Water Tower Run and Taste of Clinton

First, I want to thank everyone who came out to support us, and who walked or ran the race.  Also, I want to thank everyone who did so much to make the event happen and such a success.  Our family really appreciates everything that everyone has done for us. 

Let the race begin!!

Kindt and Chan waiting for the race to start.

Ready, Set, Go!!

Off and running.

I didn't actually participate (I know, but my plan is that I will at least walk, and maybe run next year), and sadly this picture is the only picture that was taken of me...but proof I was actually there :)

 Channing, Kindt, Jakob and the kids grandfather all walked the race.  The boys mostly rode on the shoulders of Kindt and Dennis but they still participated.  Channing was so cute as he ran to the finish line :)

I wish I had a video and you could see the HUGE smile on Chans face as we cheered for him as he crossed the finish line.  Sadly, our camera battery died right before Chan actually made it to the finish line.  Which also means I didn't get a picture of Jakob and Dennis crossing the finish line, but they did, and if you look really closely in the background of the picture above you can kind of see them.  It would have seemed that Chan was a completely normal almost 4 yr old until he threw up in the bushes after the race. He was fine, but we get those reminders that he does have cancer and that he isn't quite able to do all the things normal almost 4 yr old can.  But some day he will and he really is doing great :)

I took a few pictures (after getting the other camera) of the huge group of people who came out and supported us, these pictures don't even do justice to all the people that came.

THANK YOU EVERYONE!!

Come October I am going to start training, or at least walking or running, or maybe joining the gym so that I can participate fully next year.  Hopefully many of you can join our family in supporting whoever is the benefit for next year :)

Since we had been telling the boys that we were going to the Water Tower Run, and their shirts had a picture of the Water Tower, the boys were really excited to see the Water Tower.  So after the race we went up to the old water tower. 

 Ema, Chan, and Jakob

Chan and the water tower :)

I just thought this was a cute picture of Channing :)  Almost like saying 'Victory'!! 

The boys thought it was pretty cool and Kindt told me that he used to play at the water tower when he was a kid so we are just passing on the tradition :)

After the race there was a whole day of things to do in Clinton - it is called 'Taste of Clinton'.  They had garage sales, the MDA tub run (over 1,500 motorcycles came into our little town!), vendors, a car/truck/tractor/motorcycle showing, performances, clowns, face painting and more.  It was a lot of fun. 

We sat outside to watch for some motorcycles to drive by and I had a fun time taking pictures of my kiddos while they watched for motorcycles. 

Handsome Channing :)

Channing, Ema, Jakob. 

The kids would get really excited anytime a motorcycle drove by :)

After nap time, we headed downtown to see that 'Taste of Clinton'.  A local bar had Packers legend Jerry Kramer come sign autographs and the proceeds are going to Channing.  We stopped in to say thank you and to meet Jerry Kramer.  He is a really nice man, and he surprised us all when he let the boys try on his Superbowl ring!! 

It fit loosely over two of their fingers!! 

The boys didn't fully understand what a neat experience it was, but I sure did and I was smiling for days over it!  I am sure when the boys get older they will realize what a truly special experience this was!   

Packers legend Jerry Kramer, and us :) 

After meeting Jerry Kramer we walked downtown to see all the vendors, cars, and other things that were there. 

I told the boys to pick their favorite car and they choose these two...

It made me laugh when I realized that the choose cars that matched their shirts :)

We watched the clowns make balloon animals for awhile, and watched a few of the performances before we decided to call it a night.  It was such a good day and I will always look back on this day with fond memories. 

3rd Inpatient, June 9th -12th - Half way done!!

Chans last hospital stay was pretty uneventful - which is always a good thing!   Jakob and Aunt Brittany came up to drop us off and ended up staying until a little after 5.  It was so nice to have someone else there to break up the mundane-ness of the hospital and also so that I could leave for a bit and go to the bathroom or get food without feeling like I was ditching Channing and had to book it back.  I think it was good for Jakob too, and he was really good for Britt and I.  The boys had a lot of fun playing and watching cartoons.  It was funny to see the reactions of the doctors and nurses when they weren't quite sure who was who, though after a quick inspection its easy to tell that the really pale, thinned haired child is the cancer patient :)

I had a stuffy nose and was feeling pretty exhausted after the first day so I decided to head home and let Kindt finish up the weekend when he arrived on Friday evening.  Channing also got a surprise visit from Nana (Chans grandmother, Marianne) who was on her way home from a meeting and had to pass through Madison.  Nana and Channing painted pictures in the playroom while Kindt and I went to dinner.  Kindt and I really don't get out much just the two of us and it was nice to have that time together.  Marianne took me home and kept the other kids overnight so I could get a break.  I slept until noon the next day!  I can't remember the last time I was able to do that.  Then Britt took Jakob to go visit Chan for the afternoon on Saturday and the boys had a good time together painting more pictures (anyone want a painting I have a lot ;).  I got to have some time with just Ema which was a lot of fun for me, though she was a little cranky.

Kindt and Channing came home on Sunday and the kids were happy to play together and fight again :)  When Channing gets home from the hospital its always an adjustment for all of us.  Channing is used to having all the attention and getting to do what he wants (mostly) and the other kids are overly something over mommy and daddy being back home and having a different schedule then normal.  It usually takes a few days for us to get back to normal, though for some reason this time it has taken longer and I still feel like we are out of whack.  It might be that I am 7 months pregnant and don't sleep well so am constantly exhausted, but whatever it is we get through it.

We don't have any pictures from our last stay, but I will leave you with a cute picture of my babies enjoying having everyone back together :)


Aren't they cute??    :)

Local Blood Draws

Since the AFCH is almost an hour and a half away Chans doctors and nurses allow us to do local blood draws if that's all that needs to be done.  Last week Thursday the 2nd we were able to do the local blood draw instead of take the drive all the way to Madison.  I was excited that we didn't have to go all the way to Madison and had Aunt Brittany stay home with the other 2 kids while Chan and I headed the 10 minutes to the local clinic.  I was hoping it would be a fairly quick and painless process. 

From the second we got into the car I knew it wasn't going to be very easy.  Channing was already starting to have anxiety, and was getting frustrated that we were doing the blood draw at his pediatrician inside of at his 'hositbul'.  I explained that it was easier to do here and that they would just poke his arm and get some blood out.  He was still upset, but knew he didn't have a choice. 

I had put cream on Chans arm but had only put it on 30 minutes before and it usually takes an hour to work best.  I figured it was more of the idea of it then anything else - arm pokes really don't hurt that bad.  *Funny story - Aunt Brittany gave Channing some cookies to take with him as a treat for going to get his blood draw.  As we were driving Channing asked what was in the middle of his cookies.  I told him it was cream.  He said "EWWW thats gross!".  It took me a minute to make the connection when I realized that he thought it was his numbing cream inside the cookies.  I started to laugh and explained that the cookies had frosting cream not numbing cream.  He still refused to eat them :)

We went into the clinic and headed back to the lab.  Unfortunately, They had to dig in his left arm for about 45 seconds and couldn't get anything out.  Then they had to try the other arm.  Channing was a wreck - well as much of a wreck that he gets about these things.  He had tears going down his face and said I don't want to.  He still held very still and let them poke him but it broke my heart.  They finally got some blood out and Chan calmed down and watched them suck the blood out. 

We got into the car and I was exhausted emotionally and physically, I can't even imagine how Channing was feeling.  I asked Channing if there was something he wanted to do as a reward and he said no.  I gave him some ideas but he really didn't want to do anything.  I was hungry (as I always am :)  so I went and got some food.  Channing then decided he wanted to go say hi to daddy at work.  So we surprised daddy and talked with daddy for a few minutes and then sent him back to work.  Then Channing decided he wanted an ice cream cone, so we went and got him and ice cream cone.  We came home and I felt a little bit better but knew that I couldn't do that again. 

On Monday we had to go back in and do another CBC.  This time I brought Kindt with me so that I didn't have to sit with Chan while he was being poked.  I put the cream on a good hour before the blood draw and prepped myself for the worst.  Kindt took Channing and Jakob back and I sat in the waiting room with Ema.  It was taking awhile so I went back with Ema and they had already unsuccessfully poked one arm.  The nurse went and found another nurse and they tried the second arm.  Thankfully they got blood on the first try.  Channing didn't move and didn't cry.  I could tell he still had some anxiety but it went so much better this time. 

Unfortunately the stress of it all or something caused Channing to snap when we got to the car.  We then proceeded to have a 2 hour fit from Channing.  I won't go into the details but any of you who have ever seen a Channing fit know what I am talking about.  He gets it into his head that he wants us to say a certain thing or do something a certain way and if we don't he freaks out, and he expects us to read his mind and know exactly what he wants.  It was so hard for me because I knew that he wasn't just being a goober but that he really had a not fun experience and his emotions were coming out in the form of a fit.  We are working on how to have compassion with Channing (and all the kids) while still maintaining discipline and structure.  We just have to do what we have to do to get through the moment or they day.  Some days I have more compassion and some days I have zero patience.  I think that is how it goes for most families though :) 

I think I have a better idea of how to make it less traumatic for both Channing and I.  Hopefully the blood draw we have to do tomorrow in town will be a much better experience for all of us!

Thank you!

I wanted to share a story with all of you. Two Sundays ago I was pretty grumpy, just overwhelmed by everything.  I walked into church and sat down, already feeling exhausted.  A sweet women called me over and handed me a handmade bear for Channing.  I was overwhelmed with appreciation and love for this women who took her time and talents to bless our lives.  Each stitch was made with love.  Channing held and loved his bear all week long, and the kids called the bear Channing's hospital bear.  This last Sunday we sat down at church and we were handed another blue bear and an adorable pink bear.  This women not only made one bear, but three.  One for each of my sweet children.  My kids LOVE their bears.  They carry them around the house like treasures, and Ema will not sleep without hers.

Every time I see these bears I think of this sweet women, and I think of all of you who have done something for my family.   I am touched by how much support and love we have received in the last 3 months since Channing was diagnosed.  People have sent and given us cards, money, gas cards, toys, hugs, dinner, a clean house, taken my kids for a day or days at a time and so much more.  I can never thank all of you enough for all your prayers.  I know that is why we are still hanging in here and why Channing is still doing so well.  This has been one of the hardest 3 months of my life and will continue to be hard for us, but knowing I am not alone has lifted my burdens and has helped keep me positive.  I wish I could thank every single one of you personally, and I apologize for not keeping up on thank you notes, but time and energy has been elsewhere.  I want you to know that each act of service and kindness has been hugely appreciated.   Thank you for each thing you have done, it may seem small to you, but each hug, smile, letter has a huge impact on my attitude and appreciation for all of you.  I find that right when I am getting discouraged there is something or someone there to cheer me up, I know that God is using you as his messengers.

THANK YOU!

Side Effects

When Channing was first diagnosed I was afraid of what side effects my poor boy would have to endure.  Amazingly, so far his side effects have been minimal.  The first couple weeks Channing was completely withdrawn.  He liked to lay in a dark room with the lights out and stare at the walls.  He would do this for hours.  Thankfully, he snapped out of it after a couple weeks because it was heart breaking.  After that during the first month the biggest side effect was the non-stop burrito/salt craving from the steriods, And the constant need to go to the bathroom.  We were up with Chan 3-4 times a night taking him to the bathroom, it was almost like we had an infant in the house.  My amazing husband always got up with Channing at night because of the 'toxic' urine and because I am not a very good person in the middle of the night and tend to make things worse.  We didn't get a lot of sleep that first month.

I was told that Chans hair should start falling out 2-3 weeks into treatment, so to prepare we cut Jakey and Chans hair shorter.  Channings hair did thin out a bit, and became more coarse in texture, but he never did loose it.  It still could happen but for now its the same length it was when I cut it because it isn't growing much.
Channing also had a hard time with physical activity during the first month and a half of treatment.  He couldn't walk in a sandy playground or climb the playground equipment.  It was so sad to see him try but not be able to do something he was able to do just a month earlier.  One of the chemos that Chan gets can cause problems with motor skills in the nerve endings, and this is what partially made it hard for Chan to do these things.  The other issue was the rapid weight gain that Chan had due to the steriods.  We would joke that Chan and I were competing for largest 'baby' belly, but that I had 9 months to get used to the weight gain and Chan only had a week. We avioded parks for that time, because it broke my heart to see him get frustrated when trying to do something he couldn't and not understanding why.  Now, he is basically back to normal with climbing, walking, and playing.  Though he does still make a very large stance with his legs to keep his balance when getting up.

Another side effect in the first month was constipation.  If you have read my blog up to date then you know a lot about what we dealt with.  Poor kid had to have adult laxatives multiple times to help him get cleared out.  He also had 4-5 x rays to the stomach tomake sure there wasn't anything stuck causing the problem.   It was very frustrating for me, and I was annoyed that such a 'small' thing as being constipated could cause such big problems in a cancer patient.  I also felt like a bad mom beause they would ask me when Chan had his last bowel movement and I had a hard time remembering if it was Jakob who went or Chan who went. I am constantly forgetting which child did what because they are the same age and do (did) things so similarly. 

After the the first month, most of the above side effects were limited.  Now, with his new medication Channing has no appetite, and things that used to be his favorites he refuses to eat.  He is also throwing up every other day to every 3 days.  We think this is because of the oral chemo he gets every night.  He are trying to remember to give him his anti-nausea medicine when we give him his oral chemo to limit his throwing up.  Poor kid does really well with the throwing up, he just yells "Im gonna throw up" and runs to the bathroom.  Then he lays down for about a half hour and is then back to his normal crazy self.  

Channing is basically a normal almost 4 yr old (I can't believe in one month my babies will be 4!!!).  He runs, plays, fights, and laughs.  He just talks about his dr and his port all the time.  He is far more knowledgable about medical things then any child his age should be but he does a great job of doing what he needs to do to get better.

Pics from Inpatient May 23-26

Since we had to wait for blood results for the inpatient we took our time and explored the AFCH and the UW Hospital.  They have a lot of fun play areas for kids which is great!

I was hungry so we decided to get some food at the cafeteria.  All Chan wanted was onion rings, but he told me I wanted pretzels and cheetos so we got those too :)

During Chans inpatient after he was no longer recieving his Chemo infusion we went back down to the cafeteria.  It was quite interesting holding the food tray, Chan's IV pole, all the tubes, and keeping Chan close so he didn't yank out his tubies.  We managed though :)

 Outside the cafeteria they have a fountain that people have thrown coins in so I told Chan it was a wishing well.  He really enjoyed making a wish and putting his money in there.

And now, we go back on Thurs for his next 4 day inpatient.  And I am sure we will be doing some of these same things again!

Trains, Clean House, and Stained Glass

When I walked in the door after we were discharged early from the hospital in May because Chan's counts were low I was greeted with a completely clean house.  It was spotless, vacuumed, dusted, cleaned, scrubbed etc.  Every bed in the house was made and it was a much needed boost after the frustration of having to leave the hospital earlier then planned and having two days at home before going back.  I will forever be grateful to the family who cleaned my house - because it was really really dirty, and because it put a huge smile on my face after such a frustrating event. 

The family also left a present for the kids.  

They play with this train set non-stop and actually play pretty well together with it.  They LOVE it, and I love that it keeps them all happy and occupied.  The family also gave each of the kids train whistles which the boys think are the coolest thing ever, and amazingly I have yet to ban them because of the noise :)

Jakob was sure glad to see Chan, and Chan was so happy to see Jakob.  Channing was most excited about sharing his treasure box toy with Jakob.  Chan choose a stained glass paint set.  There were 4 things to paint and the boys each did two.  They had a blast painting and I enjoyed seeing their smiles as they made a mess together.