Last Day of Induction

Today should be the last Chemo treatment for Induction.  It is crazy to think that in just a month all of the cancer is mostly gone, and Chan is technically in remission (at least that is the hope we will find out the results prob next week from todays biospy).  Even though the cancer is not present in his blood or in his bone (for the most part), if he doesn't continue treatment for the next 3 yrs it can and most likely will come back full force.  Today we will find out more about which course we are going to be on for the second phase of treatment that will prob last 6 months or so.  It is exciting but a little scary because it will be new Chemo treatments and new over the counter meds to give him.  Hopefully he will react as well to the new regimine as he has this past month of treatments. 

Today Chan is going to be sedated for a bone marrow biopsy from the hip, he will also get a Chemo treatment right to the spine.  He isn't allowed to eat for 5 hrs prior to the sedation and that is not an easy thing to handle for a boy on steroids whose life revolves around food.  I woke him up early this morning and fed him just before the time that he couldn't eat came around.  Then we all went back to sleep.  When we woke up almost 2 hrs later one of the first things out of Chans mouth was, "Can jakob eat a bagel for me?".  He remembered he couldn't eat but still wanted a bagel so wanted Jakob to eat it for him.  I am in constatnt awe of how much this kid understands and how little he fights me when it comes to things I tell him the dr says.

Here are some old pics that I love of Chan:

This is the day we found out he had Leukemia. 

This is a picture Chan drew of monsters in the hospital, it was the first time he had drawn a mouth on something.  Then a few minutes later he added legs to his monster. 

Right now Chan wants me to make him a bunch of food to take in the car so that he can eat it after the dr.  He is such a trooper!!

Happiness and Laughter

I started writing this post and never posted it.  Today I read a book to Chan that we were given from Badger Childhood Cancer Network that reminded me of the post.  First I will tell you about the book and some of my favorite quotes from it, then you can read what I wrote a few weeks ago. 

This book was written by a young man who had been diagnosed with Hodgkins disease.  He actually started this book before he found out he had cancer when he walked into a classroom happy and joking and found everyone around him in a very bad mood.  He started drawing and the jester came to life.  The basis of the book is that "The Jester has lost his jingle" and was banned from the Kings castle.  He then travels along to find out where all the laughter has gone.  The jester asks a homeless man and the homeless man says something along the lines of, why would I laugh when I have no job and no money, nothing about that is funny.  The Jester asks a few more people and responses are quite similar, "The world is not a funny place.  It's filled with pain and tears".  Jesters friend Pharley tells him not to believe them they must be wrong, we can find laughter somewhere.  They then walk into a hospital and find a little girl lying in bed with a bandage on her head.  The Jester asks her where her laughter went and the girl replies, I have a tumor, why would I have a sense of humor when all I feel like doing is crying.  This is what the Jester replies,

"Sometimes I feel like crying too,'
the jester whispered in her ear.
'But instead of letting teardrops fall,
I make them disappear.

Whenever I feel like crying,
I smile hard instead!
I turn my sadness upside down
and stand it on its head!

When I get sad or lonesome,
or when I get depressed,
that's when I sing my loudest
and dance my very best!"

Then he goes to the King and lets him know that he found where laughter has been hiding.  Its hiding in each of us and its up to us to let it out.  And the end of the story says,
"So when you're feeling lonely or sad or bad or blue remember where the laughter's hiding...its hiding inside of you!"

I love this story!! I love how the jester helps those who are struggling find laughter and happiness.  Everyone needs it in their lives no matter what they are going through.  Here is what I wrote along these lines a couple weeks ago...

I often hear from people that Kindt and I seem to be handling things well. When I was a teenager I remember my mom always telling me that "I am in charge of my own happiness". This has stuck with me throughout my life. No matter what comes, no matter what happens, I am ultimately in charge of how I respond and how I feel. I have been on both sides of the track - choosing to be bitter and resentful for circumstances beyond my control and I found that it didn't get me where I wanted to be. Because of past circumstances, experiences and trials I choose to be happy, I choose to be positive. I can't change that my son has cancer, I can't magically make him better but I can show my son happiness, I can teach him and my other children what my mom taught me. I don't want my children to remember mommy being upset and bitter during this time, I want them to remember how happy we were as family even in the face of adversity.

-----Religious Content Disclaimer-----

I also realize that a lot of my perspective comes from my faith in a higher power, namely Jesus Christ and Heavenly Father, and from what I've been taught in church my whole life (for those who aren't aware we are members of The Church of Jesus Christ of Latter-day Saints). I believe that Christ suffered not only for our sins, but also to be able to know how to empathize with and comfort us as we battle our sons cancer.  He understands my thoughts and pains and knowing this comforts me through this difficult trial in our life. I am grateful for a Father in Heaven who listens to prayers and works miracles in my life and in the life of my family.

I know that because of each of your prayers miracles have happened, and will continue to happen. Each of you has already been a miracle in my life for your love and support, and I am so grateful for such an amazing support system. Thank you!!

One week difference

This picture was taken one week ago on Sunday.  This is Chan and little sister Ema.

This picture was taken today....

What a difference a week can make in the body of a Leukemia patient.

First ER visit

Don't get too worried, it was because Chan is still constipated and they wanted to do another Xray and get some fluids in him through an IV to help get his bowels moving. 

I was hoping to get through induction (which ends on Friday, hopefully), without an ER trip that is so common with children who have Leukemia.  Sadly, last night we had to go in because of what I wrote above.  Chans tummy is still so large and he will randomly groan.  He doesn't act like he is in pain, and when I ask him he says he doesn't have any owies.  Either the kid has a very high pain tolerance or is just afraid to tell me he has owies so we have to use a very low threshold when it comes to anything with him.  One of the side effects of the VinCristine Chemo that he has had for the last 3 weeks can cause an obstruction of the bowels, thankfully he doesn't have that but he is impacted with lots and lots of stool.  I called the nurse just to let her know my concerns over his tummy and she wanted to get the xray just to make sure it wasn't something that they needed to see him in Madison for overnight.  I packed an overnight bag just in case but thankfully, we didn't have to use it.

At the ER they did the x-ray, saw there was lots of stool and gas pockets, drew blood, attached Chan to an IV through his arm (no one but AFCH is allowed to access the port so there is no contamination), and gave him another adult dose of laxative.  4 hrs later we were on our way home (about 8:30 pm).

Chan was not allowed to eat at the hospital or at home that evening because they didn't want to add more to the backup.  This did not go over well with our little steroid food craving child.  All he talked about in the ER was chips, a sandwich (I packed us each one because it was going to be dinner time while we were there), burritos, mac and cheese, and dip dip.  Poor kid did not like it when I told him he couldn't eat.  When we got in the car he asked if he could hold his sandwich.  I told him no, because he can't eat and he was so upset and said "mommy I just want to hold it".  I made him promise me (as much as that holds water with a 3 1/2 yr old) that he wouldn't eat it.  He held true to his promise and just held the sandwich all the way home.  Poor kid. 

Chan talked to Jakob on the phone at the ER and Jakey told Chan that he (Jakey) had just gotten owies.  Chan was worried about Jakey and his owies even though he was in the hospital. The second we got home Chan went to Jakey and asked to see his owies and wanted to know if Jakey was ok.  Jakob was asleep so didn't resond but Chan rubbed Jakeys hair and said I hope you feel better.  My sweet sick boy was worried about his brother even with everything going on with himself.  This kid is going to be an amazing young man in the future!!

The instructions for home was that if he didn't have a bowel movement through the night that we were going to need to go to Madison in the morning. He had an ok time in the night passing some of it through so we are clear to have fun today and just keep up on all the laxatives to help him out!

Chest Port

A few people have wondered where Chan's port is attached.  I found this picture online that shows more or less how it is attached inside Chan's body... 

http://www.uwhealth.org/healthfacts/B_EXTRANET_HEALTH_INFORMATION-FlexMember-Show_Public_HFFY_1116944249855.html

The port is used so that there is easy access to his blood for blood work and as an easy access point to put Chans medicine into his body.  The only people who can access the port are the doctors at American Family Children's hospital.  If we ever do a blood draw away from AFCH then they will have to do it in his arm. 

Here are some pics of Chan at the clinic.  I love the fire truck room, the whole hospital is set up so well for kids, it makes me so happy that they work so hard at making the kids as comfortable as possible. 

A closer picture of Chan with the 'tubies' connected to his port.  We are waiting for his blood work to get back so we can start the Chemo.  Chan mostly likes to just watch cartoons. 

Notice the large belly...this kid seems like he is 9 months pregnant.  Massive cravings, inability to move without being helped, and can't roll over.  We are still working on getting that belly cleaned out so he feels a bit better!

Random other things that I just thought of mentioning:

Chan cannot have vaccinations for the duration of treatment, he also cannot go to the dentist because they don't want any chance of bacteria to be able to enter into his blood stream.  It will be so weird for me to just have Jakob get vaccinations, and for just Jakob to go to the dentist but that is how things are now. 

Changes

One of the biggest and hardest changes in our life right now is our children's interactions with each other. Channing and Jakob, since they are twins, have been inseparable since birth. They have always been best friends, keeping each other entertained and playing together pretty well. Since Channing became sick this has changed dramatically. Channing mostly wants to be left alone, laying in bed. Jakob still wants brother to play. Jakob is pretty good about letting Channing be most of the time but has an unending amount of energy that is not getting out. I am usually pretty exhausted most of the time because of not sleeping well and being pregnant so I do not have the energy to run Jakob out of energy. Jakob is also seeking attention, which I don't blame him everything has changed from the focus on both boys to the focus of Channing. A lot of the time Jakob will do naughty things just to get attention, and its so hard for me to know how to handle him when he does this.

Ema is still Ema, just as feisty and cute as ever. Though she pushes Channings buttons, which I think is part of the reason Channing likes to be behind closed doors where sister can't get him. Channing has been very protective of his port and Ema knows this and will come running at him and hit him right in his chest. Any time she does this she goes in time out, but that doesn't seem to deter her from doing it again later.

It has been a month since all the kids have played together like 'old' times. It has been a month since Jakob has had his best friend. It has been a month since I have seen my babies happily playing. There have been glimpses of the past, in which I just watch and smile. One of these times was when two sisters (14 and 10) from down the street who attend our church came and played with my kids so I could get other things done. Chan was even playing make believe, smiling and laughing with them. I don't think I can ever thank those girls for the few hours they spent with my kids and for the smile the put on my face, and in my heart to see my babies as they once were. I am hoping to have the girls or at least one of them come once a week after school to be Jakobs special buddy and to play with all the kids.

Another moment was yesterday morning. I woke up to the sound of my boys talking happily in their room. This is something that was a usual in our home pre-cancer. I stood outside their door smiling as I listened to their happy voices and was so thankful for that glimpse that things will be ok and life will be as it once was. The topic of their conversation was Channings port, as conversations in our life typically revolve around cancer, food, or Channings port. It was a big eye opener to me that my baby has had to grow up fast. He is dealing with something most people don't ever have to go through. He talks about medicine, and cancer, and his port, and Leukemia, and food (of course) always. Those are the things that are most important and prevalent in his little life so thats what he talks about. I think this is sometimes weird for others. We talk openly about Channing's cancer because it is a part of all of our lives and will be forever. I wish my baby never had to know of these things and have them be such an integral part of his life at 3 and a half, but they are and thats just something we all have to get used to.

We have learned to praise the little things, like anytime Chan does his shoulder shrug, anytime Chan smiles, anytime he does something other then sleep or eat we get excited. This morning Chan went to the bathroom all by himself, which is another thing that hasn't happened since he was diagnosed! Kindt and I were SOO excited, another little step that shows that things are going to be ok.

We have had cancer in our lives for one month. I think it is still sinking in that our baby is so sick. Because he has been handling it so well and still hasn't had any pain, and his blood counts all look great. The biggest issue we have had is his constipation. I cried on the way home from our Madison appointment praying that my baby would poop so that he would feel better, fearing that if he didn't we would have a hospital stay over something seemingly small like constipation. Nothing is small anymore when it comes to Channing, anything can send him to the hospital. I thought we were doing so well, and we were but Channing was constipated and that is a big problem. Things can change in an instant, but I know that as we continue to do everything we can, and as each of you continue to think of us and pray for us for the 2 years 11 months we will all get through this together and all be better because of it.

Thank you for everything each of you does for us, you never know when that message, card, letter, or package will mean to us. On Thursday I was having a hard day after Chans appointment and knew that once we got home I was going to be spending most of the evening in the bathroom with Chan, and that Jay and Em were going to be on their own. Right when we got home I took the kids on a quick walk to the mailbox to get Chan some fresh air and get him moving. Inside there was a package from a dear friend. It was a movie for us and a sweet card. It put a HUGE smile on my face, and my kids were SOO excited. The second we walked in the door the movie was put in and Ema and Jakob sat and watched it and I was able to focus on Chan. My friend didn't know that I would get it after such an emotionally difficult day, she didn't know what it would mean to me, she just did something she could do for us. The point of this story is to let each of you know that each message, each hug, each thing you do that may be seemingly small to you, is not small to me. It makes this whole situation that much more bearable. Each time I open my email and see messages from one of you it boosts me up, each letter we get in the mail saying that you are thinking of us gives me a little more motivation to keep on going, each smile I see, or each offer of help helps me know we are not alone. I can never thank each of you enough for being such a great support to my family and I. THANK YOU!!

update

All went well through the night, so we are good to have a good weekend, and just keep a vigilant eye that Chan continues to produce enough 'waste' to cover what the kid is eating :)