Off Therapy

On Monday the 9th of September, exactly 2 and a half years from diagnosis, Channing had his last oral chemotherapy which means Channing is now officially 'off therapy' (OT).  It was a little weird and surreal.  And for me it didn't change too much.  Now, Kindt gets to go right to sleep instead of waking Chan up to get his meds.  Chan no longer has to stop eating 2 hours before he gets his meds, he can have a cup of milk before bed if he wants.  And I no longer have to bug my husband, sometimes after he falls asleep, to make sure that he gave Chan his meds.  So, our night routine is a little different, and Kindt is really enjoying not having to get up and give Channing meds.

It didn't really hit as reality to me that Channing was done, because I still had to take him to Madison on Wed for his 4 hour IVIG transfusion (to help boost his immunity).  The IVIG is extracted from the plasma from over 1000 blood donors, which makes me VERY appreciative to those that donate blood.  Up until Wed I didn't really know what the plan was for going forward.  You have this step-by-step plan for 2 and a half years. Over 200 pages of information is given at diagnosis which answer just about any question one could have like "if child has this reaction respond like so".  Details and details, nothing is unknown (well except how a child will react, but drug wise and protocol wise its all covered).  Then when you go OT you are given one piece of paper.  One small piece of paper which encompasses the rest of the child's life (at least that's how it felt).  For the first year Chan will get a physical, CBC with diff and platelets every 4-8 weeks.  For the 2nd year every 2 months, 3rd 3 months, 4th 6 months, and 5th year 6-12 months.  Then I believe they are called 'cured' and oncology monitoring is no longer required.

On Wed Chan's oncologist decided that we should schedule Chan's port removal surgery and stop the IVIG trans.  I thought we were going to keep the port in for 6 months and continue the transfusions, in which case I would still feel like we were on therapy because my routine wouldn't change and any illness would still send us to the ER due to the port.  I was a little taken aback, and asked her if she was sure.  She smiled a knowing smile, patted my arm and said 'yes, I am sure'. 

I have huge mixed emotions about this.  I am happy that this chapter is now closed in our lives, but I feel so much anxiety and fear about the future.  Wed was the first time that when the oncologist was giving me Chan's blood work my heart leaped into my throat.  I was scared for a split second about him relapsing.  Only 2 days off Chemo and I was already afraid.  I calmed down quickly and my anxiety probably wasn't noticed but it was scary.  All was well, but I am not sure I can handle that feeling every 2 months, or whenever Chan gets sick, or gets bruised, or anything abnormal happens.  The thought of relapse will always loom.  I will just have to learn to cope with that, and try not be too much of a hypochondriac when it comes to Channing (or even Jakob).  I did ask the oncologist what the rate of relapse and she said its technically 2% but because we don't have a lot of long term results for the trial Chan was on it could be up to a 10% relapse rate.  There are a lot of things to worry about long-term heart problems, liver problems and secondary cancers but for now we won't worry about those unless we have to.  My hope and prayer is that Chan's little body has done enough learning over the last 2 1/2 years that it won't produce those lazy leukemia cells ever again...

Relay for Life

Channing was asked to be a co-chair for our local Relay for Life event.  I asked Channing if he would be willing to tell people about his Leukemia and he said that he would write a book about it.  Channing did a great job writing his book, all by himself!  He was very excited to read it at the event. 

Everyone was very gracious about letting Jakob take part in the event.  Jakob got to start the 'Pledge of Allegiance" and he was allowed to walk next to Channing holding the survivor sign for the Survivor Lap.

It was an amazing event to be a part of.  I felt hopeful when I saw all the survivors.  I know that most aren't childhood cancer survivors but it still gives me a lot of hope.

Chan's Luminarias :)

Child Life explaining Leukemia

One morning, during the last dose of steroids, Channing freaked out on me when I asked him to take his meds (3 syringes, and 2 pills).  He yelled at me and said "I'm going to squirt this in Ema's, Jakob's and your face because you all have Leukemia and I DON'T".  It broke my heart when he said that and I realized that Channing needed a little more understanding of what was going on inside his body to feel a little more in control.  I did a lot of research of what to tell him, and how to explain it (honestly I didn't even understand it), and I asked a lot of fellow cancer moms how they explained it.  I was told about a FANTASTIC book that's called "Chemo to the Rescue" .  It's a very basic explanation of what Leukemia is and why you have to take Chemo.  It explains each part of your blood (platelets, white blood cells, and red blood cells) and their role in your body.  Then it explains that kids with Leukemia have weird cells in their blood that shouldn't be there (lazy leukemia), they are taking up space and blocking out the important blood cells, making the body sick because the other good, hard working cells didn't have enough room to work.  I read the book with the kids and Channing seemed to have a better understanding of what Leukemia is.

I also contacted Child Life at the hospital and asked if they could help Channing understand better what was happening inside of him.  Child Life is an AMAZING resource and they did such a great job helping Channing better understand.   Kris helped Channing make blood out of corn syrup (plasma), red hots (red blood cells), marshmallows (white blood cells), and rice (plasma).  Channing thought it was pretty awesome to be able to squish it around :) 

 After playing with the 'blood' they got JR out for Channing.  JR is a doll who has a port just like Channing.  They let Channing give JR medicine, and look at what a real port looks like. 

I think Channing really benefited from this experience.  I think he felt more in control and had a better understanding of it all. 

Last Steroids and Vincristine

During the last 2 1/2 years of treatment Channing has had 93 days of steroids, and 22 doses of Vincristine.  I will explain both medications below and what Chan experienced with each.

Dexamethasone side effects that Chan experienced - overeating, difficulty sleeping or falling asleep, decreased ability to fight infection, personality with mood swings, weight gain, puffy cheeks, muscle weakness, red face, serious mood changes including depression.

I HATE steroids.  I hate what it did to my baby.  In a matter of one week my son went from super thin to overweight.  I think he gained 15 pounds over the course of one month on steroids.  He couldn't even walk on the sand at the playground.  It was heart breaking.  He didn't understand that his body was different, or why he couldn't play he just couldn't.  So, I avoided going to parks the Spring Channing was diagnosed.  Channing was also depressed on his first round of steroids (which lasted 30 days).  He just wanted to sit in my room, in the dark and stare at the wall.  It was really hard to watch him just lay there in the dark.  He was only 3 1/2 he should have been running and playing.

Day of diagnosis, small little boy then... a few weeks later....

This last dose of Steroids were the WORST.  Channing was not only constantly hungry, not really sleeping, but he was aggressive and would threaten his siblings.  On more then one occasion Channing took a butter knife to Ellery's throat and threatened to cut him.  Thankfully, I was able to talk Channing down, and call to have someone get the other kids so I could deal with Channing but it was scary, and heartbreaking.  Channing didn't understand what he was feeling, it was the drugs.  Chan and I sat and cried together for about a half hour after the 2nd time he threatened his siblings and talked about what was going on.  There is no telling what sets Channing off when he is on steroids, anything could do it.  But, I just kept telling myself that this was the last time I ever had to give him steroids and that helped a little.  I hated loosing my little boy for those 93 days of steroids over the last 2 1/2 years, not to mention that they usually took a week or so to get out of his system and get him back to normal.  I am so glad that the steroids are finished and that I don't have to worry about 'roid rage' again. 

Vincristine side effects that Chan experienced:  hair loss (thinning and change of texture), constipation, pain and bloating in the abdomen, and increase in urination.

Chan's bloated belly.  The drs would tease that he was trying to outdo my baby belly with his belly:)

Channing never lost his hair completely but it did thin out considerably and change texture.  That was VERY hard for me.  It was a constant reminder that Channing had cancer.  People would point out that they could tell who was who because of the difference in hair.  I had to smile and pretend that it didn't hurt every time someone made that sort of comment.

Chan's thinned and weird texture hair

I was sooo greatful to be done with that last round of Vincristine and Dex.  I was an emotional mess dealing with all of Channing's side effects.  It was a very difficult few weeks for me. 

Wish Trip, Day 1, May 17th

May 17 is the date that the boys would repeat for MONTHS.  When are we going to Disney World?  May 17th.  When do we leave?  May 17th.  Finally on May 17 the kids could barely contain their excitement.  We didn't leave until early evening, so the boys were at school all day and when I picked them up everyone (crossing guard, parents of the others, etc) told us to have fun on Chan's trip, apparently it is all the boys have been talking about for awhile.  We were told at Chan's Wish Party that we would be picked up at 4:15pm from our house.  At 4 o'clock I looked out the window and saw a Limousine pull up in front of our house.  I was shocked, I honestly expected a shuttle van to get us.  Needless to say, the kids were sooo excited.  "Mom, that is the LONGEST car I have ever seen!"  "THIS IS GOING TO BE AWESOME!"

The kids loved the drive to the airport :)

Getting through the airport with 3 little kids and 2 adults is always an adventure.  Thankfully the kids were pretty good. 

 At the Wish Party we were given an envelope with a letter to give to the flight attendant on the plane to ask if Channing would be able to have a special meet and greet with the pilot.  I handed it to the flight attendant and we headed to our seats.  A few minutes later the flight attendant got us and the boys and I went to the front of the plane and got to talk with the pilot and co-pilot.  They were SO nice to the boys.  They let them push a few buttons. 

  

The pilot told the boys that they can't touch one of the buttons because it would shoot out laser beams :)  A little later on the flight Channing told me that he would like to be a pilot but he was afraid that he might accidentally push the laser button and hurt someone.  I had to explain that the pilot was just pretending with him :)  Cute boy, things are so black and white to him.  He is so trusting. 

The pilot, Channing, Jakob and the co-pilot in his Darth Vader mask.  The co-pilot asked if the boys wanted to try it on but they boys were too scared to turn into Darth Vader.  It was pretty funny but the boys talked about the Darth Vader mask all week.

The kids were really pretty good on the 2 and 1/2 hour flight.  Ema even fell asleep for a bit.

We meet with a Give Kids the World Representative at the Airport who helped us with our luggage, and helped us get our rental car.  She had a sign on it with Chan's name on it. 

The kids were exhausted (we landed at 11pm) and they slept through the ride to the resort, and all through check in.  The kids were each given a welcome gift Mickey Mouse for Ema and Shamu for Jakob and Channing.  Then we crashed in bed as soon as we got to our room.

Wish Trip Day 3, Animal Kingdom and Wish Star

 Every Wish Child is given a Star to decorate and give to the Star Fairy who then puts it on the ceiling of the Castle of Miracles while the child is sleeping.  Channing was very excited to put his star up so Sunday morning after church we went to the Castle of Miracles and let Channing decorate his star. 

Channing was really nice and let Jakob and Ema add a decoration onto his star since they have been affected by Channing's Leukemia as well. 

 

 Once it is all finished, the Wish Child gets to put it in the special star chest where the fairy gets it and puts it in it's special place on the ceiling of the Castle of Miracles. 

Channing's star on the ceiling of the Castle, along side of so many thousands of children who have life-threatening illnesses. 

Channing's is in the 8 Constellation Dream, on the top right.

 After putting up Channing's star, we went to the Ice Cream Palace where you can get ice cream all day long!  As much as you want, even for breakfast!! 

Channing usually opted for a bowl of sprinkles, or whip cream.  The other kiddos got a different ice cream concoction every time.

After our morning at GKTW we headed out to Animal Kingdom!  

We met A LOT of characters.  The kids enjoyed seeing them, and for the most part gave them hugs.  Channing wore a special button that identified him as a wish child, so we went to the exit lines and saw all the characters without waiting in line. 

 The kids enjoyed the Safari, which is always one of my favorite rides!

We went on the River Raft ride and got stuck on it in the rain, which wasn't all bad because we were wet anyways :)  Also, Jakob and Channing were brave enough to go on Expedition Everest, and Channing even went twice!  Brittany, Kindt and the boys went the first time, then I asked which boy wanted to go with me and Channing said he would go but he would close his eyes the whole time and I would have to hold him tight.  I wish we had the picture they take because it was hilarious, I am screaming my head off and have Channing in what looks like a head lock while he is covering his eyes.  One of the favorites was the Finding Nemo show which was amazing, and the kids LOVED it.