Pics from the hospital

We love the American Family Childrens Hospital.  We pretty much always see the same check in nurse, nurse and dr every time.  Only once was our check in nurse different.  Because of this Channing is a little more comfortable and they all remember him and how to make him at ease. 

When we arrive we check in at reception then the nurse gives Chans arm a hug (blood pressure), squeezes his finger (oxygen levels), and checks his weight, height and temperature. 

Then we are taken to the clinic room where we can play with the chalkboard, watch cartoons, and just relax.  Channing also gets to pick out a sticker after the initial nurse check in. 

Then the other nurse comes in and gives Chan pokes by accessing his port.  Then they draw the blood and keep him accessed for his chemo and if he needs a blood transfusion.  After we are done in the clinic Channing gets to pick a toy out of the treasure box for doing so good.  They also allow Jakey to pick out a toy :)

On Tues after the clinic but before sedation we had a little time to waste so we took the kids and Grandma Rani to tour the Ronald McDonald house. 

The boys really enjoyed the playroom with all the fun toys they have to play with. 

Jakey is very excited to sleep their tonight with mommy!!

Inpatient Days 1 and 2

We arrived for clinic Tuesday morning at 10:30. Grandma Rani and Jakob came with us so they could drop us off and have the car at the house while we were in the hospital.   All Chans counts came back great so we were ready for our hospital stay - except a room wouldn't be available until after 3 pm.  So, we wasted a little bit of time by going over to the Ronald McDonald House and giving Jakob and Grandma Rani a tour of it.  The kids played in the playroom for a bit and seemed to have a good time.  Jakob was excited to come and stay there with me on Thurs night.  After that we were dropped off at the hospital and Chan and I played in the waiting room at the hospital for a little over an hour while we waited for our 2:45 sedation.  Sedation went well - they did a spinal chemotherapy.  Channing does not like waking up from sedation.  He is very irritable and grumpy, which is not fun for me but once he eats and really wakes up he is back to his goofy self. 

After sedation a room was ready so we went up to the 4th floor.  We played, ate, and looked out the window at the parked construction trucks.  For some reason Chans orders from the pharmacy weren't up yet until 7:00.  And then we had to wait for his hydration and PH levels to be within range so we had to wake Chan up too pee every hour.  Finally at 2 am he was within range so we started the IV chemo.  It was not a lot of sleep but we survived.  Channings appetite goes down when he gets Chemo but they say it is nothing to worry about, since he is getting a lot of fluids through his IV. 

Daddy came up last night and relieved me.  Kindt and Channing played Dora on PlayStation, and Channing wouldn't let Kindt stop playing :)  I secretly think Kindt enjoyed it!!  Today Channing got a bath, because he is just getting fluids no Chemo so they could unhitch him for a time.  We have been playing in the playroom and just having fun.  Jakob is going to come up tonight with daddy and stay with us so that will be a lot of fun for the boys.  Tonight Chan will get some medicine that will counter act some of the affects of the chemo and get his levels back up.  Once he is within range we will be released.  Hopefully that will be tomorrow morning but it may not be until the next day - it all depends on how his counts and levels are.  Grandma Rani will come up tomorrow with Ema just in case we are sprung and if not then they will spend the day with us and help relieve me from constant Channing entertainment.  Also, we get to pick up my mom Grandma Robyn from the airport tomorrow so that will be loads of fun.  Though we are also sad cuz Grandma Rani will be leaving us on Saturday and she has been a huge help with all that is going on. 

I have some pics to post, but can't save them on the hospital computers so I will have to wait to post them when Kindt arrives tonight with his laptop. 

First Inpatient Postponed

We woke up Thurs morning, planning to spend the next 3-4 nights at the hospital while Channing received more Chemo.  That is not how things went.  Channing woke up complaining of an ear ache, and not wanting to eat breakfast.  When we got to the hospital we first went to the clinic to do labs and talk to the dr about Channings ears.  Turns out Channing has a double ear infection.  Because of the infection and the antibiotics needed to clear out the infection, Channings chemo needed to be postponed till Tuesday of next week.  While its a bummer because Kindt was going to stay at the hospital with us all weekend for this first time, and we were all prepared for the stay, its better that Chan be healthy for the chemo and not stress out his body more with dealing with an infection and chemo. 

Now, we are going to enjoy the Easter weekend and celebrate the real meaning of Easter since we went through all the Easter bunny hoopla already last weekend in anticipation of not being home on Easter.  Grandma Rani and I are going to have a much needed girls afternoon out tomorrow going to the movies, getting our nails done (thanks for the gift card friends!!!), and eating a delicious meal out!  It has been a little overwhelming of a week with two kids with ear infections (will someone please explain to my little boys that ear infections aren't contagious, because they both have them...), and my baby dr appointments and the rest of the other things that occur on a daily basis so I am REALLY looking forward to getting out of the house kid free and all things dr related free! 

I hope that you all have a fun Easter weekend, and that you are able to enjoy celebrating the Resurrection of our Savior Jesus Christ.

Alyssa

Phase 2

For multiple reasons this last week has felt basically normal.  Chan is only on one prescribed medication a day now, which, compared to the 4-6 that he was previously on, feels like nothing.  He is active: playing, laughing, talking, and fighting just like normal.  The only reason you can tell he is sick is because of his weight gain.  Another reason it has felt basically normal is because we have a visitor!!  Grandma Rani is here for a few weeks which has lifted my burdens immensely and helped with all daily tasks as well as going above and beyond with babysitting so that Kindt and I can get out of the house and accomplish other things that need to be done.  Having another person here is SOOOO nice!!  Chan has also gotten over the massive cravings and consumption of food.  He is also not up the 4-5 times a night to use the bathroom like he was when on the steroids.  This has helped Kindt and I get a little more sleep and feel more normal and capable as well, though for some reason I am always still exhausted, which probably has a lot to do with the baby growing inside me!  These are all reasons that there haven't been any updates because we have been super busy, and just enjoying having Chan's crazy self back. 

We are now on second phase of treatment (called Consolidation) which also means Chan is in remission!  The cancer is no longer detectable in his bone marrow and blood which is great news.  Though, if they don't continue treatment for the next 2 and a half years the cancer will come back full force.  So, while the cancer is mostly gone, Chan will still have a lot more treatments and medications which come with chances of side-effects, toxicity, and so much more.  In Consolidation, Chan will have 6 planned hospital stays of 3-4 days a piece.  The reason he has to be in the hospital is because they have to do an IV drip with one of the chemo drugs that's administered over 24 hours, and then additional medication is given over the following 2 days.  Our first hospital stay is scheduled for this Thurs - Sunday.  Because of this, we celebrated Easter a week early.  As long as Chan's blood counts come back within range on Wed (local clinic will draw blood), we are set to go up to the hospital for the weekend.  He will get his first round of this new treatment probably starting Thursday evening. 

AFCH has never had this new protocol for treatment, so we are all kind of learning about it together.  To give a little more background, we are on a clinical trial for Leukemia, and the branch of the study we are on was just introduced nationally back in August and has only recently begun in Madison.  "Clinical Trial" may sound a bit scary and experimental, but the trial he is on is based on previous, more experimental studies.  Clinical trials are categorized based on how "experimental" in nature they are, with a Phase 1 trial being the most experimental and a Phase 3 trial being the least.  Chan is on a Phase 3 trial, which again means the trial has gone through previous testing and has been proven to work and be effective.  Now they are just trying to see if this treatment therapy is "better" (meaning less toxic but same survival rate) then others by comparing them side by side.  Children in the Low Risk category of the study (like Chan) are randomly assigned to one of two branches (actually called Arms), and we were chosen to be on a treatment arm that is very different from previous protocols the hospital has had. 

We are very excited about being on this arm for multiple reasons.  First, even though there are hospital stays (the other had none) the treatment is much less toxic.  So the hope is that the long term possible side effects of the treatment will be lessened.  Second, if all goes according to the time-line, then Chan moves into the next and final phase of treatment (called Maintenance; visits are every 2-3 months) before the baby is born.  They've been sure to warn us that things never go according to the time-line, because if Chan gets sick or his counts aren't within the proper numbers everything gets pushed back.  But at least it will only be a little bit of time with a newborn and Chan in Consolidation.  And third, the treatment will only be for 2 1/2 years as opposed to 3 1/2 years.  We are very optimistic and eager to get things going so that we can get through consolidation as quickly as possible!!

And this post wouldn't be complete without another huge THANK YOU to everyone out there supporting us.  I know that I could call any of you at any time and you would jump up and do anything you could to help us.  I love the sweet letters and cards we have gotten in the mail, and smile every time I look back at the letters and cards we've received.  I do want to apologize to anyone who I have not responded to, I tend to do a quick email check and read the messages and then try to remember to respond later and sometimes forget.  I am sorry if this has happened, message me again and hopefully I will be able to be better at responding :) 

I hope that you all had a great week like we did!!

Thought Exercise

I found an article online talking about a double standard that exists amongst some doctors when asked if they would choose one treatment over another for their patients and then asked which they would choose for themselves.

It's also a good way for me to try out using polls in the blog. 

Which treatment would you choose for yourself?

Which treatment would you choose for your kid?

You might be interested to know that doctors often chose the more "risky" treatment (the one with higher death rate but less chance of side effects) and chose the opposite for their patients.  You could either spin this as the doctors being more concerned about the patients then themselves OR you could say that the doctors are more willing to have someone else live with side effects then themselves.  You decide.  Maybe it's a little of both.  I have a feeling that a lot of us will be making (or already have made) these type of decisions for ourselves or our loved ones at some point in our life.

Sorry to end on such a depressing note.  This is the type of stuff that popular medical shows and TV dramas are made of though.  The "gray" areas/decisions are what make life so interesting in some ways.  Also, as a disclaimer, we have not had to make that decision with Chan.  We have been very fortunate that his treatments have had both excellent outlooks and lower side effects than others with the same diagnosis.

Here's a silly picture of Chan from last year to help lighten the mood:

- Kindt

Quick Update

I only have time for a quick update right now but will have more details later.  I just wanted to let everyone know that we have been told that Chan is being put on the arm of the clinical trial that we were hoping for!

The big picture right now is that Chan will only need to be on treatments for 2 1/2 years instead of 3 1/2, his treatments are going to be less harmful to him in the long run, and the down side is he now has 6 inpatient treatments that will last about 3-4 days a piece every three weeks starting Easter.

If everything goes according to plan (which apparently is quite rare), Chan will be in Maintenance (less frequent hospital visits and less medication) by the time the baby comes and school starts!

- Kindt

Pictures

The other night we were all on the floor and I decided to start a dog pile on daddy.  Ema and Jakey thought it was a great idea and jumped right in on the action.

It took Chan awhile to decide it was safe for him and then he dove right in too!

It was so sweet to see my family playing like old times.  They were so silly and so cute, non stop laughter filled the house :)

After the excitement wore down I took some pics of the boys next to each other.  It still amazes me that they will be 4 soon.  We have been told many times that its much easier to tell them apart right now.  Hopefully the steroid weight gain will go down now that he is off them and he will feel much more normal.

LOVE MY BOYS!!!

Steroids

Chans last dose of steroids for now was on Friday morning.  It has been so fun to see him back to his crazy, goofy, non stop talking self on Saturday and today.  The steroids really did a number on his personality and I am thankful to see my baby coming back to life.  Right now he is playing grease monster with his daddy and brother and I think I am going to join them :)

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 :)