Port Removal

Finished

Last Wednesday night I took off my cancer necklace.

It said:

What Cancer Cannot Do
It Cannot...
Invade the Soul
Suppress Memories
Kill Friendship
Destroy Peace
Conquer the Spirit
Shatter Hope
Cripple Love
Corrode Faith
Steal Eternal Life
Silence Courage

The necklace is worn and fading from frequent massage, but still legible. I tucked it away, feeling somewhat like I was losing a limb (having worn it faithfully for three years)... but I knew it was important that I take it off... not waiting to see what Jace's next blood work shows... not waiting for the CBC after that. Instead of hanging on to fear, I had to give all of my heart over to the very real possibility that Jace will never face cancer again.  At this point, exhausted and emotional, I'm not sure how my little family could survive otherwise. It's soooo time to be finished.

I also removed my Iron Man Jace bracelet. I'm going to save it for basketball, football, and baseball games.  For some reason I felt a strong prompting that if I continued to wear those things, I wouldn't let go of the fear of it not really being over. Maybe I'll put them back on in a few years when I'm not so scared. Jace has had a bad cough this week, he looks pale, and it is obvious his little body is fighting something. It's ALL I can do to not worry about the possibility that as I type there's a cancer cell somewhere in his body trying to multiple and invade again. Is now a good time to ask for continued prayers on behalf of Jace? I worry that the prayers he's received are going to stop... and he needs them now more than ever.

Cancer CANNOT destroy peace...shatter hope... or corrode faith. I do have faith that 'what will be, will be,' so I have to put this trial in the hands of a very loving Heavenly Father. Some of you gave me good advice in the beginning of this journey to replace fear with faith.  Overwhelmingly, that's the lesson I've learned.  Maybe I've written this before (hard to remember), but sometimes when I look at Jace I feel guilty that because I had so many lessons to learn...maybe this was the reason he had to endure this awful process.  Others have told me they've felt this way too.  Our Ironman AND Hayden have taught us so many valuable things: mainly courage,  hope, and faith.

Now is the time to put these things to use.:)

This might be my last regularly scheduled post. I am going to close the blog and move on. I'll try to put an update on the blog and open it once in a while, but mostly I think we are finished for now.

Thank you so much for your continued prayers and faith. I'm so grateful for the experience of sharing this journey.

I really do love you all.:)
Amy

Letting Go

As I drove home last night, I found myself trying to remember out loud, a phrase I'd read or heard. I thought it went, "My Cup Runneth Over..." Hayden was with me and he asked, "Did you just say something, mom?" I know he thinks I'm a bit crazy, because I do talk to myself often... but this time I didn't realize I'd whispered it audibly.  I was just thinking of the verse from Psalm 23, which indicates abundance, Divine favor, and joy.  That was our celebration day. From morning until night, we were surrounded by people we love dearly, and who we know love us back. We were surrounded by abundant, Divine, JOY. 

The blood drive was a huge success. It was suppose to be a small day with a goal of 18 donations. We received 24. Friends and family filled the schedule sacrificing their time and comfort to perform an act of service that is, in my mind, 100% selfless. Although I snapped pics throughout the day, I hate to post them without permission of each person, so I'll just include my own. Luckily Jace was there holding my hand...:)

Joan and Brittney successfully supervised the creation of several blankets and thank you card kits. We will donate the blankets to our local "Shop with a Cop," and we will take the cards to Primary Children's Hospital in Salt Lake. Thanks to everyone who donated time, fleece, and/or card kit material. Also, Bethany and her dad brought their AWESOME photo booth for the entire crowd to enjoy. Thank you Wilsons, SO much. It was amazing to see how everything came together.

The best part of the night though was looking at the crowd right before we launched balloons. SO many people who have supported us throughout this journey were able to be with us last night. I wish now that I would have taken a picture of the crowd as I saw it when Jace stood on the chair in front of them to tell them thanks.  The first part of the video is a little hard to hear, but in essence he said he was grateful to have so many friends and family members who have supported him for the last three years.:) 

There had to be over a hundred people in the room...and as I scanned the faces in the crowd I felt such a strong love for everyone there. It was really amazing. Thank you, thank you for joining us if you were there. If you weren't, and you celebrated on your own...please email us a pic. We felt your love, and we missed you.

The pinnacle of the evening was absolutely the balloon launch.  "My Cup" really did run "Over" as I felt a truly deep abundance of love and joy. I only have a few pics (send me some if you have any?), so I'm at a loss for how to explain the beauty in seeing our gym-filled crowd receive balloons and proceed outside to help us "Let Go" of Jace's cancer. 

 10...9...8...7...6... 5... 4... 3... 2... 1!

Deep, powerful exhale.

And it was gone.:)

Love you all. 

-- Amy

P.S.  As the balloons whipped away in the wind, Jace lead his cousins on a chase across the field toward the glowing dots, screaming with excitement and joy, and yep, you guessed it... 
he was running.:)

The "Running Man"

Friday Night at the Madison Football Championship Game

Before the cancer word was real in our family, I rarely danced in our home. ONCE in a while, I would try to impromptu waltz with Matt or one of the boys, but they would shrug me off and be amused but annoyed.  Or, if a great song was playing on the radio I would take the boys' hands and try to teach them to "country swing," but that also died quickly. I always enjoyed dancing, but my love for it didn't carry it into our busy, all boy, football-baseball--world.

There was a time though, not long after Jace was diagnosed that the only thing to make him smile, was me doing the old school "Running Man." He'd be so sick on the couch, grouchy and hopeless-- at my mercy if you will, and desperately I would grasp for anything that would make him smile. Apparently, I look pretty goofy with my 90's Hip Hop dance moves, because inevitably he would smile, and we would both end up giggling a bit.

Friday morning before school we were alone in our house when I gave Jace his last oral chemo meds.  Matt was already at work, and Hayd had practice. I couldn't just give Jace his last meds without celebrating though!!  He was in a hurry, looking for his backpack when I approached him with a HUGE smile on my face and his final spoonful of applesauce. He gulped it down and turned to go, when to his surprise, I started cheering AND doing the "Running Man":

"WOO HOO! ...AH YEAH! UH-HUH! YOU DID IT! ...THAT'S RIGHT! ...UH-HUH! ...AH YEAH!"

Jace shook his head in dismay. "Um, mom? Oh my gosh. Stop....Seriously, MOM! Stop."

"WOO HOO! ...AH YEAH! UH-HUH! YOU DID IT! ...THAT'S RIGHT! ...UH-HUH! ...AH YEAH! 

"Mooooom! You are so embarrassing..."

"WOO HOO! ...AH YEAH! UH-HUH! YOU DID IT! ...THAT'S RIGHT! ...UH-HUH! ...AH YEAH!" 

By then he had his hand over his eyes, still shaking his head.  As he peaked up to see if I was finished, I did a few exaggerated cheerleading moves, yelling like we'd just won a state football championship..."WOO HOO! YOU DID IT!  GooooOOOO... JACE!" 

Then I saw them... his dimples. Still shaking his head in pretend disbelief at his crazy mother, Jace smiled the most genuine, happy smile I have ever seen.  I think there was part of him that wanted to do the "Running Man" himself... ha ha... but it's just not cool to dance with your mom in the kitchen when the bus is coming... I reached for him and hugged him tightly. I whispered in his ear, "You did it."

He smiled and nodded quietly. Then, humbly he reminded me, "Mom... I gotta go??"  Jace found his backpack, kissed my cheek, and RAN out the door.  I followed him, and watched him RUN across the driveway as a few tears fell down my cheeks. There was a time when I didn't know Jace would run again.  And look at us now... running AND dancing. 

Life sure has a way of teaching me to appreciate the little things. Jace told me the other day that he wants to do a youth triathlon next summer. He wants to run, bike, and swim... because he can.:)  I also think there's a chance I may continue to do the "Running Man" every chance I get... just so I don't forget; it really is pretty fun to dance.:)

Hey everyone...

We did it.

Jace finished chemo.

Join us Wednesday to celebrate? 

Email me if you have questions, or if you have pics of you celebrating with us from afar! We'd love to see them. 

mattnamyleigh@msn.com

Love you all.

Deep Breath

I feel like I've taken this deep breath in, and I don't dare let it out.

I've watched my own boys take a deep breath right before they do something difficult: as they step up to bat, right before they pitch, or as they make a big play...And as I watch them blow out again-- a quick, forceful, deliberate exhale, I feel their strength.  Their inner power comes to the surface and I can see them mentally prepare for what is to come. I even bet if you start watching for it, you'll see people in your own lives do this as they start something difficult.  It's a powerful thing-- that deep breath.

Monday Jace took a deep breath before his port was accessed for the last time.  Then, when it was clear   the blood was flowing through his port, Jace blew out a quick relieved exhale of relief. It was a small event, possibly even unnoticed by the crowd in the room, but I saw it...

When Matt, Jace, and I arrived at Teton Oncology Monday for Jace's LAST IV CHEMO treatment, he was greeted by a few constants: friends that have been with us the whole way. Thank you Kyler, Hayd,  Alisha, Kyle, Cory & Heidi. You started this journey with us three years ago, and we are so grateful that you are finishing it with us.  It was a nice, thoughtful surprise. You guys are awesome.  It was also so wonderful to have Becky and Leslie with us, our beloved nurses who have been with us the whole time. They decorated the room...brought Jace his favorite things. Of course Dr. Hancock oversaw everything. Where would we be without him? One of the receptionists commented, "It's quite a party today."

Yes it was.

Jace was diagnosed with Leukemia on September 11, 2009, and he received his last IV chemotherapy on Monday, November 5, 2012.

At the appointment we asked all of the appropriate housekeeping items such as:
"He can quit meds on the 16th right?"  Yes.
"Then we'll schedule to have his port removed?" Yes.
"Do his legs need therapy?" Yes.
"And bloodwork? When do we return?" Every four weeks.

A few more questions, and that was it.

Is it real? Are we really finishing a process that never seemed to end? When Matt and I asked Jace if he was excited to have his port removed, he answered: "I don't remember not having it."

As promised we are celebrating on November 21st. We will have a blood drive from 10-2 PM at Hibbard Elementary. Then, starting shortly after we get the blood drive cleaned up and gone (4 PM?), we will set tables up to make a few blankets and thank you cards to take to Primary Children's Hospital. Please join us for any part of this if you have time.

Starting at 5:30 PM we will prepare balloons for a final launch. Don't worry, we found 'glow-in-the-dark' balloons so we can launch after everyone gets off work. Plan on 6 or 6:30 for our "Up with Cancer" party. Like I said before, this will be in honor of Jace and any other cancer warrior you want to honor.

Kortney, Jace, and Keegan making sure the "Glow-in-the-dark" balloons work!

Of course Jace has been sick this week.  Although it seems like it should be over RIGHT NOW, he still has this last week to get through. It started Wednesday night, and he's still fighting nausea, sleepless nights, and body aches. He's sufficiently milked his "lasts" with his dad and me too. We've catered to every food craving... every whim... every need... teasing him that it's his last time to be spoiled.

I just found myself taking a deep breath again, but my exhale is always slow and weak. It lingers a little, like it's not real. Maybe watching a hundred balloons with Jace's name on them take off into the night will make this dream a reality...and we can all exhale relief.

Oh, and guess what... no more IV chemo.:)

Please join us at our celebration.

Love you all.

Quick Question

Is there anyone in Rexburg that wants to donate blood November 21^st ? I’m trying to get an estimate on the number of people I should plan on. If you are interested, can you leave a comment or email me your contact info? We need 25 people.

Jace was sick to his stomach from meds last night, and I was able to say the words… 15 more days sweetie… 15 more days…It made me cry a little actually. Um, yeah. I still haven't fixed that problem.:)

Jace receives his last IV Chemo treatment Monday, and he gets to officially stop taking medicine on the 16th of November. THIRTY-EIGHT months later...

We can do it!

Love you all.:)

Bitter...SWEET!!!

Monday we drove to Primary Children's Hospital for our last scheduled visit there.  Jace still has a November chemo in Rexburg, but we won't go to PCMC again.  Laura asked if our trip was bittersweet. After considering the question carefully, I replied, "Yes, but mostly SWEET." 

The minuscule sliver of bitter came in the form of seeing Jace's esteemed doctor for the last time. Dr. Barnette has been our hero at PCMC from the very beginning. The first time he walked into Jace's hospital room back in September 2009, Dr. Barnette's energy was palpable. He was absolutely the bright spot in our days there, and we will sincerely miss him.  

As Jace rang the symbolic bell on his way out of the oncology clinic door, Dr. Barnette urged him to ring it harder. “Oh… keep going!” he suggested… so Jace really let the bell sound.  We all cheered, and as I turned to tell the doc goodbye, he was gone.  It must be difficult to save a life, and then tell the kid goodbye, knowing you may never see him again. It doesn’t feel like it’s enough to say, but thank you, Dr. Barnette. We'll never forget you.

As I followed the boys out of the hospital with the camera, I felt my own real smile. We snapped a few photos, and said goodbye to a few favorite places…the fish…the horse…

Then, as I prepared my camera for a shot by the wishing ponds, I found myself passing a tired mom carrying a bald child. I knew with my trained eyes she was comforting her cancer babe…and their faces looked worn out and sad. I found myself thinking, that was us. Three years ago we were carrying our cancer babe… and look where we are now.  I wanted to tell her it gets easier, but I knew she was in good hands--  on her way to the 4^th floor.

I’ll readily admit I’m not very wise, but I’ve learned many lessons over the last three years. I look at Jace every day with SO much gratitude. I’m grateful for the blessing of being a mother to him and Hayden, and I’m grateful for the bittersweet opportunities to carry Jace. Yesterday I could tell his feet and legs were hurting. We were grabbing a few things at the store, and I offered for him to ride in the cart.  He looked at me dryly.  “Or I could carry you…” I coaxed. 

He just kept walking, shaking his head.  “Mothers…” he muttered. 

 We’re a little bitter, but mostly SWEET, right??:)

ONE more chemo treatment in Rexburg in November.

ONE.:)

We can do it.

Love you all.

Save the Date! and Applesauce

We've learned to be creative about giving meds to Jace. For the last 1,106  days, Jace has had AT LEAST two pills of chemo meds to swallow every single day. On his worst days though (Thursdays of Chemo weeks) he swallows 21 pills:  12 Methotrexate, 2 6MPs, and 7 Dexamethazone.  In the beginning at Primary Children's Hospital, they taught us to poke his daily pills into a spoonful of chocolate pudding. After his first year of this, he started getting a taste aversion to chocolate pudding. (I wonder why?? ha ha). Next it was yogurt, but then we learned that the 6MP wasn't suppose to be given with milk.  Oops...So, for the last year, we've used applesauce.

Today I bought the last applesauce we'll need.:)  I started figuring it out, and as I placed some applesauce in the cart, I went to reach for another one. Then I stopped. We won't need more. Right in the middle of Wal Mart I almost did my own happy dance. It sounds stupid, but for the first time, I smiled a genuine smile realizing that this chapter is really ending. Actually, is the book in it's final chapters? I think my students should recognize this as the falling action...:) (While I'm thinking about it, can anyone tell me how to print this blog into a hard copy book?)

THANK you for the great feedback about a celebration. With a combination of ideas, and many encouraging words...:), we ARE going to have an "Up with Cancer" party the evening before Thanksgiving.  Everyone is invited. Please, please save the date, and spend November 21 with us in Rexburg. (IF you'd like to help, email me or leave a comment. My mother-in-law, Joan, graciously agreed to be the Party Planner, so she will coordinate efforts.:)

A tentative agenda includes:

*A blood drive that day for those interested (Jace definitely used his share of donated blood, so it would be nice if we could give some back...)
*A service project (Or several? Any ideas?)
AND THEN...
*A balloon launching at sunset.... in honor of JACE, a sign of victory for other people who have won their fight against cancer, and a remembrance of those who have passed on.  (As we get closer, I'll post the details of location and time.)

AND

*If you can't come, we really, really, really want you to launch a balloon WHEREVER you are. Take pictures too and email them to us?

Jace has two more months of applesauce and chemo treatments: October and November. We will go to Primary Children's Hospital for the next one, and then we'll finish in Rexburg in November.  Shortly after his November treatment, we'll schedule the surgery to remove his port.:)  By November 21, he should be feeling better and ready to celebrate. Can you believe it? I'm kind of doing another happy dance right now...:)

When I asked Jace if it was ok if we celebrated, he shrugged his shoulders a little-- and smiled.
"You can invite anyone you want..." I coaxed.
"Ok," he replied thoughtfully... "Let's just invite EVERYONE actually," he added.
My eyes filled with tears.
Done.

See you there?
Oh, and  just for the record... we WON'T be serving applesauce.:)

"Ok, but I Won't..."

First Game Day 2012!

As I pulled Jace’s jersey over his football shoulder pads at 5 PM last night, I told him, “If you get dizzy during the game, just sit down-- or tell your coach, OK??”

He impatiently replied, “Ok, but I won’t.”

“You won’t get dizzy, or you won’t tell your coach?” I quickly tried to clarify…

But it was too late. He was running away from me onto the field to start warming up for his football game.

I haven’t let up on the steady campaign against football…J, but I’m still losing.  Jace is determined to play, though football has proven more difficult for him than baseball. Despite his chemo treatments yesterday morning, which included anesthesia, LP, chemo to the spinal fluid and brain, AND IV chemo in his port, Jace insisted on playing in his game last night.   He’s trying to earn a starting offensive position, and he knows that won’t happen if he stays home. He spent most of the afternoon on the toilet with a bowl in front of him, but when it was time to ‘suit up,’ he didn’t hesitate.  

Jace also made me promise I wouldn’t remind his coach that he had chemo that same day.  Jace knew he wouldn’t get enough playing time if I did. 

I’ll admit that when I watched Jace trot off the field after a victory, smiling big…sweating…giving the other boys high fives… I melted a bit. I don’t like football any more than I did, but it’s proving to be another challenge that is NOT getting in the way of our Iron Man.  Isn't it interesting how sometimes our kids teach us the most valuable lessons?  This week Jace is teaching me that complaining doesn't help, we are stronger than we think we are, and when things are difficult, we just need to endure. Thank you all for sending such reassuring comments and thoughts. I'm so grateful for the feedback we get from this blog. 

This morning out of the shower Jace was dizzy and tired. He rested on my bed while I rubbed his feet and legs. I reminded him how close he is to finishing chemo. He smiled a weak, pale smile that said, thank goodness. Then he got ready for school, found his backpack and headed out.  I called after him, “If you get sick, call me?...”

He replied, “Ok, …but I won’t.”

8 AM After LP

7 PM  After Game