What Cancer Cannot Do

My sister gave me a necklace for Christmas which says:

What Cancer Cannot Do…
It Cannot…
Invade the Soul
Destroy Peace
Conquer the Spirit
Shatter Hope
Cripple Love
Corrode Faith
Steal Eternal Life
Silence Courage

I’m wearing the necklace tonight for reassurance, and I keep touching and looking at the list-- hoping it is true. After an incredible, green flag week, and a wonderful family party on Christmas Eve, the boys enjoyed a tender morning full of fun gifts and surprises. Jace even bathed and dressed in his new t-shirt and warm-ups and anxiously awaited our departure for another family get-together. But on our way out the door, he found himself weaker than usual, and asked me to "get dad" to carry him. Out of habit, I felt his forehead. NOOOO way. He was hot. Christmas morning… gifts already loaded…vehicle running and waiting for us… I grabbed the thermometer: 101.6 degrees. Oh man.

Amy: “Um, Matt. Jace has a fever.”
Matt: “No way.”
Hayden: “Is that bad?”
Jace (in tears): “Can we still go to the party?”

We gathered Jace in our arms, tried kissing away his tears, and took his temperature again and again. 102 degrees… 102.9… 103.0… (Soooo NOT good for a cancer patient). Hayden sat down on the couch knowing the day had just drastically taken a curve ball…and after calling the doctor, the four of us drove straight to the Emergency Room. A caring staff greeted us, tended to our every need, and we spent the day wondering why our little boy had a fever. The strep test was negative…and the chest x-ray looked clear- so we’ll have to see tomorrow or the next day what the blood work says. They filled Jace’s little body full of fluids and antibiotics, and we came home at 4 PM. After the party came to us tonight (Thanks family. We love you!), Jace maintained a low-grade fever, bathed twice, threw up once, and fell asleep on his daddy’s chest. Hayden was a good brother the entire day, and didn’t complain once about the change of plans.

Cancer CAN change some things. Cancer can make a family spend Christmas day in the hospital…and cancer CAN turn a turkey dinner into a bag of Doritos and a Fountain drink, but it definitely CANNOT Conquer the Spirit or Silence Courage. Every time I start doubting these facts, I just have to look at my kids- the bravest people I know. Merry Christmas everyone. We love you.

The PRO

Jace sported a hospital gown this morning by 6:30 AM. These procedures are so much a routine now, that he’s a PRO. (I’m not sure I love that he’s a pro at being a cancer patient…not every mother’s dream…) Anyway, he was only a little nervous this time, and when he knew he would meet Dr. Hancock in the procedure room, his fears were relieved. He was under anesthesia by 7, receiving a Lumbar Puncture by 7:30, and leaving the hospital by 9 AM. On our way home he had another appointment at Dr. Hancock’s office to receive more but different meds, and we were home by noon. I found it interesting that I was exhausted after we returned home, and I wasn’t receiving toxic material into every vein of my body. I’m such a wimp, and Jace is so strong. Right now he’s NOT sick to his stomach, and he’s happy and hungry. Yay. These conditions after what should have been a brutal day remind me that every prayer and positive thought sent his way is playing a role in his optimistic treatment. We are so thankful for all of your prayers.

I’m not sure what the next few days will bring, but we are hopeful that Jace will have a pretty normal holiday—and this year our hearts are much different as we reflect the true meaning of Christmas. This year more than ever, we have felt the pure love of Christ in our lives through the goodness in so many of you, and we are grateful for every part played in this cancer journey. PEG shots on Tuesday…and nothing else until the 27th. Three months down. We can do it.

Changing Colors

Last night Matt asked me when I was going to write another post for the blog. He mentioned receiving a text that asked if everything was ok, because it’s been a week since I wrote. My response was, “I haven’t known what to write, and I’ve been waiting until I could have a more stable attitude.”

He lovingly replied, “Honey, I think you should post before the year 2011.”

Many of you have been asking my family and friends if, “Amy is ok?” As for my mental stability, the verdict is still out on that one. I did clean out my classroom, and I won’t return to work this school year. Jace affectionately told me he was sorry I couldn’t teach anymore. I responded that I don’t want to be anywhere else but at home with him. I did discover 11 (yes I’ve counted) grey hairs on my head this week, and my extended family just laughs at my shock. They giggle and tell me I’ve earned them.

Speaking of hair color, our now, red-headed Jace has actually had an amazing weekend. His hair is growing in a completely different color than before, and in addition to being very thin and weird, it has quite a bit of red in it. He received a chemotherapy treatment Monday, December 7th, and his worst sick day was Wednesday. Since then he has improved daily, and his numbers have allowed for visitors and a few outings. He actually made his first trip to gift shop yesterday, and he had fun buying a gift for Hayden. Both boys were thrilled after buying for each other, and they feel more prepared to give a little for Christmas this year. The Madison County and Rexburg Sheriff’s Departments also brought Jace and Hayden some wonderful gifts, and again we are humbled by the giving spirit of those around us.

This Thursday, December 17th, Jace will go to the hospital to receive a Lumbar Puncture (chemo in his spinal fluid). He will also receive Vincristine and Methotrexate in his port. We are not looking forward to the repercussions from this, knowing his numbers will drop again, and he will be a pretty sick little boy. Jace will also receive PEG shots on the 22nd of December. We are praying his body will recover quickly from these treatments, and he will be able to enjoy the Christmas weekend. Yesterday while Jace and I waited in the pick-up for Hayden and Matt to unload something at Leathams’ house, Jace asked me if he could surprise Grandma and Grandpa by shoveling the snow out of their driveway. I conceded, and Jace pulled his hood up over his head and found the shovel. I was touched that although he has the best excuse to quit serving others, he found a way to reach out and set a good example.

So, although I joke about my mental stability, I really am ok-- because Jace is hanging tough. He’s full of spunk, and he continues to fight through these crazy color changes. He doesn’t even mind his new red hair…so I’m thinking I shouldn’t complain about the silver strands I’m finding in mine. Jace thinks with red hair, he looks more like Hayden anyway…and there’s nothing wrong with wanting to be like his big brother.

(Jace has learned that eating a sucker during some treatments helps to relieve the taste in his mouth)

(Those of you who know Matt's a Cowboys fan...

notice which hat Jace chose to take into the doctor's office in case he became sick...

Matt didn't think it was funny.)

Saved

After five days of complete isolation, Jace received some outdoor visitors. If you were worrying about the sirens and flashing red lights at our house last night, rest assured. Jace just had company: Rexburg-Madison County Emergency Services again—and Santa.
They showed up in glory with their big yellow fire truck and ambulance…and several geared fire fighters. Santa actually rode the ladder as they extended it to the house, and the boys were awestruck. In addition to an amazing showing, they also arrived bringing gifts. Jace is now the proud owner of an authentic firefighter's helmet, and Hayden received a firefighter's Monopoly game. The smile this brought both boys was priceless. Matt and I again felt unworthy of such attention and grateful for a group of good people taking care of our sons. After a week of looking at the same three faces, Jace was saved from the monotony of being sick. For a few minutes Jace was on top of the world, enjoying the show. Thanks again Rexburg-Madison County Emergency Services.

In addition to our company last night, we also received a magnificent package tonight. The cutest group of teenagers and their parents brought our boys gifts to remember including personal letters and gift cards; movies and books.  Really--we have no idea how we will ever repay all of you who are supporting our family. Please accept our heartfelt thank you, and please know you are making a difference. No matter what you are doing...anonymous letters...pizza on the front step...dinner...ice cream...etc...With your love, we continue to feel "saved" over and over again.

Hayden's Hat and Prayer

After a rough Thanksgiving week, Jace had a pretty good Friday morning. Instead of going with Matt and Hayden to Hayd’s out of state basketball tourney, Jace and I chose to entertain ourselves at home. By Friday night Jace was stir crazy and decided he needed a road trip. We made it to Rigby.:) (If you don’t know, that’s about 15 miles from our home.) After playing for a while with his cousins, Jace started feeling yucky- so we made preparations to go home. His emotions got the best of him, and Eli held him for an hour trying to ease his crying. Finally we were on our way, with Dayton and his over-night bag. But even driving home, Jace couldn’t stop crying—sobbing actually. I finally suggested, “Let’s say a prayer.” I was driving, so I asked 6 year old Dayton if he would say it. His prayer was simple and beautiful. He asked three things. “Please help Jace to stop crying. Please bless Jace to feel better. Please bless Jace to be ok.”

We all said “Amen” and not 30 seconds later Jace was very sick and frantically searching for his bowl. In its absence we grabbed the next best thing: Hayden’s ski hat. Sparing you the details, I’ll just say, Hayden needs a new hat, but Jace immediately felt better and was able to come home and go right to sleep. Dayton wondered if his prayer had actually been answered, because Jace threw up, but I explained to him that it was exactly what Jace needed to “feel better.” He said, “I thought maybe the devil and Heavenly Father were fighting, but I knew Heavenly Father would win.” I was amazed at the faith of another young child with complete faith in a loving Heavenly Father who hears and answers prayers.

Jace was brave once again yesterday as he received his PEG shots. We learned his HCT actually came up to 24.3, so he didn’t need a blood transfusion (he’s still on the edge, but the improvement says maybe his body is taking care of it). The BAD news is that his ANC (or the number that tells us how immuno-compromised he is) is down to a .2! This means he cannot be in public at all, and he cannot receive visitors in our home. I’ll keep you posted when this changes.

Jace is still carrying a bowl around, and luckily Hayden wasn’t too sad about his ruined hat. I’ve been scrubbing it, but I’m not sure it will ever be worn again. Hayden knows it’s a small price to pay. He watches Jace be so sick, and he just shakes his head. He asked me last night about Jace’s counts. I told him, and he said, “That’s bad hu?” This morning, Hayden came straight to Jace still in bed, laid next to him, and wrapped his arms around him. His terms of endearment went something like this:

“Morning Bud. I heard how brave you were yesterday. I would have cried if I would have had those shots. Wanna play the Wii before I go to school??” And so they did. Hayden wrapped Jace in a blanket and carried him to the couch. They sat with arms touching and played together. As Hayden said the family prayer this morning, he specifically thanked Heavenly Father for “my brother Jace.” So, after a rough week, this morning I’m grateful again for prayers, with the odd addition of a well used ski hat.

All Things Thankful

Last night at midnight, I couldn’t sleep, so I sat down and wrote a whiney, negative post about how awful Jace’s chemo day was. Luckily I had the frame of mind to NOT post it and wait until morning to proof it. This morning after a good night’s sleep, I’m not tiptoeing around the edge of bitter…so… instead of dwelling on the reality of Jace constantly holding a bowl in front of his face, with Jace’s help I will create his list of “All Things Thankful.”

Before I get to that I will say Jace did have an awful day yesterday. He went into his treatment nauseated, and he left even worse. When we finally arrived home he was so sick, Matt and I took turns holding him, and he finally cried himself to sleep. His numbers are low again, and he almost needs another blood transfusion. Hopefully his body will take care of this over the weekend. We will return Monday to see how things are going, and he will get two more PEG shots.

Last night Matt, Hayden, and I were able to surround Jace and help him try to get his mind off his sick stomach. After a long bath, Jace crawled into our arms and fell asleep with the four of us cuddled around him on one couch. I hate that Jace is sick, but I am grateful for so many things that aren’t actually worse. I won’t share my own list because I know the real reason you read this…but I just took the laptop to Jace as he rested in Matt’s arms in our bed. I coaxed, “Jace, tell me the things you’d put on your thankful list…”

This is what he said:
Mom and Dad
Hayden
Families
Our house
Beds
Prayers
TV
Bathrooms
Baths
Food (not sure why he said this, since he’s not really eating)
Books
Dr. Hancock
Leslie (our nurse yesterday)
and
Super Mario Brothers

It’s all pretty amazing when you think about the very real blessings of a family, a warm home, and a comfortable bed. This morning I’m not whining or complaining, because we have so much for which to be Thankful. This morning we have Jace (and Hayden), and until this year I have NEVER been more grateful for them.

So, Happy Thanksgiving dear friends. We love you and appreciate your continued prayers and support. Thank YOU for taking this journey with our little family. We pray that today you will also have a warm, “Thankful” day.

Finally! A New Post

I know you want an update, and you were relieved to see a title other than “My Tummy Hurts” at the top of the page. Yesterday at least five people asked me when I was going to “post” again, and I felt guilty last night for not keeping current. One person even asked, “Are you going to stop doing the blog?” The answer to that is no. I won’t stop doing the blog. I will continue to post as long as it takes to get Jace completely through Cancer and Chemo. Mostly for selfish reasons, I want a record of the whole journey, and I’m sharing it with the public, so we can continue to receive prayers. The problem is that not much has changed since I posted last. Jace’s tummy still hurts—especially in the mornings, though he’s been feeling progressively better every day since treatment.

Monday we did receive permission to let Jace go in public a little more. As long as his ANC is above 1,000 or (1.) he should be better equipped to fight infection, and this week he is 1.14. Jace is especially glad to be able to get out of the house, and he even talked Hayden and me into going to a movie on Thursday afternoon. We went to the 4 PM showing of A Christmas Carol, and it was intense. Even though he probably didn’t need to, Jace wore his mask until we reached our seats, and I took my hospital strength disinfectant and sprayed our chairs and armrests (yes, the boys were embarrassed by their obsessive mom). It turned out wonderfully though, because we were the only three people in the theater, and I didn’t worry the whole time about someone coughing on us. Although we bought Jace his own child’s pack popcorn and drink, we had to dump the popcorn out, and he held the box in front of his face for the better part of the movie because he thought he would be sick. Despite the changes our movie attending days have taken, it was good to get out of the house.

Last night we also went to our friends’ house. Jace started on the toilet with a bowl in front of him, and ended  on the couch—pale and worn out, but during the three hours in between--  he was running around like a madman. He and his cute friends played Uno, Foosball, Volleyball, and “torment the adults.” It made me realize that although Jace has bad minutes, right now he has way more good minutes…which turn into hours…that take us closer to that beautiful day in the future when Jace is completely well. Tonight I'm grateful for good minutes. Two months and eleven days down…we can do it.

"My Tummy Hurts"

It’s the theme of the day. It started last night, and it hasn’t stopped yet. Usually when Jace’s tummy hurts, he likes to bath. Last night I read 10 books to him while he relaxed in the tub. This morning he has bathed twice already, and I’ve warmed numerous ‘rice babies’ to rest on his aching body. Hopefully we can find another magical remedy soon—like the ones we keep stumbling upon that relieve his stomachache and help him relax. Anyone have any suggestions? Many of you have commented on the size of his cheeks “going down.” FYI: Jace weighed 56 lbs. on September 11 when he was diagnosed with Leukemia. He gained 13 lbs. the first month while he was on steroids-- to take him to 69 lbs. Now he is back down to 60 lbs.

We did go to Primary Children’s Hospital Monday for Jace to receive treatment, and it went smoothly. We were even home in time for Hayden’s basketball game that night. Jace decided he’s not scared to go to the doctor or hospital anymore; he’s just annoyed. He told me, “The only good things about the hospital are the XBox and Dr. Barnette.” Matt and I also appreciate the energy Jace’s doctor at Primary’s has. He is optimistic and fun for Jace, and he knows his stuff. I, on the other hand, keep thinking I know what’s coming but was surprised to learn that in addition to his “every ten day treatments,” Jace will have a few PEG shots and Lumbar Punctures thrown in there. Just when I think I understand what is in store for us, I find I’m wrong.

Although Jace held a bag in front of him for the first hour driving home from Salt Lake, he was able to fall asleep and the rest of his ride was peaceful. The silver lining for us today is that Jace IS home. We aren’t in a hospital. Jace is able to relax on his own comfy couch…and when his “tummy really hurts” we get to hold him.

(waiting for chemotherapy)

(being accessed and having blood drawn)

Count Dependent

Our third cycle of chemotherapy starts Monday at Primary Children’s Hospital. The next 42 days are “Count Dependent.” This means tomorrow Jace will have blood drawn, and his numbers will be checked. If they are high enough for him to withstand treatment—we will proceed to Salt Lake Monday morning, and Jace will be given Vincristine, a chemotherapy drug. This process will repeat every 10 days. If Jace’s numbers are not high enough, he will wait three days and have his blood checked again. Originally I thought this treatment would last one month, but unfortunately, I misunderstood, and this difficult cycle will actually last (best case scenario) until December 28th.

On the up side, Jace has had a fantastic couple of days. He actually ate breakfast two days in a row, and he has played with his brother and friends like he wasn’t sick. We ventured out last night, and Jace (wearing his mask) actually felt well enough to go into Cold Stone Ice Cream to pick his own treat. Mom even said after visiting him Friday night that she saw “our old spunky Jace” again. He was trying to wrestle his brother, box his cousins, and he even asked permission to slide down the stairs on a pillow. I reminded him that we NEVER allow him to do that, and smiling he put his hands out and replied, “Oh, come on!” Today he has playfully followed Hayden, Kyler and Alisha around wanting to play basketball and just "hang out."

He’s READY to start another cycle-- so that he can finish it—and Matt and I are nervous for what the new treatment will bring. The other day in a moment of sadness I said to Matt, “I wish we could just go back to July—when Jace was swinging off the rope at Pack Saddle Lake, and riding the horse into Moody. I wish so much we could go back.”

He gently reminded me that if we went back, we’d have to do it all over again—and as you ALL can attest, we’ve made quite a bit of progress so far, so we probably shouldn’t start over. I just told Jace I needed to take a picture of him having fun to put on the blog, so everyone would know how he is feeling this week, and he replied, “Take one of Hayden and Kyler. I reeeally don’t want to be in it, K?”

Dimples

Yesterday Jace and I had a tender morning as he awoke and I climbed back into bed with him. He wondered why he felt so “crumby,” and we talked about the shots he received Monday. Our conversation drifted to how strong he is, and that if he decides in his mind that he is strong, he can be a good example to others. He asked me to retell his favorite story about when he was born. I try to tell the boys once a year (usually on their birthdays) about their birth, and how the events unfolded. Jace’s favorite part of HIS story is when I get to the first time I looked at him. I tell him, “I knew the minute I laid eyes on you, that you were incredible.”
He asks, “How did you know?”
I reply, “I knew in my heart.”
But yesterday I added one more part of how “I knew.” I added that I saw his dimples. It is the truth too. For some reason, I remember vividly that when I saw my newborn Jace’s dimples, I felt a flutter in my heart of pure love. I’ve since learned that dimples are actually a weak muscle in the face. Yesterday I thought of this knowledge, and I compared the weak muscle to his cancer. Although for some INSANE reason Jace’s body developed cancer, this weakness can turn into one of the strongest things he will ever defeat. I’m hoping someday I will look back and help him remember that weak things turned beautiful can be our most admired characteristics.

Today, I am waiting for his dimples to emerge. He’s sleeping peacefully now, and the prayer in my heart is that he can sleep as long as possible to lessen his “sick time” during another day- and when he awakes, I will probably climb into bed with him and tell him again how strong he is. He will also smile that cute smile, and his dimples will melt my heart all over again. Thank goodness for weak muscles.

All in the Attitude

Hayden can’t wait for it to really snow, so he can go ‘boarding.’ Last year, Jace also learned to love the sport, and as a 6 year old, he was pretty good! This year Jace has been given quite a few restrictions: no trampoline, no bike, no four-wheeler, and of course—no snowboarding. So, as Hayden started pulling out his snowboarding “stuff” tonight, Jace found his snowboard, boots, and helmet. We had a gentle talk about the fact that he won’t be visiting any ski hills this year, and he said, “I know.” I was expecting a fight, but he didn’t give me one. His mature understanding of his current situation amazes me, and I find myself admiring him now as he straps his boots into his board, and scoots around the house anyway.
This week has been awesome. Jace awakes every day with a sick stomach, but he is distracted quite easily as he is always looking for something to do. Tomorrow he will receive PEG shots into his legs, but that is all. He is still taking his oral chemo meds daily, and after this week’s treatment, we will be starting Cycle #3! Can you all believe we have two months behind us? We aren't sure what this 3rd month of treatment will bring, but we have been informed that every other month will be difficult:  the 1st, 3rd, and 5th months of treatment being the hardest on Jace. Luckily Christmas and New Years will be in the middle of the 4th month.

Jace just said to me, “Mom, we really should give my snowboarding boots to Dayton (his cousin), so they won’t be wasted this year.” It really is all in the attitude isn’t it?

New Normal

A very wise friend asked me last night if things were back to normal at my house. Then he rephrased by saying, “I mean new normal.” It struck me as just the right phrase to explain this week. I also really appreciated that he understood the concept of “old normal” compared with “new normal.” Our "new normal" is exactly how this week has been- and maybe even a little better. Jace received his Lumbar Puncture Monday, and he did awesome. He probably handled it this time the best yet. Matt and I barely have to hold his hand when they access him now, and by routine, he is one step ahead of the nurses. Just before they will pick up the blood pressure cup to put on his arm, he holds it out. Just when they are thinking about putting the heart monitor on him, he puts his finger out for them. He is a pro. We’ve also learned he cannot have the gas when they are putting him under anesthesia. He really prefers having them roll him back to surgery wide awake, and then putting him to sleep through his port access. This allows him to awake much easier and less sick.

Our doctor is also so smart to help us know that maybe Jace’s sick stomach is just heartburn. We have started Zantac again by routine, and it is helping tremendously. Jace has had an almost normal appetite since Monday, and he is much happier about this. Actually, we are all happier. There is that old saying about “If mom isn’t happy- then nobody is happy.” Well, at our house, it is Jace. When Jace is sick, it is hard for all of us to handle because it makes us so sad. But we haven’t had cause to be sad this week. We are close to having our old Jace back, and it is beautiful. Jace will finish his second cycle of chemotherapy next week with Peg shots into the muscles of his legs. We will be able to stay in Rexburg for this, and Jace is thrilled about not having to drive or fast (no anesthesia).
So today is another “new normal” day. We did homework for a few hours already this morning, and we are going to try a little walk in a while. Thank you all for your continued prayers. We feel them every minute. I guess it’s true that life has to change a bit for an individual to grow. Well, ours is nowhere close to the life we knew just two months ago- and we are growing in ways I never wanted to grow. But our “new normal” is precious and tender, and I’m so grateful for the testimony I have in a loving God who strengthens our family and makes it possible for us to survive this crazy new norm.

Boo! I Scare Cancer

At 4:30 PM on Halloween we talked Jace into at least going to his Great-Grandma Grover’s house to trick-or-treat. He wouldn’t wear the costume we had planned, but he did put on his new favorite shirt that reads: Boo! I Scare Cancer. I thought it was just great for Halloween this year.

On our way home from Grandma’s, Jace saw the signs for a Straw Maze. Apparently getting out of the house gave him a little new found strength, and he talked us into trying it. The fresh air outside, and virtually no crowd made it possible for Jace to move around and be free. He led Matt, Alisha, and I through the straw walls and giggled most of the way. He did finish the course on Matt’s shoulders, mostly because we took every wrong turn we could take- but it was a blast for all of us. We started our movie marathon when we returned home.

Jace returns to Madison Memorial Hospital tomorrow morning (Monday) for another Lumbar Puncture. It seems like we were just there. As a review, a Lumbar Puncture is when Jace receives general anesthesia to have a chemo treatment into his spinal fluid. He continues to take oral chemo every day, and he is now regularly taking the anti-nausea medicine which sometimes works. Jace also still has hair. His buzzed hairdo is slow at growing and it is baby soft, but he has evidence of hair everywhere on his head. He also still has his eyebrows and eyelashes.

With or without hair, Jace is darling- even when he’s grumpy. A few minutes ago he was lamenting the idea of going to the hospital in the morning. He said to Hayden, “No fair. You get to go to school. You are so lucky.” I thought in my mind of all of the mornings we have ALL complained about going to school— thank you Jace, for another lesson learned. We all responded to Jace by reminding him that he was tougher than us. He might actually be equal to Matt and Hayden; I think they DO scare cancer-- but the truth is-- cancer still scares me.

Angels

An angel of prayer sits next to my laptop here on the counter, and another angel is in my pocket. Both came from friends- angels themselves- and both help me refocus and remember that I’m surrounded by love. In the hospital we also received a quote in a frame that is from D&C 84:88: “I will be on your right hand, and on your left, and my Spirit shall be in your hearts, and mine ANGELS round about you, to bear you up.”

Some of you (very few maybe) know I collect angel figurines. They come in all shapes and sizes, and they are a fun assortment of mine, though I don’t have many. While we were in the hospital I also received a beautiful quote from a friend by Elder Jeffrey Holland. It says:
“Not all angels are from the other side of the veil. Some of them we walk with and talk with—here, now, every day. Some of them reside in our own neighborhoods. Some of them gave birth to us. Indeed, heaven never seems closer than when we see the love of God manifested in the kindness and devotion of people so good and so pure that angelic is the only word that comes to mind.”
It is interesting to me that the very things I love to collect are so important to me now. I’ve always believed in angels on the other side watching over us, and now every time we turn around we find angels among us on earth.
Jace is sick to his stomach this week. He awakes ill in the night, and he is barely eating anything. His first bite of food today was French toast at 12 noon- and even then it was one bite. I talked him into a cheese stick, and he did eat a few small pretzels. In the late afternoons and evenings he has been perking up a bit and playing around the house and outside. He’s starting to go stir crazy I think. I’m not sure how he feels about Halloween—everyone is feeling so sad for him that maybe he won’t have a “normal” Halloween, but he doesn’t feel “normal” so I don’t think he cares. He feels mostly sick.

But even Jace is noticing the angels among us. His favorite prize lately is the two pumpkins carved by angel neighbors with “Hayden” and “Iron Man Jace” engravings. We are going to count on Hayden to Trick-or-Treat for Jace, and we think for Halloween we are going to take it easy and have a Scooby movie marathon. We’ll see if Jace feels like putting a costume on. If not, we’ll still have a Halloween never to be forgotten.  We appreciate all of you angels out there, and we feel the strength of your prayers in our lives. If you have been involved in the angelic acts we are feeling, thank you. We love you.

Hayden Speaks

Hi, this is Hayden. Was’ up? My mom has been pretty busy lately taking care of Jace, so she asked me to do a post to say hi to everyone.
It is a little weird having a brother with cancer. It was hard to get used to the idea that my brother was sick. It happened so fast that I felt like it wasn’t real- but unfortunately, it is. Anyway, I just wanted to say hi to everybody—and give a shout out to my friends and family. Thanks for taking care of me. Love you alllllll.

Hayden

Consolidation Day 8: Lumbar Puncture

Jace received his Lumbar Puncture at Madison Memorial today, and it was beautiful not to have to drive to Salt Lake. We love Primary Children's Hospital, but we also love our local doctor and hospital- so today we were blessed to be able to stay here.

Jace was pretty mellow going into the procedure, and we learned it was because his numbers are a bit lower than last week. He's ok though. About the day he said, "That was no fun. It wasn't fun being put to sleep. It wasn't fun feeling weird, and it wasn't VERY fun waking up." That's the extent of his complaining. He's also been sick to his stomach all day, but he doesn’t complain about that. He just doesn’t eat much. Ice chips have been the food of the day.
It amazes me how much he endures and acts like it’s every day stuff. The lesson I’ve learned from our Iron Man today is the art of not complaining. So far today, he hasn’t spiked a fever either. Thank you all for your continued prayers. We are hearing stories of how Jace has started to be a routine name in family prayers in many homes of our friends, family, and blog readers.:) Thank you. We feel the strength of your prayers, and we appreciate your love.

When the nurse asked Jace if he wanted a wheelchair to leave, he declined and said, "I can walk today."

Part Two: Dancing in the Rain

I didn’t know when I wrote that last post that it was going to literally rain and rain the same night. Ironically it was also the ONE night we had plans to be outside in the next 3 1/2 years.

Apparently a few amazing friends at Qwest noticed Jace wearing a Seahawks jersey in one of his hospital visits. The ball started rolling, and before we knew it, Doug Swanson, the Grid Kid Football Director from Idaho Falls called and said they would like to present Jace with an autographed jersey from the Seahawks quarterback himself...Matt Hasselbeck!

Because Skyline was coming to Madison last night they decided to bring it to the high school football game half-time. Not only did they bring it, they graciously asked if our own Grid Kid and Flag Football kids would make the presentation—“Because it would mean more.”

You should have seen how excited Jace was to be at the game in the pouring rain. We bundled him in layers, parked the pick-up early on the front row so we could watch until half, and tried to keep him in it until the buzzer sounded for half-time to start. We didn't quite make it that long, and as he walked up to the fence surrounding the football field, he was thrilled to be back in healthy boy's land. Of course Matt and I stood over him with umbrellas, but the excitement in the air from the game was contagious, and Jace wore a genuine happy smile.

Walking from the south, we met at the 50 yard line-- 100 little boys from ages 6 to 12 walking from the north, and Jace received his framed, autographed jersey. The most incredible thing then happened as we walked off the field. As we turned to go, many of the boys walked back WITH us and threw positive, encouraging words to Jace on his journey to the end zone.

“You are awesome, Jace!”
“Jace, you are so tough!”
“I can’t believe you made it tonight!”
“Jace, you are my hero!”

It cemented in my mind the concept that all kids are heroes, and for Jace nothing could have been more powerful than that group of peers shouting those encouraging words for him.
My only regret for the evening was that I didn’t turn to the Skyline crowd and wave—and I didn’t turn to the Madison crowd and wave—a gesture of genuine thanks. I think I heard the announcer say something on the microphone like, “Sometimes communities come together for a common good.” We felt supported by Madison and Skyline fans alike, and were shocked to find that in addition to the Madison fans, the Skyline fans also collected cash at the game for our family. Not only will Jace cherish the jersey, he will have one more experience to put in his armor to fight for good.

Thank you Doug, Shane, Kerr, Matt Hasselbeck, Boys, and everyone involved for making our dance in the rain an event we will never forget.

Dancing in the Rain

Recently, a friend gave me this quote painted on a beautiful home decoration:

“Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.”

It makes a lot of sense when I think about it, because if I just wait for this storm to pass without appreciating the little things that are making the experience so tender, I would miss many precious moments with my Jace.

Lately I’ve been “dancing” by helping Jace bathe. I’ve often grieved that he was my last baby, but I’m getting the chance all over again to rub his scalp (and peach fuzz hair) with sweet smelling shampoo and conditioner. It is a humbling experience to help my 7 year old out of the tub, and to dry his weak body with an over-sized bath towel, but I am cherishing these minutes and hours where time is not important- and we can spend as much of it as we want.

Lately I’ve been “dancing” by rubbing Jace’s feet, legs and back with lotion. It “feels good” to him, and as his mom, this is one way I know I can help make him feel better. In the PCMC ER one nurse came into the room and said, “It smells like a spa in here.” It was because I was rubbing Jace’s feet with Stress Relief lotion- his new favorite.

Lately I’ve been “dancing” by learning every word to many of Jace’s favorite songs. Sometimes when he’s getting accessed (or punctured…with a needle), we will look into each other’s eyes (so he can’t see the needle) and sing. Our song this week has been: “1,2,3,4” by Plain White T’s. He loves this song, and we are driving Matt almost crazy by playing it over and over again any time we are in the vehicle. Jace quickly learned every word, and he sings it even when it’s not playing somewhere.

Lately I’ve been “dancing” by watching so many hearts turn soft over Jace. For some reason this amazing little boy has impacted many lives right now and helped us all be a little more loving and giving.
I’ve always loved dancing, though I was never that good. Jace still giggles at my attempts at the “Running Man” and other dance moves- but it IS way more fun to dance than to cry. So, here’s to another day down…and dancing in the rain.

Roller Coaster

Jace’s birthday was a great day. He felt well, and when daddy returned home from work we took Jace and Hayden on a short drive to the mountains (one of their favorite places). The mud was so thick, we all screamed with laughter as it splattered our windows and bounced us around in our seats. It was just what Jace needed to help him remember how fun life can be. Later in the evening, a few close family members brought gifts and sang to the birthday boy. Our beautiful cake was delicious (baked and decorated especially for Jace by a friend), and we had a wonderful evening.

Little did we know how quickly our roller coaster ride would drop. We thought Jace’s chemo treatments Tuesday at Primary Children’s Hospital would be intense, and they were. We left home at 5 AM, and arrived in SLC in time for his appointment at 9:30. Jace had to go to the hospital fasting because of later procedures, so his last meal was the night before. On the way to the hospital we also apply Emla cream to Jace’s port to help it become numb for access. This means, as soon as we get to the hospital, a nurse places a needle into his port, and it remains there for the rest of the day. Instead of through a typical IV most meds can be administered into the port. After a thorough check-up and blood draw, Jace was sent to the RTU for his Lumbar Puncture (spinal chemo treatment). Jace was put to sleep through this procedure, so we waited in a hospital room while he endured the ordeal. This week Jace also had to receive PEG shots into the muscles of both legs. After all of this, Jace also received Vincristine in his port, a final chemo drug. Would you believe that during all of this Jace didn’t shed one tear? At the end, he was just relieved and ready to go home as he ate his Mac n’ Cheese outside the hospital on one of the benches.

As we drove north though, Jace complained of a headache, and he felt warm to the touch. We didn’t have a thermometer, so at Centerville we pulled off the interstate and ran into Target to purchase a thermometer and some Tylenol. While we were pulling away, I quickly gave Jace the thermometer and his temperature read 102.7! NOT GOOD. I quickly gave it to him again. 103! In the past we have been instructed that if Jace’s temp was 101.3 or higher, we were to quickly call specific numbers for assistance. We called from the parking lot of Target, and they said to immediately check him into the closest ER. Well, we didn’t know where another ER was, so we drove south again and straight to Primary Children’s Hospital. By the time we arrived, Jace was pretty sick. They quickly accessed Jace’s port again, and started fluids and an antiobiotic. They also gave him Tylenol, and drew blood to check for infection. His fever didn’t break for two more hours. By then it was 8 PM. At this point Jace felt much better, but the ER doctor called for a bed on the cancer floor for him. After counseling with the ER doc, the on-call Oncologist, and Dr. Hancock in Rexburg, they actually gave us a choice to stay in the hospital over-night to wait for blood results, or come home to be treated in Rexburg. We let Jace choose- and of course he opted for going home. This meant no tubes over night- no access to port (roughly translated as no needle sticking out of him for the next 24 hours), and his own bed.

He was a sick boy going back to the ER, but he bravely walked out of it at 9 PM singing and smiling. It reminded me of the lyrics to an old song, “I get knocked down, but I get up again, You’re never gonna keep me down…” At home when we pulled his clothes off him at 1 AM to put on some PJs, we found four band-aids (on port, on both legs, and on back), and the remnants of sticky tape everywhere on his body. He had been poked and prodded, put to sleep, and revived, been x-rayed and examined- and he bravely endured a grueling 20 hours.

I've never really loved roller coasters when I'm on my way down, but luckily the rise makes up for the fall. This morning Jace has a low-grade fever, and he will be returning to Teton Oncology at 3 PM to have his port accessed again for more antibiotics. He is sitting next to me helping me write this, and when I started typing those lyrics, my eyes filled with tears. He said, “Oh MY, mom. You’re ok! Don’t cry!” He reached to wipe away my tears, and I explained to him why I was so moved. I told him that he is amazing, and that I couldn’t believe how strong he was yesterday. Just like he'd been on a wild ride at Lagoon, he shrugged his shoulders and replied, “It was no big deal.”

Birthday Eve

Who said MLB pitchers don’t just show up at your front door? Not only did Matt Lindstrom spend some time in our home tonight, he visited with Jace and Hayden about pitching, and told Jace he’d call him later in the week to see how he’s doing. It was like Christmas for both boys. Long after Matt and his siblings-- Rob and Marci-- left, Jace turned the signed baseball he’d received over and over in his hands. “I might take this to the hospital to show my doctor,” Jace told me. He was pretty impressed.

Not only did Jace get to visit with his favorite baseball player, he also finally received the chance to shave Grandpa Randal’s head-- another dream come true. Jace proved to be pretty skilled with the clippers, and he started cutting right down the middle. It was a perfect birthday eve.

Giggles

Jace started giggling yesterday, and he couldn’t stop. We all looked at each other in disbelief. Was it possible our old Jace broke free for a few days from this body fighting for its life? We were told we would have a good week, but we didn’t know how much we would love it. Not only did Jace giggle, he happily did homework all day, and he rose to help himself when he needed his latest favorites: crushed ice and root beer. It’s amazing how much I loved to hear him laugh. I will never take that for granted again.

Aside from the infection scare at the beginning of the week, we have had an amazing few days. Not only did Jace giggle last night, he awoke this morning actually wanting to “get out of the house.” Normally we have to talk him into it, but today, he was set on going to Dayton’s last flag football game. This afternoon Jace went outside with Hayden for a while, and for a few minutes he even sat in the saddle of Grandpa’s horse while the guys led him around the pasture—almost life as usual.

Although Jace feels pretty well, he thinks he’s stronger than he is. Yesterday he heard Hayden’s bus pull up in front of the house. Jace bolted for the door, and his brain was ahead of his legs. He quickly buckled to the ground, and giggled that he “fell right in the middle of the floor!” In the last three days he has fallen right to the ground eight times. He always picks himself up (with a little help from mom or dad) and cracks a joke about it, but it is hard on a mother’s heart. Wow, am I learning some lessons about “getting up” even when it’s difficult.

As Matt was putting him to sleep, Jace started the giggles again. I could hear him from my room, and in my prayers I thanked Heavenly Father for this special giggling spirit in our home. We’ll take Jace back for more intense chemo on the 20th, and I hate thinking we will be driving him into more pain. Over and over I tell myself, “Embrace chemo, embrace chemo,” but it’s still a challenge to do so. Many of you have said, “I don’t know how you do it,” but the truth is we just “do it”-- and the giggles we hear are definitely helping to push us through.

Quick Update

Jace had a great day yesterday, and his Wednesday blood tests showed no infection. Either the antibiotics kicked in quickly, or we saw a very quick reaction to prayer. We also received word from Salt Lake that Jace’s Bone Marrow looks awesome. He is responding incredibly to the chemotherapy and he has the makings of immature red blood cells. This means his body is working overtime to repair itself.
Many of you have asked about Jace’s upcoming birthday and possible gift ideas. Jace and I talked about it this morning, and Jace would like you to use the Pay It Forward concept. There are many children out there who are sick, but maybe not with Cancer. Jace has been receiving so much attention lately; he would like some of it to be used to help others. He thinks maybe if you looked for someone else to spoil, then he would feel “happy” too.

We are trying to get caught up on homework today, as we haven’t accomplished too much over the last week. Thank you for your constant love and support. We couldn't make it without you.

Hair

Well, most of the men in my life are now bald.:) Jace, Hayden, Matt, Dad, and Brothers—Nephews, Uncles and friends… It was a regular party.

My views on many things have drastically changed over the last month. Last week my love for my sisters, cousins, and friends; mother and grandmother grew as they ran (or walked) the 5K for Jace, and last night my heart over-flowed with love for every male on my front steps.

Right before everyone arrived, Jace started getting cold feet. We almost called off the party, but he decided it would be ok, if he only had to “trim” his hair… but after the hair started falling, he was excited to be a part of the fun. I'm weepy this morning thinking of the power in numbers. The tears aren't flowing, but they keep escaping the corner of my eyes when I revisit the images: