she is so sweet and remembers a lot.  Nurse Judy was the nurse that was in the room for diagnosis as well so she has been with us on this journey from the start. 

When Chan woke up one of the first things he said was "Mom, did you hold my hand?".  He remembered I told him that I would hold his hand, and I felt terrible that I forgot!  I said I am holding your hand now, and he was fine with that.  He then wanted his favorite pizza, gatorade, and yogurt.  It was too late to order the food (I felt sooo bad I had forgotten), but nurse Judy (shes amazing!) was able to find some yogurt for Chan to have and he ate two entire bowls full of yogurt!  Then I told him we would buy him his favorite pizza for dinner.  I am pretty sure I would have done/given him anything he asked for at this point. 

This last week Chan has been nauseous on and off and we have had to give his anti-nausea medicine fairly often.  He has also been a lot more tired, and gets more easily upset.  I think that those side-effects are wearing off now.  It really is so hard to see him have to go through all of this, especially since its been so long and feels like a life-time ago that we had all of the hospital stays.  Its a harsh reminder that cancer is still apart of our lives and will be forever. 

Chan's next appointment is 2 days before Christmas.  He will be getting chemo through his port and he will be starting steroids.  It will be an interesting Christmas break for us making lots of burritos and dealing with 'roid rage'.  At least Kindt will be home, and I will not be dealing with it during the day alone. 

I am thankful that for Thanksgiving I had all of my children together laughing, screaming, eating, fighting and playing, and I wouldn't have it any other way!

I hope that everyone had an enjoyable Thanksgiving and were able to reflect on all of the many blessings given by our loving Heavenly Father!

Buzz Lightyear

Buzz Lightyear has been a character that Channing has liked for awhile. Since this has been a very hard year on Channing we decided that for Halloween we were going to all be Toy Story characters.  Channing got to be Buzz, Jakob was Woody, Ema was Jesse, Ellery was the pizza planet alien, and Kindt and I were Mr. and Mrs. Potato Head.  We also got some extended family into the mix and had Squeaker the Penguin, and two different Prospectors :)  It was a lot of fun to dress up as a family.

Meet the 'Round Up Gang' and friends :)



The last month

We have been very busy this last month with this:

 and this:

Channing had two treatments at the beginning of September.  He was on steroids for the first week of school, but I think the second week was the worst when he was detoxing from the steroids.  He was ON ONE the week after he was finished with steroids.  Very cranky, very tired, waking up in the night, etc.  We got through it though and now he is back to his normal crazy self. 

We also went to Madison last week on Thurs for labs and a port flush.  Since he has so much time between treatments they have to make sure his port doesn't get 'clogged' so they flush it.  The appointment lasts like 20 minutes then we are done.  We will go up at the end of October for another port flush and if I'm feeling up to it with all 4 kids, then we might do something fun in Madison.  Since the drive takes about 6 times as long as the appointment. 

The kids are LOVING their baby brother, and are really really good with him.  We had a lot of help the first month after the baby was born, and that was really helpful :) 

Life is going really well, and Channing is doing fantastic!!  Only 2 more years of monthly visits to Madison!!