Port Removal Surgery

 My son taught me a very valuable lesson the day before his port removal surgery (Sept 25th). We were both pretty terrified about the surgery.  The day before Chan came home from school and told me that he wasn't scared anymore about getting his port out, that it was a good idea to get it out. I asked him how he decided that and he replied "The Holy Ghost helped me know that it was important to get my port out". Such a beautiful, innocent faith. I am grateful for the faith of a child for helping me to realize that with God anything is possible and I can be comforted when I am scared.  

Chan was still nervous, but did pretty well.  He brought bear bear, his buddy who has been to most of his treatments, and his fishy blanket which came to all his big treatments as well. 

Last pictures of the port inside his cute little body!

 

Chan first said he wanted mommy to take him into the surgery room but at the last second changed his mind to Kindt.  

 The surgery took less then 30 mins and Chan was tired and loopy but pretty good afterwards. 

We even got to keep his port!!  Chan was pretty excited about showing everyone what was inside of him for 2 1/2 years.

It was an adjustment when Chan had to have his first arm poke, because of all the bad ones he had at local clinics at the beginning of treatment, but thankfully he is a trooper and is doing well now with it all. 

Channing had Cancer

I was talking to a group of friends and family and someone mentioned that they knew someone who was just diagnosed with Cancer.  Ema who seemed not to be paying attention, looked up and said so calmly "Channing had Cancer".  It was quiet for a moment and I replied "yes, Ema he did".  Then the conversation continued.

 I have thought about that random fact inserted by my daughter a lot and many emotions come to mind, and many thoughts that I can't fully express.  I am grateful that it is something that she can easily say because that means her life didn't change as drastically as mine did when Channing was diagnosed.  I am also grateful that she was able to use the word had.  It mean past tense, used to, but doesn't anymore.  And that in and of itself is huge.   It also made me realize how nonchalantly we have tossed out there that Channing has/had Cancer.  But it was such a fact of life for us, and sadly always will be.  The shock factor has gone out of the statement "my son had cancer".  And that breaks me.  It makes me feel like I failed.  It shouldn't be such an easy casual statement to make.  Not for me, not for the 36 families that hear that their "son/daughter has cancer" every single day.  For now, the fact that my son survived will have to be enough, we are working through the healing process every single day.  I can't battle awareness when I am battling my own demons.  But someday, I will do more to raise awareness for Childhood Cancer, until then I will just acknowledge my sweet babies words and hug them a little tighter.  

On a side note, the boys (first grade) brought home an assignment to make their own personal flags.  Complete will all things that represent them and who they are.  I am struggling with getting started on this project because I know that Channing will want to put "Survivor" and a cancer ribbon on it.  Which is great for awareness, but I want him to start identifying with other things within himself too.  Cancer isn't who he is, just a part of what makes him who he is.  And, it sets Jakob up to feel weird about not knowing what to put on his flag.  He already wishes he had cancer because of the Wish Trip and all the cool things that Chan got.  I don't want him to resent his brother, or be jealous of him.  Such a hard, fine balance for a me to create and maintain. 

To be completely honest, I hate cancer.  I hate what it did to my son, I hate what it did and is still doing to me.  I hate that I struggle with stupid things because of cancer.  If cancer had a face, I wouldn't hesitate to completely beat it up, and I wouldn't even feel bad about it.  Take that cancer! ;)

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.