Jace

This Year

2012-01-23T20:58:00.005-07:00

For the last two years when anyone asked how long Jace would receive chemotherapy, I would mechanically answer, "Protocol Leukemia treatment...three years for boys...His last scheduled treatment will be November of 2012." I caught myself a few weeks ago, suddenly realizing I could say, "It ends THIS YEAR!" Happy day.:)

Jace waiting for chemo.

Have we been here before? (Primary Children's Hospital)

Brothers.:)

Happy 2012

Love you all.

Merry (late) Christmas!

2011-12-29T17:52:00.001-07:00

All Jace wanted for Christmas this year was NOT to be in the hospital...or have to go TO the hospital on Christmas Day....and his wish came true!! Woo Hoo! We spent a wonderful Christmas Eve and Day with friends and family, and Jace had a miraculous recovery from his December 23rd flu...

I guess we had to have our typical scare, though, right? During the early morning of the 23rd, Jace became violently ill with the flu...and we were all sure our weekend plans were going to be altered. His fever reached 102 at 4 am...BUT, our Christmas MIRACLE came in the form a nurse who agreed to work at the office one last morning for the few people who needed chemo. We didn't have to go to the hospital, because she was there to communicate with the doc. A long story made short is that our sweet nurse saved Jace this time. You probably guessed that I cried thankful tears as we drove Jace home Friday at noon.

My heart is so full thinking about the sacrifice this mother of four young kids made for some of her patients. Jace left the office feeling 100X better than he went in, and he didn't get sick again. Here are a few pics to show how great this year's Christmas went:

Hayden and Jace playing the Kinect--Christmas morning...

Jace helping Peyton open her present at Grandpa and Grandmas' house.:)

Jace and Reagan, his sweet cousin.

I have a ton of pics from Jace's December LP and chemo...but they are sad. The above pics tell the real story... Jace is doing great. He's playing basketball for the first time this year, and he seems to recover from the chemo treatments a little quicker each time. This is our last winter to get him through with his low immune system...

Eleven months of chemo left!!

We can do it.

Merry Christmas.

We love you all.

ER and Thanksgiving

2011-11-26T15:29:00.001-07:00

Ahhh life.

At Jace's chemo appointment last week we learned his numbers were too low. He endured his usual sick week from chemo, and instead of waiting a month to see our dear friends at Teton Oncology, Jace had to return seven days later for another CBC. As we left the doctor's office the second time, the doc joked..."Hopefully I don't hear from you tomorrow!" We all glanced a weary look at each other, knowing if we had to call the doc on Thanksgiving...well....that would just plain stink.

Sure enough. After a pretty great day of actually eating a Thanksgiving meal for the first time in three years, Jace started getting sick mid-afternoon. By evening his fever was too high, and we knew we were headed to the hospital. Just in case the doctor told us differently...we called him. Yep. Emergency Room. Pronto.

Seriously?? Jace was so looking forward to a night of cousins and fun, and instead we drove him away from the party to his least favorite place. Jace was more than broken hearted and more than annoyed.

Luckily the ER administered the bag of IV antibiotics, and he wasn't admitted to stay, with the order to return the next day for more meds. By the time we were leaving, Jace had a crowd of friends coming to see him in the ER, and he left happy and feeling much better than when he arrived.

As a side note, after we left the hospital the next day (Friday), Jace reeeeally wanted to play raquetball and "work out." He's working on his six pack.:) Our little rock star left the hospital, and was doing pull-ups at The Ridge a few hours later. Man! He's fiesty.

Another awesome detail is when the nurse (not our usual one) was going through her list of things she had to ask him: "Does your family have a history of...What medicines do you take..." etc., she asked him if he smoked. We all giggled, and he quickly replied, "I only smoke my dad at basketball."

This morning when a friend asked me how our Thanksgiving was, I hesitated ...But it only took a second to focus...and quickly I realized our Thanksgiving was awesome. Jace ate dinner. We were surrounded by a loving family. We had a good hospital to take him to for medicine, and nice people worked the holiday to care for our little Iron Man.

Thank goodness for emergency rooms.:)

...and Many More

2011-11-02T19:04:00.006-06:00

October was the birthday month at our house, and as we sang to Jace this year, I was careful to add three important words on the end of the song… "and many more.”

It’s no secret I’ve been somewhat missing in action from this blog for an entire season… I’ve missed posting about several chemo treatments, but I’m assuming you are as exhausted by the same details as we are. It’s hard enough to experience it over and over…and I’m finding that actually writing about it is getting harder.

A brief summary of our last three months is that Jace is tough…chemo stinks…and yes, he still has another year of treatments. He has really great days enjoying regular activities, and he still has really sick days associated with chemo.

I noticed tonight that as an “I Stand Up to Cancer” commercial showed on T.V., our family just became quiet. We didn’t really say anything to each other, because it’s nice sometimes to leave that conversation alone…but the commercial made us somber, and we quietly related to it in a very personal way.

On the up side, Hayden and Jace are both at a speed and agility training session right now. That means, BOTH my boys are running again, and THAT is a beautiful thing.:) Hayden is healing wonderfully from his elbow surgery; Jace is in between treatements, so he feels great. This year for Halloween Jace decided to use the Iron Man costume from 2009 that he never used. I sure liked seeing his strong body fill it out. Every time I look at my Iron Man I think of how strong he is.... how much he's been through...and how cute he is. You can also be sure that recently when I sang "and many more" at the end of his birthday song....I only cried happy tears.:)
Two YEARS of chemo down.
One to go.
We can do it.

Trading Places

2011-08-27T18:56:00.000-06:00

Um, yep...That's Hayden.

I’ve neglected this blog, because all summer I’ve felt like our story has been more of the same. We have really good days, and then Jace still gets his chemotherapy treatments. We are trying our hardest to forget the word CANCER, but it still exists and Jace is still “raging against” it. This week our hospital visit was a bit different though because the patient was Hayden. He badly injured his elbow playing football, and our ROCK was IN the bed instead of standing beside it. (I quickly realized as the mom that I have a little post traumatic stress going on, and I am worth nothing in a crisis with my boys now.) Also, Jace is learning how it feels to NOT be the one on the couch, and Hayden has learned that it isn’t that fun to be hurt.:(

Last week I was sitting in a big auditorium listening to a speaker talk about suicide prevention. As she was trying to point out that mental illness is as real as cancer, she asked the crowd to yell out words associated with cancer. From all directions of the room, my nightmare came alive as words like CHEMO! HOSPITAL! PAIN! RADIATION! and LEUKEMIA!...were yelled and then someone right behind me in a very large voice yelled DEATH!!! I shrank in my seat and checked out mentally for a few minutes thinking through where my Jace had been and where he will be in the future.

Today I attended a funeral of a cancer victim. Garland was a good family friend. It was a beautiful service, and I appreciated how the speakers pointed out how much Garland taught others about service. I decided that next time someone asks people to yell cancer words I’m not going to shrink. I'm going to yell my own words like LOVE! BRAVERY!! COURAGE!

Great Grandma Grover called this afternoon to check on us, and I appreciated hearing her sweet giggle. She told me, “Honey, I just called to tell you that when you have boys, they are going to get hurt.”

I replied, “So I shouldn’t feel picked on, Gram?”

“No, Honey,” she said sweetly. “It’s just life.”

After a lot of years of raising a family and dealing with her share of ups and downs, Gram is right. AND After talking with her and telling her in detail how brave BOTH my sons are...how Hayden didn't even cry...how he doesn't even want pain meds...how Jace is now waiting on Hayden hand and foot-- I knew I wouldn’t trade places with anyone in the world.

The Survivor's Lap

2011-07-24T08:25:00.000-06:00

When Jace lined up for the Survivor’s Lap at Relay for Life this year, he stood among mostly adults all wearing purple Survivor’s shirts—with some exceptions: Hayden in his baseball uniform raced to get to Jace from the nearby baseball game (between innings) and stood with his arm around him among the crowd. Also supporting Jace were a few faithful cousins.
The walking began, and many courageous cancer survivors from our community once again proved that CANCER CANNOT WIN. Jace and Hayden walked in the middle of the pack, and tried to disappear into the crowd. Hayden didn’t remove his arm from Jace’s shoulders, and remarkably, Jace didn’t shrug it off. Then something so tender happened…
It became obvious that step by step more cousins and baseball friends joined Jace and Hayden and surrounded them while they walked. By the end of the lap our boys were completely engulfed by other kids. It was remarkable.

That night we had a large crowd for TEAM JACE walking the track…and still at 6 AM we had a large crowd walking the track. The support we received this year was amazing, and I remembered once again how much I love my family! This gathering of family and friends renewed the feelings we had when Jace was first diagnosed with cancer. People make the difference. Just like those children surrounded Jace and Hayden while they walked, my favorite people surrounded TEAM JACE and their very presence shouted to the world…cancer is going DOWN!

More photos are on my personal blog if you are interested.:)
Love you all.

SAFE!

2011-06-22T08:58:00.009-06:00

Jace is SAFE for now…In more ways than one! When he awoke from the anesthesia Thursday, it was obvious this time was hard on him. Matt carried him to the pick-up, and then into his second appointment for more chemo. He continued to be mellow most of the morning, but when he rolled his eyes at his esteemed Doc, I knew he was perking up. By the time the IV chemo was finished, he walked out on his own.

As with almost everything in life, sometimes things don’t go just how they should…and Jace’s blood work Thursday gave everyone a scare. His second draw Friday morning looked MUCH better, and we relaxed somewhat. After receiving the call that he had to go back for more lab work, Jace stood under a hot shower, shed a few tears, declared that he “hates cancer,” and then dried up to be his usual brave self. It reminded me of how gracefully he slides into base just under the fielder’s mitt. Every time I’m screaming from the stands, “DON’T SEND HIM!!” his coach knows he can make it…and every time he’s safe, I have to humble myself and have more faith in the system. It’s true for cancer too…

Would you believe we are STILL learning about chemotherapy even 21 months later?? (has it really been 21 months??) We thought Jace would be his sickest on Saturday, but it turned out that Jace felt well enough Saturday to enjoy a beautiful horse ride in the mountains with his Grandpa Randal, Matt, and Hayden. Then Sunday and Monday turned into pretty sick days for our chemo babe. He’s doing better today.

The local Relay for Life is this Friday in Rexburg, and we’d love to see you there! Jace’s legs are feeling weak lately, so he wondered if he could bring Grandpa's horse, Blue!:) That would be a sight, right? We giggled with Jace at the image of him riding his horse around the track all night. Although we probably won’t take Buck and Blue, we DO hope you will ALL join us in walking for a cause.

21 months of chemo down.

15 to go. We can do it.

Love you all.

We Danced!

2011-06-12T22:36:00.000-06:00

Although the Relay for Life event in Rexburg is a few weeks away, we were a little more organized this year and actually raised funds before the week of it! Imagine that! Thanks to EVERYONE involved in making our Zumbathon a HUGE success! We actually had a packed gym with nearly 100 dancers, and we are so excited to donate ALL of the proceeds from our fun night to the American Cancer Society.

Jace and Hayden were a hit too, as they lead the crowd in a warm-up and cool-down song. I fought tears as I felt the support and energy from the crowd of friends, family members, and even people I didn’t know, and I couldn’t stop smiling as my boys once again proved what COURAGE looks like. (I wish I had a picture to post, but unfortunately, I don’t! I forgot to take my camera.)

This week Jace faces another chemo treatment starting bright and early Thursday with an LP at the Surgical Center. This particularly tough treatment is only every third month, but he’s already decided it isn’t going to get him down. This morning he asked Matt and me if he could play in his baseball game Thursday night. I reminded him that the LP is like a surgery as he goes completely under anesthesia to receive the chemo treatment to his spinal fluid and brain. Then after he wakes up, he has his regular chemo through his port; he usually feels pretty crumby by the end of these brutal treatments. As I finished my best ‘mother’s warning explanation’… he looked at me to make sure I was finished. Then he persisted, “Well? Can I play in my game?”

COURAGE has many faces …
COURAGE this week wears a red and white baseball cap and swings a bat with force.
COURAGE slides into 2nd base after running for his life to hear the ump call him, “SAFE!”
COURAGE ignores his often sick stomach, the virus on his face that his body can’t fight, and his all too sensitive chemo skin that burns in the sunlight way too quickly.
COURAGE is still fighting cancer…and HE is amazing.:)

April, May, and June 1st!

2011-05-28T13:34:00.002-06:00

Life is crazy. Can I get an AMEN on that? It seems like just when I think I'll have more time to get the blog caught up, I am out of town. Today I'm typing from a lawn chair, on green grass, outside of my home state-- from the back side of a baseball field, waiting for Jace's 2nd double header to start. I've recently made the comment that maybe someday I'll write a book called, "How Baseball Healed My Cancer Kid" or "Why My Chemo Survivor Gets off the Couch"... but for now my sporatic blog entries will have to suffice to express my gratitude for this sport and the people involved.

Jace has endured two more treatments since I posted in March, and truthfully they didn't slow him down...much. Of course, he still deals with being tired, weak, and sick, but he doesn't WANT to be sick, so he pretends he's not. In fact, before his May treatment, we were driving in the car, and Matt made the comment, "I can't believe it's time for chemo again."

Jace very honestly sat right up and said, "I FORGOT I HAD CANCER!"

Matt and I made eye contact above his head, and my eyes welled with happy tears. I NEVER would have guessed our Jace would state those words after the last 19 months. I'm pretty sure it was the most beautiful thing I've ever heard.

(Matt and Jace before treatment at

Primary Children's Hospital in April)

(Hayden and Jace on game day)

I AM very excited about our Relay for Life Fundraiser this year... "Team Jace" is organizing a Zumbathon, with the help of my esteemed instructors: Amee Owens, Liz Stephenson, and Lacy Grover! Many of you who know me, know that last summer I found Zumba... and I credit IT for saving MY life...so this Wednesday night, everyone is invited to DANCE for a CAUSE!

Here are the details:

When: Wednesday, June 1st

Where: Madison High School (the new one)

Time: 7-9:30 PM

Cost: Donation (suggested $10 but more or less will be accepted)

Proceeds: 100% goes to Relay for Life for The American Cancer Society

Every time I watch Jace swing a bat I recognize that he is walking/living proof that much research has been put into treating cancer to save kids just like him. If we can make a little contribution to the progress of this research I know that kids in the future will have a chance at life...just like our Ironman!

Join us if you can. Jace and Hayden will be teaching the first song...to "Never Say Never." It might be a tear jerker.

17 months of chemo left...Jace is scheduled for his last chemo treatment in November 2012.

We can do it.

Mind Over Matter

2011-03-31T22:48:00.006-06:00

Mind over matter IS possible sometimes. I’m a witness. After baseball practice on a Wednesday night and with a brutal LP and chemo treatment scheduled for the next morning, together Matt and Jace decided he wasn’t going to let this chemotherapy treatment knock him down. Very matter-of-factly he stated, “I do really want to make it to my baseball practice Saturday, so I’m NOT going to get sick.”

To make a long story short, Jace handled his March chemo like a champion! He hasn’t missed baseball practice, and he is energetic and feisty. A couple of days ago Jace came in the back door with his pants completely packed with snow! (Yes, we still have piles of snow in our yard!!) I exclaimed, “WHAT happened?!!” (Knowing Hayden and Colten were playing outside and had probably done this)…
Jace put his hands up, like—back off mom—and said, “It is ok Mom! It’s ok. I deserved it! I WAS tormenting them.”

It’s so remarkable that Jace has the energy to torment his brother and friends, but even more amazing that he has the maturity to understand the idea of consequences and (loyalty to Hayden). Again and again, I witness Jace’s mental strength! I’m positive that his ‘mind over matter’ attitude is making him a courageous, cancer fighting warrior…and once again I’m trying….to learn from his example.:)

Fevers and Crazy Hats

2011-02-28T22:27:00.002-07:00

Another fever...another hospital visit...another round of antibiotics. Is this getting old to you too?

Besides having a temperature above 102 for 48 hours, Jace was feeling the worst about missing his "HAT DAY for CAT in the HAT" at school. Since he couldn't make it to school to enjoy the fun, we brought the fun to our house. Thank you everyone for turning what could have been a "sad fever night" into an evening of laughs and smiles and crazy hats!

Jace the Electric Blanket

2011-02-20T19:44:00.005-07:00

When Jace’s awesome teacher called and told me there was a lot of coughing in his classroom, I appreciated the warning and kept him home the next day. Little did I know he would be in the hospital 72 hours later with a fever that wouldn’t break. The Strep and Flu tests were negative, but his cough was deep and scary, and even meds couldn’t bring his temperature down. After four more days, a full treatment of IV antibiotics, and lots of fluids-- I nicknamed Jace my personal “Electric Blanket.” His little body was SO hot, all I had to do was hold him, and he instantly warmed me. Although I tried to find some good in his fevering body, I also found a fear again that I haven’t felt in a while. Life has a way of keeping us humble right?

President Spencer W. Kimball is quoted for saying, “God does notice us, and He watches over us, but it is usually through another person that He meets our needs.” I know this to be true, because I know Heavenly Father has filled our house this month with the love we need to get us through the fevers. Thank you ALL. We love you!

Jace’s fever finally broke just in time to receive another chemo treatment Thursday, so he’s here leaning on my arm as I type. He’s sick again today, with his normal reaction to chemo, but he’s not burning up…so I'm using a normal blanket to warm me:). Although I do enjoy the extra heat an electric blanket provides, today I love that Jace doesn't have a fever and that he's not a built in heater.

(How Jace feels today.)

Hi Everyone. This is Jace. My mom is typing for me, but I wanted to say hello. Hopefully I'll be able to come back to school Tuesday if I feel better. See you guys later.

Jace

One year and five months of chemo down. We’re almost half-way there. We can do it!

Busted

2011-01-09T16:56:00.002-07:00

So…Hayden finally has full permission to defend himself against our feisty, teasing Jace. Hayd thought the day would never come when BOTH Matt and I warned Jace, “You really shouldn’t tease your brother because one of these days you are going to feel well enough-- that we will let him tease you back!”

That day has come. This candidly shot photo tells a great story, right? The most ironic part to Jace was that his mom wasn’t rescuing him but was instead TAKING PICTURES! The nerve.

Christmas was great. New Years was a blast. We feel loved and blessed, and Jace is teasing everyone he’s around. Jace’s easiest chemo month is ahead, because he doesn’t have to go to Primary Children’s, and he doesn’t have to have an LP. Just Vincristine at Dr. H’s on the 13th. When J’dee recently asked Jace how many days of school he usually misses after his chemo treatments, he said, “Sometimes 1 and sometimes 2…but most of the time none.” After his excellent handling of the December LP and his proud presentation in the school Christmas program the week after his last treatment, I have so much hope this is true.

In years past when the boys wrestled with their dad, they begged (in a funny way) for help from anyone in the room, but I never jumped into the pile. I knew they could handle their own, and I would be in the way. Instead I just vocally cheered for the boys saying, “Go Hayden! Or go Jace!” To the contrary, for the last year, when Jace and Hayd would wrestle and rough house, I found myself stopping the fun pretty quickly-- stating that Jace could get hurt!, or that maybe he wasn’t strong enough to handle the play! But this holiday season, things have been different. Instead of stopping the fun, my voice is singing the most beautiful cheer I can utter… “Goooo Jace!”

(Even though they tease each other, they are still best buds.

This is them on Christmas morning in their new baseball quilts.)

Happy New Year everyone! Thank you for staying with us.

We love you.

Our Break

2010-12-14T15:56:00.003-07:00

We took a break from Cancer for a while. It was a welcome reprieve. Jace has felt so great lately I didn’t want to jinx it by saying it out loud or writing about it. Maybe I shouldn’t admit this, but we actually took a break from many things for the last month (including this blog), so now we still get to decorate our tree…put up Christmas lights…and try to get Christmas cards together in the next week. We probably need to shop a bit too, but luckily nobody at our house is stressed about it. It’s incredible how our priorities have changed. An hour ago, when Jace was sitting on my lap, I put my cheek against his, and he told me I am a good mom. I wrapped my arms around him, felt his warmth, smelled his hair (do other moms do this?), and smiled a real smile. He’s so amazing. He was on my lap, because he had a big morning. Another chemo treatment…and another lumbar puncture. I’ll let the pics from the last two treatments tell his story, since I ought to think about being responsible again. Wish me luck on the Christmas Cards… :)

(The night before his haircut.)

(Primary Children's Hospital November 15)

(Getting ready for chemo December 14)

And.....Still Smiling. Gotta love this kid!

Eight Years Old!

2010-11-04T17:50:00.004-06:00

Last year I couldn't think of anything more wonderful than Jace turning 8 years old! We just had to make it through the year. We had to make it to his next birthday. Now it has happened, and I am realizing how quickly time is passing. One of the more common expressions I use on both boys (in my best, yearning mother's voice) is, “STOP GROWING!” I try to cuddle them daily, and pull them into me for extended hugs...but they always pull away too quickly. My oh-so-tough little men are determined to one day be bigger than me. I tease them and say, “No more milk! And definitely no more veggies or anything with vitamins in it! Only junk food for you!” They just giggle at me, and wonder about my sanity. “Mom,” Jace says very matter-of-factly, “We can't stop growing.”

True.

Last week Hayden had to make a poster featuring the “Leatham Culture.” I asked him what he thought that meant. He replied by saying, “You know, like how our family is always playing sports- and how we go to church...how we spend lots of time in the mountains and with family, and how we love to eat Hawaiian Pizza...or Jimmy John's sandwiches.” I thought to myself, well, I guess he does “get it.” Then, when he actually put his poster together, he added that as a family we “fight cancer.” Jace saw the poster and exclaimed a little bashfully, “Why did you put that?” I reminded him that we DO fight cancer. "True that!” he annoyingly replied. “And we ARE pretty good at it.” For a lot of Jace's early life I wondered what I was going to do with his energy and spunk. Now I understand why he was born with attitude.
Jace is also sporting the longest hair he's EVER had in his life. In so many ways I have mixed emotions about cutting it or letting it grow. Everyone comments on his chemo “shag” and his blond curls (new since chemo). It honestly looks like he's highlighted his hair. Although he IS adorable with his hollywood hairdo, it's coming off next week. The chemo hair on the ends is pretty dry and hard to comb, and Jace is finally ready to lose the locks. He has a big day coming too, and he's so excited. On November 13th, Jace gets to be BAPTIZED and Confirmed a Member of The Church of Jesus Christ of Latter-Day Saints.

Please join us for his special day if you can. If you want details on when and where, call us (208-356-3042). We will be eating after his confirmation, and our family would LOVE for ANY and ALL friends and family to join us.

Cheers to celebrating the 8th year with our amazing, cancer fighting Jace!

Chemo again on the 15th.

Less than two years of chemo left.

We can do it.

Hellooooo?

2010-10-17T21:15:00.002-06:00

Thursday morning as I zipped Jace’s jacket at the front door while he watched for the bus, I reminded him softly that I would pick him up for chemo after school. His jaw dropped, and he went silent for a second.

“Today?” he questioned as his bottom lip quivered, and his eyes filled with tears.

“Yes honey. Today,” I replied, fighting my own emotion. I decided right then we need help! We need to learn to celebrate chemotherapy. I’ve heard of people dressing in a particular color on chemo days…but I’m really at a loss for any other ideas…and I’m not sure wearing a specific color would make a chemo day better for Jace. Come on friends…any thoughts? I need some fun ideas. Can anyone think of anything??

Luckily, Doctor H, Linda, Leslie, and Becky (our fabulous nurses!) and all the other staff at the Doctor’s Office saved the day this time by spoiling Jace as usual. At least he looks forward to seeing his “other family” at Teton Oncology. I even have proof of how much he gets spoiled:

(Thanks Linda and everyone. We sure love you.)

Chemo went fine, but I know WHY Jace’s lip quivered when he realized he had chemo that day...he has been sick to his stomach in the mornings since his treatment, his back hurts, he's weak and tired, yet he can't sleep, and he’s had a headache. In other words, he KNOWS now what chemo does. He really hates feeling sick, but one cool thing about Jace is if you ask him how he’s doing, he’ll always say fine.

I just asked him why he always replies that he's "fine" when I know he feels yucky. He replied, "Because I AM fine, mom. Helloooooo?"

Round Two

2010-10-03T21:01:00.002-06:00

To briefly update those of you who might be reading, we left the hospital Friday morning, with plans to return again Saturday for another round of antibiotics. After a pretty mellow Friday, Jace felt better by that night, and was able to attend Hayden's football game Saturday morning. WHAT a beautiful day! Jace's temperature was down a bit, Hayden played TOUGH as usual, and we didn't go back to the hospital until late afternoon. As we walked out of Madison Memorial after Jace received round two of the antibiotic, I said to Matt, "I think that may have been the most pleasant experience we've had at the hospital yet." He agreed by saying, "It's getting easier, isn't it?" Thank you Nurses Tammy and Denise (and Karen from Friday). We appreciate you!

Fevers

2010-10-01T03:42:00.043-06:00

Oh the JOY of cancer. It's 3:45 AM, and we are in the ER. Jace's fever started rising about 9 PM, so we watched it for a while, and at 101.4 we forced ourselves to call his doctor. We really hated waking the good Doc at 1 AM, but when Jace couldn't sleep anymore for his cough and aches, we knew it was the right thing to do. They just took chest x-rays and blood...and he's receiving a bag of fluids and antibiotics. We'll know more in a while.

In the meantime, here we are. Jace was so mad at us for taking his temperature over and over again because he doesn't WANT to be sick, but by the time we arrived at the hospital, he was too tired to fight us. I would cuss fevers except that his fever a year ago helped us find his cancer...so ...technically we should be grateful for the sign that something is wrong. I'm working on my "we are thankful for this fever!" face. This fever helped him get the antibiotic he needs to fight whatever his body is fighting. It's a good thing nobody's going to *see* my "thankful for fevers face" for a few hours, though. I need to perfect the conviction. :)

No Matter What

2010-09-28T06:35:00.002-06:00

Cancer dialogue is different than regular verbiage. Gone are the days when I mindlessly used blanket phrases of comfort on someone like, “It’s going to be ok.” You can bet when I look into the eyes of someone with cancer now, I really think about the words I speak. Because there are so many kinds of cancer, and so many different stages and outcomes, the results of treatments are NOT the same for any two people. It’s very difficult to assure someone who has just been diagnosed- that “Everything will be fine.” Everyone has their own interpretation too. In the beginning stages of Jace’s cancer, when someone would say “It’s going to be ok” to me, I would think in my mind, “You don’t know that.” People would say to me, “Hang in there,” and I would bitterly think, “Hang in where?” …Because “OK” to me meant that Jace would miraculously be found cancer free…or he wouldn’t have to suffer…EVER. In my ignorance, my faith was based on the outcome *I* thought should come to pass. Maybe I shouldn’t admit to my gloomy thought process, but I’m being honest when I explain that I’ve learned a few things over the months about what comes out of my mouth and what I think in my mind. I’ve also had to repent that I didn’t have more faith in the Atonement and more hope for the PEACE it offers on this earth. In other words, I forgot to see the BIG picture- and I failed to see that life on this earth is just a small portion of the eternal realm.

The reality is, my faith has been tested, and I’ve been blessed with the testimony that everything IS going to be ok, NO MATTER WHAT. I have such a firm resolve that if we add that phrase to the end of every phrase of hope, we can allow the Savior to take over and make everything “OK.”

Jace only missed 4 and 1/2 days of school with chemo this time, and he is mostly enjoying regular life as a 7 year old. His legs aren’t quite as fast as he plays flag football, and his “juke” isn’t quite the same as it used to be, but we’ll take it! I silently said a prayer of thanks at his game last night, that Jace was on the field and doing something he loved. It didn't matter that we lost in OT, and it didn't matter that he missed a few flags. Jace was running, and that was huge. He was also smiling, with a head FULL of hair! It's funny how priorities change, right?

We’ve given away a few more cancer bags, which means we’ve made more friends who are fighting cancer. I find myself adding names to my personal prayers daily, and I feel so close to families dealing with the ugly disease. I get to donate blood today after school, and when Jace found out he said, “Mom! Are you going to be ok?” I think he remembers from the last time I donated, my pale skin, blue lips, and shaky hands! ha! I told him if he can fight cancer, I can at least give up a little blood. He smiled and patted my hand. "I'll go with you," he said. I sure love that kid.

Besides, I can't worry. Because, it WILL be ok…NO MATTER WHAT!:)

Training With Weights

2010-09-16T23:25:00.002-06:00

Yep. It's that time again. In his dad's arms, my cute Jace is sleeping right now with a cold sweat and body aches. Our Iron Man was under general anesthesia Wednesday morning by 7 AM to receive his Lumbar Puncture. [As a review, this means he received a chemo treatment into the spinal fluid (administered through his back), to reach the brain]. After his LP, we proceeded to Teton Oncology for him to receive the rest of his IV chemo through his port. We learned there that his WBC number is somewhat low; which I've come to learn means his daily oral chemo is just doing it's job. It's difficult for my heart not to freak out when I see the lab results and everything is flagged as L (low) or LL (really low!). But my brain (once in a while) kicks in and says, "It's ok Amy! This is what chemo is suppose to do!" I'm just waiting for someone to invent chemo that only kills bad cells and not the good ones too. (Calling all brainiacs!)

Since Jace has been running around and appearing NOT sick, the common comment we hear (almost daily) is, "He's finished with treatments, right?" We also hear, "If he's in remission, then why does he still have chemo treatments?" Because of the nature of Leukemia, he actually won't finish his chemotherapy for two more years. That's right, party people! We are all looking forward to the gathering we'll have in the fall of 2012 to celebrate "NO MO CHEMO!" right?? It's such a beautiful thought to be finished with chemo, that sometimes even *I* can push away the dreaded fear of Jace's cancer returning when the chemo stops...I'm actually not even going to go there tonight...because... Although Jace had to endure poison being pumped into his body, we were able to personally place TWO cancer bags that same day, and we are praying for our two new friends McKenzie and Dean.

I LOVED something Dr. Hancock said also. He explained that Jace will get so used to having low numbers, that it's like training with weights. In two years, when the chemo is finished (we hope forever!), the weights will be lifted, and he'll be stronger and faster than he ever thought possible. Sooo, training with weights is an interesting concept to me. Training AT ALL is sometimes a hardship. Who is with me on this one?? I can barely manage the 5 lb. trials that are thrown at me, let alone the hefty 50s or 100s. As I watched Jace wake up so sick this morning, I wondered how I could just take his weights for an hour or two, so he could continue to sleep and not feel the nausea and discomfort chemo brings. But, we all know the truth; Jace wouldn't let me if I could. This Iron Man is training for something BIG!

Oh, and you might smile to know what Jace requested for breakfast: None other than....Olives.:)

A NEW YEAR!

2010-09-11T18:00:00.016-06:00

This morning was AMAZING. With the help of an incredible family and loving friends, we turned the anniversary of Jace’s diagnosis into a BEAUTIFUL DAY. Supplies came pouring in, and assembly line style we produced 15 bags to give to new cancer patients- similar to the one we received from a parent at Primary Children’s Hospital one year ago. THANK YOU everyone who supported this event and donated time and/or money. We NEVER could have done this without ALL of you.

The words to a favorite hymn keep running through my mind and taking me back to that place one year ago, when we didn’t know what the future brought for our incredible Jace!

“Fear not, I am with thee; oh, be not dismayed,

For I am thy God and will still give thee aid.

I’ll strengthen thee, help thee, and cause thee to stand,

Upheld by my righteous omnipotent hand.”

(September 13 or 14, 2009

with 95% cancerous blood)

“When through the deep waters I call thee to go,

The rivers of sorrow shall not thee o’erflow

For I will be with thee, thy troubles to bless,

And sanctify to thee, the deepest distress.”

(In remission September 10, 2010

READY for two more years of chemotherapy)

Our rivers of sorrow have been replaced with rivers of gratitude today, and my heart is warm thinking of the goodness we have seen in others for the last year. From members of our families reaching out in small ways- to friends attending us; and even strangers becoming dear loved ones, we have grown and loved in ways unknown to us "pre-cancer." Thank you everyone for staying with us! It's been a year, and we still feel your love.

Jace and his cancer bud, Mark Steiner also wrote letters to put into the bags, and I took a picture of Jace’s letter. I think it's a perfect way to end this post and this year of cancer!

"Hope Now"

2010-09-09T03:20:00.010-06:00

I can’t sleep this morning. My brain won’t stop. So many things are swirling around in it including the juggling act school has added to our world, and the “Cancer Service Project” we are doing on Saturday. Jace also has chemo next week, including an LP with general anesthesia. In addition to these details, I can’t believe it’s been A YEAR since our world changed. So, now because I can’t sleep, I’ve been reminiscing by reading the blog posts from last September, and for the first time, in a long time, I’m letting those blasted tears fall again. I’ve told some of you this, but until this summer, I couldn’t read BACK even one blog entry. The reality of Jace’s illness wouldn’t allow my heart to even think about yesterday. I had to look ahead- move ahead- survive the day…or the hour, whichever it took. But this morning I’ve been reading. Here are a few excerpts from the first posts in our cancer journey:

“Friday morning (9-11-09) Matt went to work, and I stayed home with Jace. Around 10 AM Jace decided he wanted to bath. Normally he spends an hour in the bath if I let him, and after three songs on his Primary CD, he was ready to get out. He was shaky and he had to sit down, wrapped in his blanket, on the toilet. He said, I’m so dizzy mom. I helped him comb his hair and brush his teeth, and I had to carry him back to the couch. He said he heard a hissing in his ears. He even said, “I don’t want to die, mom.” Kneeling in front of him I assured him he wasn’t going to die…”

“…I’m just looking at his file right now. I think you better bring him in again.”

“…We are driving to Salt Lake now. It is 8:03 PM. Matt and I take turns crying. Everyone is calling. Hayden has a scared look in his eyes, and Jace is finally asleep. He’s had blood drawn 5 times in the last 60 hours. He cried worse every time. The last time at 4:15, Matt and I were both crying with him…”

“…Primary Children's Hospital: We are checked in, and it's not just a giant nightmare. It's almost 2 AM and they just came in after looking at the latest blood draw and said Jace needs more blood. His red blood cells aren't carrying enough oxygen to his major organs, and his heart rate is too high. They just took more blood, and they should have a positive match within a couple of hours. Jace is being such a sweetheart; when he saw my dripping tears while I listened to the doctor, he started rubbing my back…”

“…If you are reading this, please pray for Jace. Whatever form of positive faith and energy you can send our way will not go unrecognized.”

Wow, right? Did we really live through that??

I have a new favorite song.
It's called, "Hope Now" by Addison Road.
Some of the lyrics state:

If everything comes down to love,

Then just what am I afraid of?

When I call out Your name,

Something inside awakes in my soul

How quickly I forget I am Yours.

I am not my own.

I’ve been carried by You,

All my life.

Everything rides on HOPE now.

Everything rides on FAITH somehow.

When the world has broken me down.

Your love sets me Free...

The truth is, for the last entire year we HAVE been carried by our loving Heavenly Father and our Savior Jesus Christ. Thank you all for your continued prayers and support. Everything truly does ride on HOPE and FAITH now, and I am so grateful for these blessings in our lives.

So although this morning I’ve been a little tearful, I have to admit it feels really great to say ADIOS to the last year…to fear…and sadness… I am full of HOPE for the future and an undying FAITH in an atoning Redeemer.

We are moving on, CANCER! …and we’d prefer it if you DON’T follow us!

Two years of chemo left.
We can do it.

ONE YEAR Project

2010-09-06T22:11:00.001-06:00

It's almost been one year....so stay tuned for a better post...but in the meantime, if you'd like to join our family with a small "project," check out my personal blog for information: amyleighleatham.blogspot.com

First Day of School

2010-08-29T21:01:00.002-06:00

Jace SPRINTED to the bus on the first day of school...without even looking back. I kept waiting for him to turn and wave...ha...but he didn't! I guess after listening to the bus come and go for an entire school year...he wasn't going to miss that baby!:) He LOVED his first day of school, and even his second day, but Thursday night he crashed at 5:30 PM to sleep ALL night. Friday morning was a little rough, but when I reminded him of all the mornings he stayed home last year, he quickly dressed and found his backpack. He was GOING to school! These are first day of school pics:

This family photo was taken right after Hayden's first game. He played AWESOME! Football season signals a COMPLETE CIRCLE for our family this year, because if you'll remember, Jace was diagnosed with his Leukemia last year a few days after one of his flag football games! I remember sitting in the hospital on September 11th in complete shock that my little Jace had just run the width of a football field to score a touchdown...with 95% cancerous blood! Crazy stuff. WOW, I sure wouldn't trade places with me- then. I'm actually really shocked after the last year, that I'm still (mostly) mentally stable!:)

As a family we also attended Madison High School's football game Friday night (Go Cats!), and as I watched Jace run up and down the stadium stairs, I couldn't help but remember last fall when Jace was too sick to pick his head up off the pillow. I'm not sure what the future will bring, but this week I am so grateful for our football loving- school attending boys...even when they sprint to get away from me...HA...and they don't look back over their shoulder to wave at their tearful, mess of a mom.

1,000 Books! Woo Hoo!

2010-08-24T23:30:00.001-06:00

My night owl just finished his 1,000th book. Nothing like waiting until the last minute, right? He wanted to finish his goal before school starts, and he did it with nine hours left! He also scored a touchdown tonight in his flag football game, so you’ll believe me when I say that his chemo treatment last week was handled with the courage and fortitude of a true IRON MAN! I’ll post some “first day of school pics” later this week, but I just couldn’t wait to report that Jace is doing amazing.

(getting chemo in his port)

(running it in in for a touchdown!)

Our modern miracle- and the hero of our hearts-- gets to climb on the bus in the morning and go to school with his cousins and friends, and his last year’s backpack that he didn’t get to use. He is sooo excited. He’s sitting next to me with wide eyes right now...showing no hope of sleep…much like it’s Christmas EVE.

I’ve got the hand sanitizer and disinfectant wipes in his back pack, and he’s been drilled about washing hands…and cleansing his desk periodically. A few minutes ago I felt his forehead and he felt hot. He saw the look in my eyes, and he immediately piped up, “I’M OK MOM!” ...and he is...but I'm not sure I am!

Guess what everybody!?? Jace is going to school…

Warriors

2010-08-15T22:45:00.002-06:00

Over time, hundreds of warriors have made their mark in history- the greatest warriors have become immortal as a result of the great victories they achieved; their bravery, perseverance, and determination have written the stories of their battles and their names on the sands of time.

But, what is the real definition of a WARRIOR? How is an enemy defined, and what types of battles classify a warrior? These questions came to me as I was watching the movie “Letters to God.” This movie is about a little boy fighting cancer, but we had NO IDEA how emotional it would make our entire family when we rented it from a Redbox two days ago. I don’t think a movie has EVER hit so close to home as this one, as there were multiple scenes from it that could have been our family! Sometimes I would look at the screen and have to blink my eyes because I thought the bald boy facing us was Jace. AND, I’ll tell you honestly, I am SO glad we didn’t accidently rent this six months ago. It is that tender.

The thing that really struck me though, is that concept of being a warrior. At one point in the movie, there was a little boy making fun of Tyler, the child with cancer. Tyler goes to a Grandfather for advice. The Grandfather tells him that the others are jealous of him. This is unbelievable to Tyler. He says sarcastically, “Jealous because my hair fell out???”

The Grandfather answers: “They are jealous because you’ve been chosen for the role of a lifetime. You’ve been hand-picked by God….God has chosen you to be one of HIS warriors. As one of God’s warriors, you can ride forth victoriously in truth, humility, and righteousness.”

As I watched this scene in the movie, my new epiphany pounded in my chest. The Grandfather was right! He continued as if he were talking to Jace: “Even though you are sick, when people see how strong and brave you are, it makes them take a look at their own lives... There is a glorious truth. God is truth, and it is your job to point them to Him, and if they turn to Him, they find the truth. Wouldn’t that be a wonderful victory?”

I looked over at Jace during the movie to see what he thought. Does he know he’s a warrior? Does he know this is the role of a lifetime?? I found it interesting that he was the only one in the room NOT crying! It made me smile. He’s so tough. People have asked me over the course of his treatment if Jace realizes what’s really going on. I think he does, but I often pray the lessons we’ve all learned from this trial of cancer don’t pass over Jace himself- because he’s so young…will he really remember??

Hayden on the other hand was emotional throughout the film. He gets it in a different way I guess. He understands. Obviously there are different types of warriors.

So it is, in life. Everyone has their struggle. Everyone is fighting some sort of battle, and we’ve been chosen to fight our particular fights. I’m still not convinced I chose this one- Everyone who knows Jace is sure that he was first in line, but I think I was kicking and screaming to get away from this challenge. Matt probably had my back pushing me forward, and Hayden was on my side saying, “We got this! We can do this!” Oh, and let’s not forget the army behind us made up of all of YOU! Thanks a lot!

When the movie was over, Hayden asked me if I liked it. I said, “NO! It was awful!” (It was actually really inspiring and touching, but it hit way too close to home.) “But mom,” Hayden replied, “It taught us how to be more like Christ!” Yes it did. How could I argue with that? After all, Hayden spoke just like a true warrior.

Chemo tomorrow. I'll let you know how it goes. Wish us luck.

"Let Me Hold You Longer"

2010-08-09T21:25:00.004-06:00

Every once in a while a children’s book comes along that tugs on my heart. My boys have patiently tolerated me singing “I’ll Love You Forever” (to my own made up tune) to them, and I still joke that I sneak into their rooms at night and rock them “back and forth.” My latest favorite children’s book though is called, “Let Me Hold You Longer” by Karen Kingsbury.

I bought both boys their own copies for Christmas in 2008, and signed them lovingly as usual, but I’m not sure my guys really care about them yet. The new copies immediately went into the pile of books I have purchased for Hayd and Jace over the years and started collecting dust. I’m hoping someday they will appreciate that their crazy mom loves the written language and finds satisfaction in sharing this type of expression. For all YOU veteran, “book giving parents” out there, does this ever happen?? Do your kids ever go through the pile and really understand what you gave them? I have my doubts...so I'm just wondering.:)

As Jace is trying to finish his goal of reading 1,000 books before school starts, we’ve dug deep into the closets of our home for books he can read. “Let Me Hold You Longer” emerged once again, and little did I know what a profound impact it would make on me tonight, August 9, 2010. Hayden just cuddled up to me and asked me what I was looking at. I showed him the cover, and he asked me to read it to him. I guess he is my kindred spirit because we both wear our emotions out on our sleeves- I read about two pages to him, and we were both crying!...then laughing at ourselves because we were crying!! (Who would think that my Hayd who can hit homeruns and tackle with such aggression could be so sweet??!) I was touched that my great big, almost 12 year old Hayd still appreciates how much I love him. I highly recommend the book; it is SUCH a tender story about a mom watching her son grow up.

In summary, the narrator talks about how sometimes we focus so much on a child’s firsts…that the “lasts” often go unnoticed. It made me realize how every day life moves on, and if we are in too big of a hurry, we may not appreciate the amazing things our loved ones do…AND the sad truth is…they might never do them again! Yesterday I sat down by Jace and reminded him I hadn’t received a hug all day! As he has started to have more good days than bad, he is busy and going every minute. I watch him out the window play in the yard, and I cry happy tears that my JACE is throwing water balloons, riding his bike, playing capture the flag, and tormenting his brother. When I reminded him yesterday that he and I hadn’t had any cuddle time, he wrapped his arms around my neck and promised he would never get “too cool” to hug his mom. We’ll see. I’m not going to hold my breath.:)

Thursday Jace finished his last soccer game, and he even scored a goal! He’s looking forward to starting Flag Football and SCHOOL! We’ve scheduled his chemo for August a little early (next week) so hopefully he will be feeling better by the 25th, and his numbers will be ok to go! Everyone has been asking how I feel about sending him to school, and the truth is, he reeeeeally wants to go, so I can’t complain. I’m nervous and scared that because I can’t control his environment (like I’ve been doing), maybe he’ll get sick with something else…or that we will have awful mornings getting him out of bed…or a variety of other stressors that make me lose sleep at night—but I know from experience that now is the time to put it in the Lord’s hands and have FAITH that it will be ok, NO MATTER WHAT.

So, as much as I’ve been counting down the chemo DAYS and MONTHS and YEARS left…I’m sure hanging on to the hugs I get in the quiet hours at our house. Thanks to a simple children’s book and my sweet Hayden, I’ve been reminded that I need to enjoy the journey. I need to hang on a little longer to every sweet moment.

On Loan

2010-07-24T09:01:00.001-06:00

As we pulled into the parking garage at Primary Children’s Hospital Thursday morning, Jace said, “Park where we always do, dad!” The once raw and cruel reality of being at this hospital has been replaced by habit, and Jace practically sprinted in to see his doctor on the 4th floor. Matt and I *think* today was the first day we didn’t have to carry Jace in. It was amazing to watch him notice the new things on the hospital grounds and act like he owned the place. Although I’m so GRATEFUL I could follow Jace in with a smile, I could not ignore the very tender spirit in the air as I thought about the recent happenings at this hospital. If you live in Rexburg you know that I’m talking about Preslee, and if you don’t, you can check this blog for the whole story. http://patrickandashley.blogspot.com I won’t try to explain.
I will say that as usual I don’t really understand much about life. As I struggle to understand why Jace has to endure the trial of cancer… and why other children are taken from this earth so quickly…I recognize that I have NOT yet mastered the internal battle of questioning that goes on in my mind. With this very real struggle alive and well, I attended an excellent meeting Sunday that helped my perspective. Not only did I feel the Spirit so strongly in all of the messages, I also appreciated a closing remark by President Parkinson, a recent organ transplant recipient. He softly explained that he doesn’t know why he, as a 51 year old adult, would remain on the earth, and a baby so perfect as Preslee would be taken…and he reminded us that really everything is dependent on the Lord’s will. This idea took me back to a quote on Pat and Ashley's blog:

Elder Neal A. Maxwell rightly said: “The submission of one’s will is really the only uniquely personal thing we have to place on God’s altar. The many other things we ‘give’ … are actually the things He has already given or loaned to us.” This is an especially powerful thought to me, since Elder Maxwell died from an eight year battle with Leukemia.

Sometimes when I look at my boys I remember what an amazing gift it is to be a mother and have children loaned to me- because they are so good and so beautiful (sorry boys- I know that’s not a manly word)! I know through their divine qualities they can ONLY come from a perfect God- and that HE is allowing me to raise them on this earth- (or they might be raising me…). They are mine, on loan, and it is my responsibility to do everything I can to get them back to him. I am so thankful for the knowledge I have of eternal life.

(Hayden and Jace Walking in the Hospital)

So, one more visit to the hospital is behind us, with Jace enduring chemo like a champ. Right after we left PCMC we followed Hayden to a baseball tournament in Heber City. Jace was fine the first night, but Friday morning he started sinking, and by Friday afternoon he had to be held and carried. Friday night in the hotel bed he begged for us to be by him. We took turns: first I caressed his arms and neck- then Hayden cuddled up to him. Finally Matt took over and helped him fall asleep.

Today I am grateful for ALL of the people “on loan” in my life, and I pray that I will someday be able to fully submit my WILL to the Lord with complete understanding and acceptance. Ten and 1/2 months of chemo down. Two years and 1 1/2 months to go. We can do it!

Reflections

2010-07-05T08:55:00.001-06:00

While walking for the Relay for Life at 1 & 2 AM and then still at 3 AM…and 4, my tired brain tried to process why it was that I had allowed this handful of devoted friends and family members to miss their entire night’s sleep to walk around a track. It seemed a silly thing to be doing, when really there was no consequence for our team if we just quit walking. There was no patrol or judge standing on the edge saying, “Do you still have someone walking?” or “How many laps have you made?” But there we were- making sure someone was always representing Jace.

I didn’t have any answers then, probably because I was too tired to make sense of it, but I’ve continued processing it for the last nine days, and looking back I’m very tender about some of the revelations that have filled my heart.

The whole Relay was purposely symbolic, starting at sundown. During the opening comments they compared the start time to when someone is newly diagnosed with cancer. They said, it is a time when the sun sets and darkness comes. I’ll attest that driving to Primary Children’s Hospital for the first time last fall certainly felt like a dark time in my life- and one where I didn’t know if we’d make it through the night. But the journey continued, and through the very dark hours we kept walking. Lots of family and many friends attended us on our way, and took over at the ideal minutes- just like in Jace’s fight. As if by cue, the right people have come into his life and taken their turns strengthening him and helping him on his way.

At 10 PM there was a silent lap in honor of the people who have died from cancer. The track was full, and the night sky was flashing lightening. Thunder boomed all around us, and my senses were fully aware of the electricity in the air. Just as soon as we finished the silent lap, the rain started pouring. Many members of our team were still there and hovered under our little canopy. At one point I looked at the people in the corners holding the thing down. I knew it was dangerous for those cornerstone people to be holding the metal frame of the canopy, but I also knew there was no way I was going to talk anyone into going to the car. It reminded me of receiving help during this whole trial. It is so difficult to just allow it to happen! Maybe the most humbling experience of the night was when I looked into the eyes of the people still there and told them they should go. It was pouring rain! It was late!...but consistently as I scanned their eyes they firmly resounded, “We aren’t going anywhere.”

(Hayden, Kyle, Kyler, & sleeping Jace)

So, our team walked all night. We walked, and we talked, and we honored Jace with every lap. Not because we had to, but because it was our privilege to represent something greater than simply walking a few laps. We walked because we knew it was our way of saying CANCER WON’T BEAT US. It WON’T break our family, and it WON’T silence the courage we see every time we look at our 7 year old, spunky, determined Jace.

(Matt taking Jace home at midnight)

(Dylan, Dayton, & Jace @ the 4th of July parade)

(Jace & Hayden fishing with Dad)

(Finally riding horses again: Jace and Hayden with Red)

On a side note, Jace's CBC this week was fine. His numbers rose enough to eliminate concern, and Jace enjoyed a perfect, normal, 4th of July weekend. His hair is so cute. It is coming in quickly now, and I’ve been calling him a furry little monkey. The color is slightly different than it ever has been, being a little more blonde with a little more body. Although I think I’ll have a hard time cutting his hair (ever again!), I did trim his sideburns and the hair on his neck. His silky smooth legs of days past have been replaced by thick blonde hair, and his dark eyelashes and eyebrows have brought back the Jace we used to see. We do not have to return to the doctor until July 22nd, and then we will be traveling to Primary Children’s Hospital. After that we will have to start figuring out how to deal with chemo and school! We are both planning on returning to our former life of school, so wish us luck with the whole- ‘getting Jace out of bed before 10 AM’ thing.

Last night as I sat under the stars with my favorite people and watched fireworks explode above our heads, I reflected on the events of the last ten months. Watching Jace run around the yard with his cousins has a whole new meaning this year. I’m so grateful for every minute I have with the people I love, and I never want to become callus to that again. Thank you all for your influence in our lives. Ten months of chemo down. Two years and two months to go. We can do it.:)

Relay for Life

2010-06-23T10:18:00.003-06:00

With every year that passes I find myself realizing how difficult life really is. Because I had a wonderful childhood, I grew up under the impression that adults knew all of the answers, they always did the right things, and life was good- and fun- and happy. I have you all smirking at my naivety, now though, don’t I? Because the hard, cold truth is, now I'm the adult, and I don't know anything! Adults don’t have all the answers, and sometimes we actually need our kids to help us through the difficult things.

I have a vivid memory of a Monday morning years ago, when as the teacher I had to walk into my classroom full of high school seniors, and discuss the death of their two classmates who were killed over the weekend, one of whom should have been in my classroom. I took a deep breath at the door, tried to gain my composure, and walked in to 29 tearful, grieving students. I was immediately at a loss for words as I stood in front of them, and my tears started falling again. The only dialogue I managed was, “I’m so sorry. I don’t know how to be the adult today.” They rose from their seats and engulfed me, and we all embraced and cried together.

That experience tenderly reminds me that although we try so hard to appear to have all of the answers, sometimes we just don’t, and allowing others to see our tears isn’t always a bad thing.

At 7 AM yesterday, we lovingly whispered, “It’s time to wake up,” in Jace’s ear. It was a “chemo” day, and a big one. In addition to his regular IV chemo, he would also receive general anesthesia for a Lumbar Puncture. Our nurse Linda pegged my feelings exactly when she said, “I bet it’s hard for you to bring Jace back to treatments after he’s been feeling so well.” Yep, that’s right. I hate it. It makes me want to swear, and I don’t even cuss. In fact, it puts me on the edge of bitter again…despite my efforts to NOT go there.

Also, after his CBC, we also realized Jace’s numbers were lower than they should be right now. WHAT is THAT about? When I say numbers, I mean, his ANC, HCT, and HGB. Although our next scheduled appointment was at the end of July, Jace will return for another CBC next week to see what’s going on. Like a trooper though, Jace diligently made it through the day of chemo. Last night I was taking inventory to make sure I had given him all of the right meds at the right times, and my heart ached for his little 63 lb. body. I counted pills: 1 ½ 6MP, 8 steroid pills at .75 mg each, and his usual 1 ½ Septra pills on Tuesdays. In addition to that he had chemo in his spinal fluid, and chemo in his port.

(Waiting for the Lumbar Puncture)

(Watching them take Jace away)

(Trying to wake up in recovery)

After an emotional day Jace said to me, “What’s the matter?”

I replied, “Why do you say that, honey? Nothing’s wrong. I’m ok.”

He said, “You have your ‘matter’ face.” I finally smiled for real. He’s so cute.

We have a team walking in our local Relay for Life this Friday, June 25th, and our Rexburg Jamba Juice is sponsoring us for our fundraiser. They are actually donating 20% of any purchase to Relay for Life if you take in our flyer that says, “Jamba and Jace” for the cure. If you need a flyer, we have some sitting at the Madison Ridge Chiropractic Center, Teton Oncology, and the Madison Surgical Center. Also, we’ll be passing them out all week at the Madison Baseball Tournament. If you can't get a flyer, you can actually just order Jace's favorite Jamba and they will donate 20% of that purchase to Relay for Life. We appreciate Jamba's generosity so much!

Please come to the Relay for Life if you live in Rexburg. It is at the MHS football field and it starts with "survivors" making a lap at 6 PM. Of course we are relatively new to the cancer world, but I've heard this is a pretty amazing experience.

As I’ve prepared for this Relay, I realized the reality is, LIFE IS one big giant Relay. When one of us gets tired or overwhelmed, it’s ok for someone else to help us and take over for a bit- lift our spirits, give us the energy we need to carry on, and send us on our way. I am SO grateful for the people in our lives, who fill our buckets and support Jace in his OWN Relay for Life. Although as the adult, I don't have all the answers, I do know that some pretty amazing people help me every day, and I'm so grateful they are on my "team."

Bruises

2010-06-06T19:49:00.009-06:00

When Hayden was a toddler, I was afraid people would think we abused him because he was always covered in BRUISES. His full-speed ahead attitude often left him bumped and battered, but he never cared. He just loved “going big.” Hayden also taught Jace to follow the same path of aggressive behavior. They’ve been indoctrinated by their father, their grandfathers, and their uncles that if they weren’t diving after the ball, they weren’t playing. So, as warped as it is, bruises give a sense of pride in our house… “Look at this one!” they’ll say, and then retell how they got it. “Man this one is huge!” and then explain the events leading to it. They both have pretty good stories too. From double broken arms to emergency room visits, we’ve seen our share of “boys being boys.”

You can imagine how difficult it has been then, to watch over the last nine months-- Jace’s pale skin grow baby soft with no evidence of rough play. Don’t get me wrong! As his mom I have loved his smooth legs and soft hands, and I have enjoyed our days of cuddling and book reading, but today I do have terrific news. After nine months of flawless, silky skin, I am happy to report- Jace has been playing hard enough to have a few bruises.

Since his last IV chemo, Jace has been going full-speed not even letting nausea get in his way. He managed an entire day at Lagoon without being carried or pushed, and he loved a weekend at the sand dunes riding four-wheelers and jumping over the edge of the sand hills seeing how far he could go. As people have asked how he’s been doing the last two weeks, my consistent answer has been, “So great.”

This isn’t to say he doesn’t have his difficult moments. Both Hayden and Jace taught me valuable lessons Friday as we were preparing to leave for baseball games. After receiving a heavy dose of oral meds on Thursday, Jace was feeling nauseated and slow going. He complained he felt sick (very normal every day), and I coaxed him to get up and get dressed. He did, and on his way out the door he said, “Mom, will you get the bowl?” This is also a daily request. In my haste, I forgot the bowl but remembered the cooler and umbrella. As I entered the garage, it was immediately obvious that Jace did actually need the bowl. Hayden ran for it, and returned to a very sick little brother. After a few minutes of me holding Jace from behind, his body violently rejecting the one drink of water he took that morning, Hayden looked at me with such sad eyes. He shook his head with complete disgust that Jace has to endure this and offered his own hands to his little best friend- “You ok, bud?” he whispered…and of course Jace’s answer was, “Yes.”

The two boys climbed into the vehicle without thinking, as I assessed the situation for a minute. In my adult brain I clicked over to the idea that Jace wouldn’t feel like going to his baseball game. I prematurely started thinking about where my phone was…call Matt… make arrangements for Hayden a ride... but I think Jace could read my mind. “Mom! I’m ok,” he said. “I want to go.”

So we did. In the tournament, our little men played a total of four games each. Hayden’s team went 4-0, and Hayd hit three over-the-fence homeruns! Go Hayd! Jace’s team went 0-4, and he had the time of his life. He got a few good hits, he struck-out once, he walked once, and he stole a few bases.

Last night Jace proudly revealed a whopping black and blue bruise on his shin. He knew exactly when he received it in the game, but he explained how he successfully tried really hard not to cry. I softly reminded him that it would be ok if he ever needed to cry. He looked at me in disgust and said, “Mom? Over a bruise? Come on!”

Chemo and Blood

2010-05-22T08:24:00.003-06:00

Jace started getting the chemo blues Monday night, asking how many more hours until his treatment Tuesday. He managed it like a champ though, and was happy to see Dr. Hancock and the ladies at Teton Oncology. Jace even attended Hayden’s baseball game Tuesday night after his treatment. Something about the steroids Jace has to take for five days the week of IV chemo makes it difficult for him to sleep though, so he tosses and turns- sweats and aches, and usually ends up in our bed.

Wednesday I was nervous to take him all the way to Salt Lake for the Blood Drive, but he slept most of the way there and all of the way home. We had an amazing experience meeting total strangers who out of the goodness of their hearts organized the Blood Drive in Jace’s name. Thank you PSS, Cindy, Taunya, Brian and everyone else who is making an effort to help us in our journey with this crazy cancer. We know you aren’t strangers anymore.:)

I have to admit that in my memory, I can’t remember ever donating blood. For those of you who know me, it’s not a natural inclination for me to crawl into an enclosed space (the bloodmobile), with multiple people (claustrophobia), and have a needle the size of a straw jammed into my vein. This just isn’t something I would randomly desire to do. So, as I sat there with blood draining, and Jace carefully observing, I rhetorically asked the tech person, “So people just choose to do this, hu?” and then I followed by quietly saying, “Where have I been?”

When they had enough of my blood to fill the bag, they told Jace it was enough to save three people. He quietly listened and nodded, and I couldn’t tell if he was mellow because of the chemo the day before, or if it was a little overwhelming. He did enjoy taking a million pictures of me, as he said it was paybacks for all the pics I’ve snapped of him. Fortunately for you, he doesn’t know how to post pics to this blog yet! ha ha Many unfamiliar people donated blood that day, and we were also blessed to have the support of a few family members and long-time friends who gave up their afternoons to also donate. Over-all it was a huge success

We want to have a blood drive here in Rexburg sometime in June. We’ll let you know as soon as we get it organized. Our new appreciation for this life-saving liquid is immeasurable, as Jace has used his fair share.

When Jace reported to Matt at the end of the day he said, “That one bag of blood mom gave will save three lives!” He was impressed that ‘his’ mom was a contributor. Then very quietly, as he snuggled between us in our bed he whispered, “Do you think when I’m a dad and I’m feeling stronger that I can save three lives?”

My eyes welled with tears and I gently whispered back, “You already have.”

Blood Drive

2010-05-14T08:13:00.003-06:00

On several occasions, donated blood has saved Jace. There is a company out of Salt Lake who is honoring Jace and sponsoring a Blood Drive in his name next week, May 19th. Jace and I are actually going to attend, so I can donate (my A Positive blood!). If you are in the Salt Lake area, we would love your support in filling the blood bank in that Salt Lake area. Here is the information:

PSS
BLOOD DRIVE

3044 South 1030 West – Bloodmobile (Parking Lot)

Wednesday, May 19, 2010
10:00 AM – 3:00 PM
To schedule your appointment, or for more information, contact Cindy Lee @ (801) 977-0848
If you have Eligibility Questions, Please Call 1-866-236-3276
Donor ID is required

Leave me a comment if you have any questions. I would really love to see some familiar faces! You'll notice you have to SCHEDULE an appointment, so if you think you can make it, call the number and get a time. Jace is worried that I'll be too big of a wimp to actually go through with it, but I keep telling him I'm really tough. Then I show him my muscles and he laughs. I'm excited for him to see how those bags of blood that magically appeared in his hospital room- came to be. For once, he won't be the one with the needle stuck in him either. Yay Jace!

The Blanket

2010-05-09T06:52:00.001-06:00

Last Saturday on our way to the boys’ games, we were on I-15 traveling at about 75 mph. Out of nowhere Matt yelled, “OH MY GOSH! That car just flipped!” As I looked up I noticed a car still flipping into the field to the right of us. Pulling on my shoes I dialed 911, Matt pulled over, and we hit the ground running toward a family in their crushed compact car. Every window was gone, glass was everywhere, the airbags were deployed in full force, and a child inside was screaming. Looking back at my conversation with the 911 operator, I wonder how she could even understand me. Luckily they are trained to understand people under duress. As the dust settled we were amazed to find this little family of mom and dad and two kids (15 yrs & 8 yrs), all wearing seatbelts, banged up, cut, and terrified- but mostly FINE! By the time the ambulance got there, Matt had the big cuts wrapped, Shawn & Melissa (other witnesses to the accident) took care of the 8 year old and the dad, while Tyler, the 15 year old driver (with a permit), and I became best friends. His mom was hurt, so it instantly became my role to help this cute little teenager who was in shock and disbelief, to settle down and breath.

At one point in the mayhem, I remembered I had my own kids sitting in the vehicles on the side of the road. I looked up, and Jace was holding his blanket up where I could see it, offering it to this family. I ran to him and grabbed it, and rushed back to wrap it around Tyler. The wind bitterly cut through the wrecked car and whipped around us all as we found our teeth chattering, bodies shaking, and fingers freezing.

One by one each wreck victim disappeared into the ambulance, and our work was over. We knew their first names only, and they never knew ours. As I looked at the wrecked car, I realized the mom would want her purse, so I ran back and found it under shards of glass in the back seat. I also found the 8 yr. old’s baseball hat, so I tucked it in the purse and silently prayed the little boy could play baseball again soon. Handing off the purse, we got the ‘go ahead’ from the police to leave. Then, I thought about Jace’s blanket and turned to ask him if he wanted me to go get it out of the ambulance. He said, “NO. He needs it a lot worse than me!”
It was surreal climbing into our own vehicle and driving away wondering if they really were ok. Then I thought about Jace. He was alone in our car for most of the action, because Hayden was riding in the car ahead of us with friends. Jace did just the right things by staying there, not being scared himself, and then going beyond and thinking of something he could do. He could offer HIS blanket.

I thought of all the times in the last eight months a blanket has helped Jace through a hard day. It was quite a sacrifice for him really, but he didn’t mind at all. He was willing to part with an item of comfort, because he saw a need in someone else. I’m pretty sure he learned that from all of you blanket makers out there who have taught by example and lovingly given to him.

We were shocked when our doorbell rang one night, and there was the family! They had watched us drive away and got our license plate number- then investigated to find us. They were all on their feet, they all had smiles, and they were holding THE blanket. I screamed with happiness and one by one hugged each person. I told them they looked different without glass in their eyelashes! We shared our own versions of the wreck that could have been awful- and eventually we gravitated to Jace’s fuzzy head. They were surprised to learn about his cancer. When Tyler learned it was Jace’s blanket that warmed him on that icy day, he shared a look of understanding with me. He thanked Jace for letting him borrow it, and the two became instant friends.

Thank goodness for blankets.

Combat Gear

2010-04-26T08:57:00.003-06:00

It’s been 10 days since I’ve written. If I had posted 8 days ago, the title of my post would have been “Striking Out.” If I had written 5 days ago- maybe “I Hate Chemo,” and after games on Saturday it would have been “Anxiety,” but this morning I’m going to sum it all up with the exclusive brand name, Combat Gear.

We bought the expensive protective shirt to cover Jace’s Port-a-Cath that is located on his left ribs. If you can picture him batting, the Port faces the pitcher…and in “KID PITCH” baseball, this is pretty daunting. The Combat Gear we bought is an amazing, high quality padded shirt designed to protect the person wearing it. The problem is, Jace is SO finicky about his clothing. Right before his first game last week, he felt the shirt was restricting his movement. He was hot, and the shirt was cumbersome and annoying. He begged to take it off. After having the “parent talk” with him about how he “might get hit, and if he does- it will really hurt,” but “it is his decision,” he lost no time in stripping off the Combat Gear and replacing his jersey without it. It was a tough call as a parent to watch him remove the gear. We have been told by our doctors that it won’t really do any damage to the Port if he does get hit there, as it is securely placed under the skin. The worst that can happen is it will just leave a bruise, causing extra pain.

Extra pain. Hmmm. We’ve about decided Jace doesn’t care about pain anymore. He again and again endures things that would make grown men cry. So, I guess when Matt and I say “extra pain,” Jace shrugs his shoulders and says, “Big deal.” I’m just really wishing there was such an invention as Combat Gear for a mother’s heart.

Like I hinted, after four official games Jace’s batting record is less than desirable, and his chemo treatment last Tuesday knocked him down worse than we planned. By Thursday morning he was nearly as sick as he was in the heart of his frequent treatments. Saturday we wondered how he would play in his baseball games at all, but like the trooper he is, he showed up, gave his best, and collapsed at the end of the day. Matt carried him to bed.

My awesome friend, Melissa gave a talk in church Sunday. She gave an analogy that I loved using baseball. She said that while watching our sons’ games Saturday she noticed again and again the coach coax the runner off the base for a lead. While the opposing pitcher had the ball, the coach would yell to the runner, “More, more! I got you.” This meant, you can lead off more than you are! I will protect you- should the pitcher try to pick you off…and if the pitcher turned to throw, the coach would yell, “BACK!” This is often very uncomfortable for our boys, because the base is so much safer for them than half-way up the baseline. Melissa likened this to giving MORE in life. It is often uncomfortable to improve (advance), but very rewarding in the end. In other words, we can’t be scared! Our Heavenly Father will protect us if we just listen to Him- and just like the coach, He does NOT want us to get “OUT.”

(Hayden looking to steal 3rd)

So this week our family is working through what monthly chemo treatments will be like for Jace. Every time someone (who doesn’t read the blog) asks if he’s finished with chemotherapy, they are surprised when we say he will have monthly treatments for 2 ½ more years. In fact, the other day in a store, the clerk was helping me find something. Jace was walking next to me, and his legs were getting tired. He lifted his arms up to tell me he needed carried. I automatically picked him up. The clerk looked at me in surprise and said outloud, “I’m sorry, but he is too old for you to carry!” I just smiled and thought to myself, if she only knew. We also left the store…before she wished she had Combat Gear. :)

Joshua 1:9

2010-04-16T13:45:00.002-06:00

“Have I not commanded thee? Be strong and of good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest.”

That’s our favorite scripture this week, brought to our attention on a signed bat and ball from baseball player, Christian Colonel. (THANK you Christian!) The tubular package appeared magically at the door, and as its contents spilled out, Jace and Hayden discovered this phrase penned on the genuine, “Christian Colonel” Louisville Slugger:

“To Jace, Keep the Faith! I’m your fan, Christian Colonel, Joshua 1:9”

We immediately looked up the scripture, and the boys took turns swinging the awesome gift. The scripture hit me hard, and as Hayden handed the bat over to Jace, they noticed my tears. “Mom! Are you crying?”

“Nope,” I said. “Not crying.”

“Then why are your eyes wet?”

It’s been almost a source of embarrassment for me over the last months, because now more than ever before I realize the average person doesn’t cry nearly as much as me. I WISH I didn’t cry so easily! It’s SO humiliating sometimes. I find it interesting though that at different times in our lives we “get” different things out of scriptures. On most days, I would read this scripture and see “Be strong…” or “…be not afraid…” but on this particular morning, I read “..neither be thou dismayed.” It jolted me into the realization that I don’t need to be dismayed at the strength I now see in Jace. In the last few weeks we have seen him progress so rapidly; I’ve truly been shocked by our Iron Man. Three weeks ago he couldn’t lift a basketball over his head. Last weekend he was playing “lightening.” Three weeks ago he could barely run. Monday he ran from home plate to 2nd base and made it “SAFE!” Yep, that’s right folks. In his scrimmage game Monday, Jace hit a double! (Ok, he probably hit a single, but made it to 2nd on an error). He was also *beaned* while batting, but you’ll all be impressed that I didn’t freak out, and Jace didn’t complain a bit! He still even has the bruise on his arm!

It IS time once again for that dreaded chemo though. Jace will be on steroids next week, and receive Vincristine in his port. No LP this month though- so no hospital visit. Yay. Jace is just so glad his chemo is at the first of the week, so he can feel better by the time he has another game. We’ve also seen a sprouting of peach fuzz on his cute little head. We’re not sure if it’s chemo hair or real hair, so we’ll keep you posted. It looks like it is brown in places, but in other places it is bright WHITE!

Class photos were this week, but since Jace isn’t going to school, he had mixed emotions about being in the photo. He wondered if the other kids would think it was weird of him to show up for the picture. We assured him he is still a member of the class, and the kids really want to see him. As he brushed his teeth and groomed for the picture that morning, he looked in the mirror at his weird hair. He asked, “Do you think I could wear a hat in the picture mom?” I told him that I thought he could if he wanted to- but I reminded him that he was a good-looking kid with or without hair. On our way out the door I asked if he wanted me to grab a hat. He replied, “Nah. I’m ok.”

And he is. The end of Joshua 1:9 reads, “The Lord thy God is with thee whithersoever thou goest.” I know this is true. I feel it every day. In essence we can “be strong.” We can “have courage,” and we can “be not afraid” because the Lord IS with us. Once again I’ve humbly learned, in our world, there is really no room for dismay.

The Scooter

2010-04-07T09:35:00.005-06:00

Thank you for the support and concern this last week. By complaining just a little too much, we’ve been the recipients of beautiful flowers, movie tickets, packages in the mail, phone calls, texts, and 56 comments. I think I may just vent a little more often!:) (Kidding!) Actually, I think the best thing for me to do with this blog is to take it one day at a time. It is nice to know some of you who are checking it, and I soooo appreciate all of the love I’ve felt. I do need to assure you though, that I really am ok. Jace has had an awesome week, and I can’t wait to tell you about it.
Thursday, April 1st, we went for a few days to Hayden’s baseball tournament in Mesquite, Nevada, and St. George, Utah. We packed shorts and t-shirts and hoped for warm weather, so we were a little concerned on our way when there was still snow in Southern Utah…but no worries! Mesquite was beautiful, and the baseball diamonds were amazing. It wasn’t hot, but it certainly wasn’t cold. Hayden’s team went 2-2, but we all decided a bad day of baseball in the sunshine is way better than a good day in the snow!

The best investment we made the entire trip was a $36 razor scooter for Jace. He still doesn’t have his legs, so the scooter allowed him to keep up with us, without having to be carried. He buzzed around the sidewalks on it, and for the first time in a LONG time, he felt like the "old" Jace. If you don’t know Jace personally, let me explain that pre-cancer, Jace loved to run! His favorite part of baseball last year was racing around the bases when the games were over. He would even challenge older kids to race him, and sometimes he would win. So, it has been hard on him to be the slow one, or the one who even has to be carried. The scooter is his current tender mercy. It was pretty funny how if he started going too fast, you could hear a collective gasp from all of the moms at the field! My heart was so scared for him to get hurt, but at the same time I knew how important it was for his own psyche to feel that wind in his face and taste how sweet life can be.

The other great investment we made was an awesome, new HAT to cover Jace’s head. (actually, Grandma bought the hat for him and stuffed the pocket with money...what a Grandma!) The only one of us who didn’t get sunburned was Jace, so I was glad for that. We were diligent with his pasty white skin- to keep it covered with sunscreen and the HAT. By the 2nd game on the first day, Jace was worn out. This is a picture of him buried in the jackets on a chair. He slept the entire 2nd game. The same was true the next day as Matt carried him to the car at the end of the night.

We also met another cancer family at the baseball field. Ronni (the mom) introduced herself to me after seeing my little cancer babe beebopping around. She tearfully explained that her Chrissy was diagnosed at 7 years old with Leukemia, and fought for 20 months. She died at 9 years old. Ronni and I hugged like we were long-lost soulmates, and I felt her anguish as she told me about her amazing daughter. Together we talked about how medicine really has improved over the last five years, and how great Jace looks. I appreciated her hug, and I silently grieved her earthly loss.
It was a good reminder to appreciate every minute I have. I looked around at my two incredible sons, my strong, amazing husband, and the baseball friends we enjoy so much, and I said a prayer of thanks. I am convinced that life is difficult, but I know Heavenly Father has sent us so many things- and people- to help us through it.

So, though difficult-- life is good. We felt the sun in our faces, and we came home to a loving community and a warm, beautiful home. With the aid of multiple positive resources, the Leatham fam feels blessed and loved. More specifically, Jace is doing well, and although he's trying to give his mom a heart attack, he once again knows the feeling of “being fast.”

Maintenance

2010-03-29T09:41:00.001-06:00

I apologize for the long space between posts this time. The truth is, I’m tired of cancer- and I’m only the MOM! It makes me weary. I’m exhausted by the way it has wrecked life as we knew it, and I’m tired of being “strong.” I’m actually really tired of even talking about it. It’s interesting how six months ago I thought, maybe if I learn enough, and study enough, and experience enough with Jace, then someday it will be easier, and my knowledge will serve a purpose. Right now, I am longing for the day when the word cancer doesn’t control everything. Someone told me cancer is the disease of love, because everyone around the cancer patient is called on to serve so “lovingly.” Until JACE can call it the disease of love, I have real issues with that theory.

Despite my negative attitude, as of Monday at Primary Children’s Hospital, Jace is officially in the maintenance phase of his treatments. He received a LP and chemo in his port. Everything went fine, and although Jace has been weak and sick this week, we think he will continue to improve daily before his next treatment. Jace also received several prescriptions for daily oral meds. On different days of the week, Jace will take different combinations of medicines. Actually let me explain our treatment calendar for the next 2 ½ years.

To my best knowledge (I’ve been known to be wrong) this is what Jace is looking forward to:

*Once a month chemo treatments (Vincristine) in his port. *Once every 3 months hospital visits with anesthesia and LP. *Five days monthly steroid treatments. *Daily oral meds ranging from 3 pills on certain days up to 12 or 13, and *continued caution with sickness, fevers, and exposure to illness.

As I said, this will continue for 2 ½ more years. Jace is 7 years old now. This will continue until he’s 10. But don’t worry, they’ve told us. IF the cancer COMES BACK, it should manifest again within 6 months of the end of his treatments. hmmmmm. I can’t even comment on that last concept.

Last night I was discussing with family members close to me if I should continue writing posts for the blog. I admitted that it takes a little energy (of which I’m lacking), and I don’t get much feedback. Some suggested that I would let down the readers. My reaction is that I don’t even know who the readers are. Others suggested that maybe since Jace is in maintenance, things are different and people won’t be reading anyway. Any thoughts?

I’m guest speaking this week to a group of students. I’m going to tell them about the lessons I’ve learned from enduring something very difficult. BELIEVE me, the lessons are there. The greatest lesson of all for me right now is one in humility.

One of my favorite quotes for a while is this: “Self-searching is the means by which we bring new vision, action, and grace to bear upon the dark and negative side of our natures. With it comes the development of that kind of humility that makes it possible for us to receive God's help. ... We find that bit by bit we can discard the old life-the one that did not work-for a new life that can and does work under conditions whatever” (by anonymous author). I’ve said it before, but I wish so badly there was a different way for me to receive said humility-- but I’m still working on the new life and dreaming of my ability to accept our “new” conditions.

Many parents of cancer kids have told me that things get easier with time. I’ve been exposed to so many people who have fought this very fight, and I know it is a global challenge for thousands. But I’m sitting here alone typing right now, and the truth is, I feel quite isolated. People have even said the words, “Been there, done that,” but when they say those words I think in my mind—no you haven’t—because you aren’t Jace’s mom, and you most definitely are NOT Jace.

But Jace IS in maintenance, and for that we are grateful. His treatments will slow down, and we will continue to watch him hit a few baseballs. This week he could barely run at all, so he decided he’ll just have to start hitting it “REALLY FAR,” so he doesn’t get out— and again, Jace inspires with his positive attitude. Do you think his mom could stand another lesson or two?

A Positive

2010-03-17T14:12:00.003-06:00

We had a great weekend! Hayden’s basketball team played in a March Madness tournament, and we were able to go as a family and watch him Friday night. Jace felt well enough to go to baseball practice Saturday morning too, and after watching Hayden’s team take the championship that afternoon (Go Madison!), we went bowling and playing at the Rex. It felt surreal that we were enjoying one activity after another, and Jace still had the stamina to keep going. When he asked Matt to carry him out of the Rex Saturday night though, I hoped he hadn’t over-done it. He said his legs “hurt bad!”

Sunday morning Jace could barely walk, and Monday his CBC showed why. He was extremely anemic again and needed ANOTHER blood transfusion. I was actually shocked at how low his HCT was, because he didn’t show signs of it, other than his legs hurting.

So Monday, Jace spent the better part of the day at the doctor’s office and then the hospital for his blood draw, cross, and type matching. They sent him home with two identification bracelets and told him to keep them on until he received his blood the next day. I had to laugh when we pulled up to Hayden’s baseball practice, and Jace ripped off the bracelets before he got out to play with “the guys.” He said, “I can’t wear these! Don’t take any pictures mom, or the hospital will be mad at me.” A few buddies met him at the practice, and the healing power of being “one of the guys” prevailed. Jace came home from practice with muddy knees from falling so much, and he was worn out, but he didn’t complain. He had the time of his life throwing, catching, and hitting a baseball. No one would have guessed his two hours at the park were sandwiched between two days in the hospital.

The blood transfusion went fine. Jace was so full of energy last night; he tried to wrestle everyone who came to our house! (Thanks Dayton, Dylan, Dawson, Reagan, Carson, Skye, Daisy, Gabby, Krew, Brynlee, Luke, and J’dee for putting up with him!) Jace’s blood type is A Positive, and as I watched the bag drain into his body yesterday, with the giant A on the side, I meditated on what the A might secretly (in Amy world) mean. Lots of words came to mind, but I finally decided that it just stands for itself, and someone out there with *A Positive* blood saved our little boy again…...our amazing *A Positive* Jace.

( Jace loves HOT and SPICY food now. )

Six Months Later

2010-03-11T13:28:00.002-07:00

My mind is swirling with things to write about today like: low numbers, treatment, maintenance, baseball, spring, home-school, 600 books read, etc. But the theme of today has to be our SIX month anniversary. I know I’ve said it before, but if anyone would have told me one year ago what my next year would bring, I would have crawled into bed and never risen. Fortunately life doesn’t work like that. Fortunately we are given days of trials instead of entire months at a time- and those days are filled with resources that force us to survive— resources like prayer, faith, friendship, and hope. Surprisingly those days add up too, and six months later I’m shocked at the very raw reality that life goes on, and although unpredictable, the enduring characteristic above anything else is LOVE. After all, cancer wouldn’t scare us so much if we didn’t love those it plagues, and we wouldn’t empathize with others if we didn’t love our own so much.

Last night I watched Jace try to run the bases at practice. His body is so different than it was last spring. His legs and feet are hurting him, and he finds it difficult to stay on them for long periods of time. Hayden and I shared a knowing glance, as even he realized Jace is slower and weaker. It’s an interesting position for both boys- one of catching up- and even Matt helped me have confidence that Jace will grow stronger. But my hope is that no matter how slow or weak Jace is physically, his battle will always stand for more. My brain tells me all the rational things for which I should be grateful: Jace gets to play baseball this spring. Jace is setting an example of endurance and mental strength. Jace has taught many of us important life lessons about courage and faith…and on and on…but I recognize my own worldly weakness when I admit that this morning I also prayed that Jace will be able to run again—like he used to run.

My wise Aunt Judy who has battled cancer off and on over the years described perfectly one emotional issue I’ve been feeling lately. She said, “Nobody likes to be pitied.” It’s not a pretty position. As I sat at practice last night I found myself wanting to talk about what Jace used to be able to do, and I realized that conversation might ask for pity. So today, our “Six Months Later Jace” is fighting the good fight. Even with his bald head and low numbers, he is trying to run those bases like the fastest runner alive- and there is no way anyone can pity that.

I Prefer Pink

2010-03-05T08:02:00.001-07:00

Last weekend I noticed how pale Jace looked. His face and head were almost transparent, and he was a little weaker than usual. My worries were confirmed as we received chemo Monday. His Red Blood Cell count was very low, and he needed another transfusion. For some reason my mind freaks out when I know he needs blood. I’m not sure if it goes back to a primitive instinct that blood is life, but whatever the cause, this scared me again…and I was just feeling so strong!!

Because of the necessary precautions taken with donated blood, and making sure it is appropriate for little cancer babes, MMH didn’t have the blood ready until Tuesday morning. We spent that entire day at the hospital watching the bright red life drip into his body, and I prayed silently a thankful prayer for whoever donated that particular bag. I’ve never realized the importance of donating blood until now, but if you ever have- THANK YOU. By about 4 o’clock, Jace’s cheeks started to have a little color, and his smile was a little more genuine. We left the hospital only to proceed to his chemo treatment which he has received now four days in a row.

This Friday morning as I write, my over-whelming feeling is one of gratitude. All week long Jace said cute things that reaffirmed his positive attitude. As soon as we would walk out of chemo treatments, almost every day he would say something like, “I did it!” or “I made it through another day.” He really is mature about the whole treatment thing. This isn’t to say he hasn’t emotionally regressed the last six months, and Matt and I are seeing we might have some very unique parenting challenges ahead of us. Many of you who knew Jace pre-cancer know he was intense anyway, but this has heightened, and we find he is now very emotionally charged in every way. I’ve expressed to some of you my feelings that if it were just “CANCER” it would be big enough…but there are SOOOO many other issues that come WITH cancer—emotions, fear, life changes, money, insurance, support, opinions, etc. I’m just grateful for the resources and people in our lives who are making things easier. I HATE that something so big had to happen to my son to drive me to such humility and reliance on our Heavenly Father—but so many times my comfort comes from knowing that He hears and answers prayers.

Jace just crawled out of our bed and found me on the couch typing. He has a difficult time walking in the mornings, and the first thing he said was, “Where is the bowl?” Although he hasn’t been especially nauseated the last month, it’s never far from his mind. Normally I love the color white. It’s so pure and beautiful. There are many wonderful WHITE things, like warm hospital blankets and clean, sterile hospital walls. But this morning as I look at my cute Jace, I’m thankful he isn’t transparent. This morning I’m grateful his cheeks are pink.

...and Wednesday and Thursday

2010-02-25T18:53:00.000-07:00

Jace reeeeally loves his nurses. He hangs on their every word. Often he reminds me at home, “But, Linda said we should…” or “Leslie did it this way…” or “Becky thinks…” So it won’t surprise you that the ladies at Teton Oncology made MY day when they all agreed that we should MOST definitely wrap Jace in bubble wrap if he is going to play baseball! Linda (and Brenda and Christy) even brought some in the room while Jace was receiving chemo, and teased him by telling him he had to be covered from head to toe. He just giggled and rolled his eyes though. I could see that he was NOT convinced at all—as his eyes silently said, “You really don’t know my dad, do you?” I think somewhere in the conversation Matt or Jace suggested we ask Dr. Hancock, and as if by magic the Doc himself appeared in the room. Darn! That’s all I needed was a rational, practical, man’s opinion. I guess Jace doesn’t have to wear bubble wrap after all.

So we made it through a tough chemo week, and enjoyed seeing a few friends at the office as well. Last night Jace proudly announced, “After chemo tomorrow, I get the WHOLE weekend off!”

Enduring Monday and Tuesday

2010-02-24T09:19:00.000-07:00

At the hospital:

During Chemotherapy:

(Hayden providing entertainment...

We sure love that goofy brother, don't we Jace?)

Seventh-Inning Stretch

2010-02-19T09:01:00.002-07:00

You are familiar with the term, “Seventh-Inning Stretch,” right? As I’ve watched Jace this week and looked ahead for the final “innings” to arrive, “a good stretch” is the best way I know to describe what his week has been like. After enduring an uncomfortable and tense competition of good cells overtaking bad cells, we are all stretching this week-- regrouping, and waiting to watch the victory unfold. We are officially in Cycle 5 (of 6), and we are very excited to finish it and start Maintenance.

Monday, February 22, Jace will go to the hospital again. He will receive a Lumbar Puncture, and then he will go to the office to receive a series of new meds. After Monday he will return every day for the rest of the week for chemo. The same thing will proceed the next week.

Luckily for us, Jace loves his team. His nurses, Dr. Hancock, and the staff at Teton Oncology are the highlight of his week, and he looks forward to seeing them. Jace has also made a new friend with cancer, Mark Steiner. Last night Mark and Jenny solidified Jace’s favorite MLB team to the Red Sox by bringing him a new hat and shirt. Not only are we grateful for new friends, but we are grateful Jace has someone else who really understands what he is feeling. (Thanks for the photo, Jenny!)

We signed Jace up to play baseball, though Matt and I are fighting about appropriate protective gear. I’m thinking Jace should constantly wear catcher’s equipment. You know, the whole enchilada…covering him from head to toe. Matt is saying we can just get some padded Under Armor for his chest (covering his port), and unfortunately for me, Jace is siding with his dad on this one. Apparently he doesn’t want to be the only boy in the field looking like an armadillo…and Matt assures Jace they WILL win this fight. Man! (literally) I hate being outnumbered.

Friday

2010-02-12T15:49:00.000-07:00

Jace just sat on the couch and went through the Valentines from his class. One by one he pulled them from the giant, decorated envelope and read every word. I had to take a picture, because his smile revealed how happy this made him. As he read the sweet messages from his friends I thought about that great concept, synergy. Each Valentine was important to him, and even the generic messages on them were written just for him. Jace has also been receiving sweet Secret Valentines from someone, and treats from the neighbors last night cemented the idea that we are really LOVED this Valentine’s Day.

After having a few meltdowns Wednesday about “hating being sick” and “wishing he was somebody else,” he awoke Thursday a different kid. He felt great. His fever was gone, and he was happy. Now it’s Friday, and although we’ve been cautioned to stay home (low numbers), he is much better than my last post. All I can say is Thank Goodness It’s Friday! Did you all say an extra prayer for us?

Since Saturday

2010-02-10T09:05:00.002-07:00

This is how Jace has felt since Saturday. His lower back hurts, his legs are weak, and he doesn't have much strength. He was on steroids all of last week, so we aren't sure if they are masking an infection, but since he's off them now, time will tell. Luckily he didn't have any chemo Monday. Matt carried him INTO and OUT of the doctor's office, and we've been mostly holding him since.

The upside is that Jace has been able to spend a lot of time reading and being read to. I haven't explained Jace's school situation, so maybe today is a good day to do this. As you might remember, Jace hasn't been in school since September 4. This means he went to about two weeks of first grade. As our luck would have it, my Aunt Rai retired from teaching Elementary School in the Spring of 09. Her expertise and willingness to tutor both Jace and I have made it possible for us to home-school him, and his current IRI revealed he is right on track. I am shocked that he has been able to learn how to fluently read while undergoing a battle for his life, but just like with everything else our little Iron Man is fighting the good fight. Early in her visits, Aunt Rai challenged Jace to try to read 100 books. She made a cute chart and brought stickers to mark the count. Last night he finished his FIFTH chart. That's 500 books we have read to him or he has read to us. We are grateful for friends and neighbors who are loaning us books, and we look forward to seeing how many books he can read by the end of the school year.

So, with the bad days come the good. This morning I was reading on the couch when Jace awoke. He walked gingerly out of the bedroom, took my hand, and lead me back to bed. I held him for another hour, caressing his legs and arms and telling him he will feel better soon. I believe it too. Again and again he has continued to bounce back after difficult days, and today will be no exception. He's eating spaghetti right now (his latest craving), and when I finish typing we are going to play Uno. Five months down. We can do it.

The Invincible Iron Man

2010-02-02T08:27:00.002-07:00

As I looked at Jace during his chemo treatment yesterday, I noticed the logo on the T-shirt he wore said, "The Invincible Iron Man." In so many ways, Jace's nickname fits.

Saturday, Jace wanted to go in to Hayden’s baseball practice (Yes, in Idaho we practice baseball in the gym until April). As he longingly looked at the batting cage, the coaches talked him into trying his hand at bat. I stood in the shadows afraid and nervous, but watched as Matt and Corey helped him find a helmet. I knew his arms and legs were weak, and his energy was short lived, so I hoped he wasn’t disappointed with his own ability…but I wished for the best.

Would you believe, our little Iron Man started CRANKING the ball? Hit after hit, we watched him connect, and we listened to the beautiful sound of a baseball hitting a big barrel. As I tried to hide my tears, Hayden asked “Why are you crying? Are you scared he is going to get hurt or something?”

I didn’t know how to explain my emotions—which after a few days thought I’d say were the culmination of many fears, hopes, and worries assuaged with the ringing of the bat and ball. Awww, the healing power of baseball. I’ve always known it was my favorite sport. To Hayden I replied, “I’m just happy.”

As Jace finished, he trotted back to us across the gym. Although he looked more like a young colt horse, running for the first time, the smile across his face was priceless. “Did you see that?!” he beamed.

Yes, Jace. We saw you prove once again that, where there is a will, there IS a way… and it was beautiful.

Frozen

2010-01-26T04:08:00.002-07:00

In addition to the frozen weather we are feeling outside, Jace now has to take frozen popsicles to his treatments. During this 4th cycle of chemotherapy Jace receives a slow push of medicine in his port for which he has to have ice in his mouth during the entire time it is administered. I’m not a medical brainiac, but it has to do with not allowing blood into the capillaries of his mouth and throat while he receives the med into his veins. Otherwise, it is so brutal it would cause mouth sores the size of quarters. Have you ever tried to eat something cold for 15 minutes straight? Yesterday it took a bit longer than that because his port was a little positional and didn’t want to receive the fluid. By the end, Jace was near tears, but trying valiantly to keep chewing on the ice (the popsicles were making him gag, so we finally tried a cup of just plain crushed ice.) He was sick to his stomach, his whole body ached, and his mouth was frozen. Sometimes watching Jace be so brave is almost more than I can endure.

Since last Monday, Jace received PEG shots Thursday, and chemo again yesterday. Although we had three pretty good weeks before the 18th, the last week has been hard on our Iron Man. We met a guy at the doctor’s office who has been fighting Cancer, and he shared his positive attitude. He said, “I don’t have bad days. I just have good days, and better days.” This morning at 4 AM after helping Jace throw-up, cry a little, and climb into our bed to fall back asleep, I’m having a hard time saying yesterday was even a good day. I’m practicing the words though, so they sound convincing when Jace awakes. His legs are also really aching, which we know is a side effect of the Vincristine, and more often than not, he needs his dad to carry him out of chemo.

But, living in Idaho has prepared us well for the kind of deep freeze that makes the bones ache and the spirit wish for warmer days. We look optimistically toward spring when the snow melts, and Jace doesn’t have to freeze his mouth every week. We have been talking with him about spring things too… like baseball and green grass and warmth. He told us Sunday, “I really need to practice baseball. I don’t know if I can even catch any more.” Matt and Hayden assured him that he’s a natural, and he’ll be just fine. Despite the cold weather, warmer days are coming. I can feel them. Do I sound convincing?

Mostly Photos

2010-01-18T18:12:00.001-07:00

Jace's numbers were high enough to receive treatment this morning, so we were back at it. This time we were able to stay in Rexburg, so the ride home was much better. I motivated myself to pull out the laptop just now by remembering that a picture says a thousand words. I feel like I always say the same things after treatments, so I'll just post the photos and let them speak for themselves.

Taking Jace back for his Lumbar Puncture (If I take pictures, then I forget to cry...He's awake and nervous, so I hate when he has to go without us!)

Jace had a great appetite when he awoke! He actually finished that whole plate of pancakes.

On our way to Dr. Hancock's...to receive two more meds through his port...

Four months down...we can do it.

Numbers

2010-01-12T07:54:00.000-07:00

We don’t understand numbers yet. Our brains tell us Jace’s numbers should continually improve each day until he’s hit with another dose of chemo…but we’ve found this isn’t true. Thursday, Jan 7th, Jace’s numbers were pretty good. His ANC was amazing at 1.6, and we thought Jace would be able to enjoy an amazing weekend with no worries! He was scheduled for a Lumbar Puncture, Vincristine, and Doxorubicin, but by Monday morning at Primary Children’s Hospital his ANC had dropped to .5, so they sent us home without treatment. It’s interesting how quickly the cells and counts can change.

We will resume treatment as soon as these numbers come up, and we think we’ll be able to stay in Rexburg. Jace really does love both of his doctors though. It’s tender how genuinely he has taken to both Dr. Barnette and Dr. Hancock. Matt and I appreciate them and Joann, our social worker and advocate at PCMC too. They are all awesome. Through this entire experience our family has grown an appreciation for people who are amazing at what they do. I think it is common for the general population to be OK at their jobs/careers…but we’ve been so blessed to be treated and helped by the elite. It inspires me to be better, and it gives me so much hope for Jace’s future.

We took Hayden to the hospital with us this time, and it was a good decision. Our family felt complete as we charged those hospital doors together. Hayden was patient, loving and kind, even though he had to stay in the waiting rooms the entire time. He did homework, played on the computer, and watched people-- and I couldn’t help but smile as Jace “taught” Hayden how to make his wishes in the water outside the hospital doors. When we texted home and told everyone we weren’t getting treatment, someone asked, “Is that a good thing or a bad thing?”

My reply was that it was just a thing. Just life. We had a good weekend, and we were together—not to mention that Jace was happy for another few days of peace.

(By the elevators at PCMC--Jace showing Hayden which fish is his favorite)

Holiday Hoops and Heroes

2010-01-08T07:26:00.000-07:00

For many years my sons have looked up to the stars on the Madison Basketball court. Hours in the gym also facilitated their love of basketball, and sitting on the end of the bench while Grandpa helped coach didn’t hurt. Many heroes emerged too-- high school boys and coaches taking care of Hayden and Jace while I was coaching cheerleading. I’ve always heard it takes a community to raise a child. I guess things haven’t changed. Dozens of former players, coaches, and friends from Madison, Sugar City, and Rigby High gathered to burn a few holiday calories and to play in the spirit of giving. It doesn’t surprise me that this group of athletes came to our aid…and they once again set a good example for our sons. As I sit here looking at the photos of the participating teams, I see former students and friends… Matt was invited to play…and my brothers and their friends. I see so many people we have grown to love over the years. Thank you Todd and Suzie Holman, for organizing such a great event! It also seems fitting that two former Madison Cheerleaders put together a nice photo album for Jace. Count us in for helping with the Holiday Hoops for next year…and the next. Who knows? Maybe someday Hayden and Jace can even play. Thank you, thank you “hooping” heroes. You will always be stars to our family.

Not Gonna Miss Ya-- 2009

2010-01-03T21:52:00.000-07:00

I can’t lie. I’m glad it’s gone. Maybe someday I’ll look back on lessons learned, but not today. We are moving on. The good news is Jace has had his best week yet. Since his chemo treatment December 28th, Jace hasn’t been very sick at all. His new anti-nausea medicine is working (Thank you Dr. Hancock!), and he has eaten normally for a week. Jace also had high enough numbers to get out of the house a little.

His hair was getting bad again though- fuzzy and stringy, so we had our own head shaving party. We decided not to put the whole gang through the misery this time. Although Matt and Hayden literally shaved their heads with a razor, Jace didn’t have to. It took about one minute to whisk off the hair he still had, and his scalp is baby smooth.

We have a week of peace ahead of us, and then we’ll be back at Primary Children’s Hospital. We are FINISHED with phase #3, and we are ready for #4. It’s been almost 4 months since Jace was first diagnosed, and 3 ½ months ago I didn’t know we’d make it this far. Look at us now—actually, look at Jace now. Isn't he cute? Here we go… 2010.

What Cancer Cannot Do

2009-12-25T21:52:00.001-07:00

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

2009-12-17T15:46:00.000-07:00

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

2009-12-13T16:37:00.002-07:00

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

2009-12-06T20:31:00.004-07:00

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

2009-12-01T09:35:00.001-07:00

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

2009-11-26T09:42:00.000-07:00

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

2009-11-22T20:36:00.003-07:00

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"

2009-11-18T11:16:00.001-07:00

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

2009-11-14T21:34:00.003-07:00

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

2009-11-11T08:06:00.001-07:00

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

2009-11-08T20:59:00.000-07:00

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

2009-11-04T11:25:00.001-07:00

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

2009-11-01T20:56:00.002-07:00

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

2009-10-30T21:08:00.002-06:00

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

2009-10-29T08:00:00.002-06:00

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

2009-10-26T18:30:00.001-06:00

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

2009-10-24T22:20:00.003-06:00

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

2009-10-23T11:53:00.003-06:00

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

2009-10-21T12:29:00.004-06:00

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

2009-10-18T20:57:00.000-06:00

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

2009-10-17T17:38:00.003-06:00

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

2009-10-16T08:57:00.000-06:00

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

2009-10-15T10:06:00.000-06:00

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:

"Never Alone"

2009-10-14T16:58:00.003-06:00

Initial results show an infection. Jace’s dose of antibiotics yesterday and today should help. I’m so glad we caught it soon. We’ve been in Teton Oncology and MMH Emergency Short Stay again today to receive more tests. I’ve been really trying to keep this blog about Jace, but I have to admit that today, I’m on the edge of wallowing again. I also received a big, fat shot in my hip today, and I had to wear a mask for the better part of the morning while my antibiotics kicked in. Again, this is nothing compared to our Jace—and he actually giggled a bit when I told him I cried when I received the needle.:)
My saving grace today occurred a few minutes ago when I heard Jace start singing absentmindedly again. As I work on the computer, I always have my iTunes account playing. Just now, my head was in my hands on the counter in front of the computer as I tried to start this post, and just like a sign from heaven, Jace started singing… “Never Alone, never alone. I’ll be in every beat of your heart when you face the unknown…” It’s from Jim Brickman and Lady Antebellum. Recently my friend helped me find it, and it is beautiful. I’ve been playing it steadily for the last week, and Jace has apparently learned the lyrics. It was beautiful to hear his sweet voice again. It was also beautiful to refocus and remember that Jace is bravely and gracefully enduring this crazy trial, so mom can too.
Many of you have called about the BYOC gathering tonight, and although I haven’t been answering the phone today, we are still planning on shaving some heads. If you would like to come over, Hayden finishes basketball practice at 6:30. We will start at 7. Please dress warm, as we won’t be inviting you into the house. I know you understand. Jace is finally looking forward to it… and so is Hayden...so what can we say? Maybe shaving heads with many of you will make it easier for our whole family to help us remember we aren't alone in this, and we can do it.

Emergency Room Visit

2009-10-13T23:06:00.000-06:00

After a continued high fever this afternoon, Jace had to make an emergency visit to his local doctor and go to Madison Memorial Hospital for a blood draw and dose of antibiotics. I guess this is a normal part of the process, but Jace was pretty upset that he had to start over so soon after his Salt Lake hospital trip. We received quick and efficient care at both places, and we have two more favorite nurses to add to the list. Jace came home accessed, which means his Port has a needle in it with a tube taped to his chest. He will receive another dose of antibiotics in the morning, and we will know if his fever is due to an infection, or the result of his discontinued steroid meds.

The good news is, Hayden came to the emergency room after school and escorted us all home to celebrate HIS birthday. What a trooper. Happy 11th, Hayden. We love you.

One Month Down

2009-10-13T14:03:00.000-06:00

I’ve been rubbing Jace’s tummy off and on for the last 18 hours. He needs me to stay by him, and last night we sang Primary songs again. He came home from the hospital weak and sad. Instead of his favorite place on the couch, he went straight for the bed. We had a hard time getting him up to greet friends in the living room, and although he was sweet, as soon as they left he went straight for the bed again. His eyes are closed and he acts asleep, but if I ask him quietly if he’s ok, he nods slightly, and remains still. The procedures (Lumbar Puncture and Bone Marrow Biopsy) were particularly hard on him yesterday, but this is actually supposed to be a pretty good week, as he will receive a break from most meds. His numbers were great for a child enduring chemotherapy, and his prognosis is bright.

The happy news of the day is we finished the Induction Phase of treatment! This means, we have made it one month. I’ve been working on my, “Yay we finished one month” dance, but Jace thinks it still needs work. You should see him with his puffy cheeks, quietly giggle at his goofy mom. His treatment will change now, but he will still receive chemo every day. Matt and I will administer the oral medicine here at home. He will receive Lumbar Punctures (chemo in the spinal fluid) on day 0, 8, and 15, and he will continue to receive Vincristine weekly through his Port. (Day 0 starts on October 20th). Jace will discontinue his steroid medicine until again later in his treatment, so his cheeks will stop growing for now, and his acne will hopefully clear. He is very excited for this.

Jace continues to be a sweet boy despite his pain. He is particularly sweet to his toddler cousins and friends. Whenever one of the babies comes to visit, he elevates his voice and speaks directly to the child in a sweet tone. I also feel the spirit of angels around him every time I hold him. Yesterday in the hospital as he was awaking from the anesthesia in tears, I imagined several great-grandmothers and great-grandfathers there with us coaxing him with comfort and peace. In addition to feeling the angels from the other side, we continue to receive strength from the angels here with us. We love you and appreciate your sweet prayers.

We will be having a B.Y.O.C. party here at our home tomorrow night (Bring Your Own Clippers). Jace’s hair is thinning and patchy, so he wants to shave it. Hayden and Matt are going to join in the fun, but Jace gave me specific instructions that he doesn’t want me involved. Apparently he doesn’t think looking at me without hair every day would do anything positive for his treatment. I tend to agree.

Pay It Forward

2009-10-11T22:05:00.004-06:00

We had a difficult time getting out the door, but we made it to the Fun Run. Wow, was it amazing. Right as we pulled up to the scene of dedicated runners, family, and friends, the race was scheduled to start. I glanced at the thermostat in our vehicle, and it read 24 degrees. I couldn’t believe all of these crazy people on a Saturday morning were willingly inhaling the freezing air. I’ve always admired runners, but never as much as this morning, as many of them ran to support a cause… our cause…and our family.

Oh, and family! I didn’t know you were all so physically fit! It inspired me enough to want to dust off my own tennies. From my youngest nieces and nephews to my 85 year old Grandmother, (Jace’s Great Grandma—anyone get a picture?), you were ALL awesome. Thank you, thank you.

Jace stayed a whopping five minutes, but it was enough for him to feel loved and supported. Hayden enjoyed running, and I watched the entire event with a warm heart despite the freezing air. Pay It Forward People and sponsors, you really know how to bring good people together. We love you all and hope next year to be among the giving instead of the receiving.

"He's My Son"

2009-10-10T04:18:00.002-06:00

Jace doesn’t sleep well, and this morning is no exception. It is 4 AM, and we are sitting on the couch together. He just ate a full bowl of oatmeal, a thick piece of sliced cheese, and a bowl of Ramen noodles (Believe me, I try to talk him out of them). He is playing his new Lego Star Wars game on the Wii, but he needs me, “To hold his legs.” I just checked my email, and a friend recommended a song for me to find. It only took seconds before I had it downloaded and my tears were freely flowing. It is called “He’s My Son” by Michael Shultz. It’s a good one, but I’m thinking I should issue a warning. Parents beware. If you don’t have tissue, I would wait until you do-- Especially if your child has ever had to endure anything difficult. Is that a given when you are a parent?

Most of Jace’s days for the last week have been spent on the couch. Yesterday in an attempt to get his legs working, I asked him to carry his laundry to his room upstairs. He agreed, stood, and put his arms out to gather the pile of clothes I held. After three or four steps up, his arms were tired, and he begged me to take the pile back. Then he sat down on the step and didn’t have the energy to rise. It is difficult to watch him feel so crumby. Hayden was two steps ahead of him and watched Jace give out. He put his own pile down and came back for his brother. Although Hayden offered to carry Jace up, Jace was determined to “make it” by himself.

We are going to try to go to the Pay it Forward Fun Run sponsoring Jace today, but we are unsure of how he will feel. Our lives and activity are decided hour by hour. This morning as he tucks my hair behind my ear over and over, I am grateful for this hour I am spending with “My Son.”

Leukemia, Captain Chemo, and Power Juice

2009-10-08T14:02:00.002-06:00

Last night one of our dear friends said about the laughing incident that it might be unwise for ANYONE to laugh at our dear Jace. Most of Madison County plus many in Bonneville, Bingham, and Jefferson would “go to bat” for the Leatham boys. This AGAIN makes me cry. You all know how easily the tears are flowing from this emotionally battered mom…but they are mostly warm, grateful tears. Have I told you lately how thankful I am for EACH of you?

After the laughing incident, I’ve been thinking about how I can help others understand more about Jace’s cancer. I’ve been researching for a month to educate myself, but I realize I could share what I’ve been learning in an effort to help more people understand Leukemia. Also, I know many of Hayden’s and Jace’s friends are reading this blog, and it might help if I explain a little about this illness for more understanding.

One very useful site I’ve used to learn more is: http://www.leukemiafoundation.org/education . It explains: LEUKEMIA literally means 'white blood.' Leukemia is the term used to describe a variety of cancers that begin in the blood-forming tissues of the bone marrow, the spongy material that fills the long bones in the body and produces blood cells. In leukemia, the bone marrow factory creates an overabundance of diseased white cells that cannot perform their normal function of fighting infection. As the bone marrow floods the bloodstream with diseased white cells, production of red cells (which prevent anemia) and platelets (which form clots to stop bleeding) slows and stops.

When Jace first went to the doctor on Sept. 9, the first thing we learned was that he was extremely anemic. In fact, after we had initial tests and we heard the word “anemic,” I came home and researched causes of anemia. I actually called Matt and said, “I’m sortof freaking out.” We decided not to “freak out” because there was- “No way Jace had cancer.” How little we knew—

After arriving at Primary Children’s Hospital on Sept. 11, one of the first things they did to help Jace was to give him healthy blood, or a blood transfusion. We quickly learned the cancerous cells in his body made up 95% of the cells in his blood, so he did not have enough red cells providing oxygen to his major organs. Many of you have asked me if we had any indication of Jace’s condition before we took him to the doctor on Sept. 9. The answer is no. Our first indication of any illness was his fever on Monday, Sept. 7. Looking back, the only symptom Jace had that was similar to other Leukemic patients was that he had leg aches. Once or twice during previous months he awoke in the night with leg aches that were isolated to the back of his knees into his thighs. We treated his leg aches with heat and Tylenol. The aches were always gone by morning.

Like we’ve talked about, Chemotherapy kills rapidly growing cancerous cells. Chemotherapy is saving Jace’s life. It is also making it quite miserable. He has virtually no energy, and although he is always hungry, he is always a bit nauseous. One misconception for children that see Jace wearing a mask is that he is sick, so he might make them sick. This isn’t true. Jace has to wear his mask so that others don’t make HIM sick with something in addition to his cancer.

Jace will be returning to Primary Children’s Hospital on Monday for another Lumbar puncture and Bone Marrow Biopsy. We are praying for good cells. This morning I tearfully read Jace’s new favorite book to him called, “I’m a Superhero.” It is written by a cancer patient, Daxton Wilde. It reads:

“I have a bad guy inside of me called Cancer. He makes me really sick…inside of me there is a big, big fight going on. The doctors want to help kill the bad guy inside of me, so that’s when Captain Chemo comes to the rescue. The doctors give me medicine. They call it Chemotherapy, but I call it Power Juice…My nurse puts Power Juice in through my power button or my Port-a-Cath…I like my power button. It reminds me that I have super powers.”

I know Jace’s super powers are a combination of chemotherapy, Jace’s strong will, and prayer. Like I’ve said before Superheroes come in many forms, and Jace isn’t the only hero experiencing this saga. Thank you all for following by my side in this journey and making a difference.

Happy Birthday, Grandma

2009-10-06T18:13:00.002-06:00

Jace loves picking out cards for loved ones. He usually goes for the cards that have music playing when you open them, and although I usually steer him away from these because of the price, Matt lets Jace buy them for me. I have the sweetest card in my special drawer that says, in Jace’s voice, “Happy Mother’s Day Mom. I love you.” It is irreplaceable.

So today, when Jace wanted to pick out a birthday card for Grandma, I thought it would be good for all of us. His “numbers” are good; he feels strong today. Why not? He didn’t like the idea of wearing his mask in public, but Hayden came to the rescue and volunteered to wear one too. Problem solved. They both pulled on their hoods (Jace doesn’t like how he looks), put on their masks, and we climbed out of the vehicle at the store. My mother’s heart was very protective and anxious. I just wanted everything to be ok for them.

But of course they looked a little weird. It’s not every day you see two masked boys right? Although Jace didn’t notice it, a car pulled in next to us filled with young people who erupted in laughter as they saw my sons. The plates were from out-of-state. I’m not sure what emotion I felt—first, I felt the need to explain why they had to wear masks—but then I just felt a little frustrated. We shouldn’t have to explain. Hayden saw the kids laughing. He went into “protect my brother” mode by guarding Jace from the view, standing tall, grabbing his hand and walking away quickly. When Hayden and I met eyes, he knew I was proud of him.

Jace lasted in the store almost 15 minutes. By the end, he was worn out, but he had a darling birthday card in hand. It may have been the first time people laughed, but it probably won’t be the last. We are all learning some very tender lessons about the feelings of others, and hopefully my boys and I will remember these experiences long after we have killed this cancer. I also have a feeling Grandma may just keep this year’s well chosen card forever.

Great Numbers

2009-10-05T18:09:00.000-06:00

The theme of the day: No transfusions and great numbers. Yay. We know it's a product of our combined prayers, because Jace is doing wonderfully. His body is responding well to the chemo, and he is proving his nickname true-- he is the Iron Man. Part of the best news today is that his ANC actually rose from a .3 to a 2.3. This is an incredible leap which means, our green flag is flying. Healthy visitors are welcome.

After a thorough check-up by Dr. Hancock, Jace did receive another chemo treatment today, from some loving nurses. Our network of support grows daily as we meet new faces who care about our little boy. Everyone at Dr. Hancock's office took their time with us and had real conversations with our concerns and worries. We love PCMC, but we are also excited to finish our induction cycle and receive more treatments close to home.

Jace's face is also officially round, and he's starting to show real signs of teenage acne. His pants which used to fall down on him are also a tight fit. A few nights ago, as he was snuggling between Matt and me in our bed, he tenderly said, "I'm sure getting some chicken on these bones." He rubs his hand around and around on his bloated stomach and wonders how he is so hungry when his tummy looks so full.

I’ve never been a numbers girl- you know, English teacher and all. Honestly, don’t tell me a number for anything, because I won’t remember it. But today I’m holding onto a HCT of 28.1 %, PLT 88 K/uL, and ANC 2.3. Everything improved. Today Jace is ok, and right now even for me, the numbers really matter.

Brothers

2009-10-03T18:18:00.001-06:00

I'm not really sure what to write about today. I guess I'll let my fingers decide. If you've been with us from the start, then you know my absence from writing yesterday was rare...but I didn't have the energy emotionally or physically to share my thoughts. I'm feeling stronger today, and since you are all sooo supportive, I'll try to keep this up.

As a review- we are home, and we won't return to Primary Children's Hospital until Oct. 12. Jace continues to take medicine every day, and he will receive his intravenous treatment locally this week. He is scheduled for another lumbar puncture and bone marrow biopsy on the 12th. We are anxious to see Jace’s labs this Monday, because he is pretty weak. This morning he was excited to try to go to a football game again. He even dressed in his favorite school clothes (for the first time in three weeks), and when we pulled into the game he was in tears. He realized he didn’t have the energy to get out of the vehicle. He slept through the game, and we brought him home with a sick stomach and a sad heart.

I’m not feeling picked on though. I just wish I could trade him places. His attitude remains mostly positive and sweet. We also continue to receive your strength through phone calls, gifts, cards and texts. I thought maybe it would start slowing down since the shock has worn off, yet we are receiving your continued support, and we are very grateful.

Hayden will be home from school with us for the next week. It is harvest break here in our district. I can’t help but think this will be good for both boys. Yesterday when I witnessed Hayden carrying Jace on his back, and finding the right snack for him, I cried thankful tears that as brothers they continue to serve one another. Heavenly Father knew Matt and I couldn’t do this alone, so he made sure we had a strong, incredible big brother for Jace. We are so blessed.

Thanks Madison County Emergency Services

2009-10-01T19:16:00.002-06:00

I knew you made house calls, but I didn't know you save lives this way too. My eyes have been opened in many ways over the last two weeks, and Madison County, you've done it again. Not only did you bring an impressive crew and honorary attire to our home, you helped place a smile on the face of my soon-to-be seven year old. I've been trying to talk him into being a doctor for Halloween, but you've changed his mind. Now, he may just choose to be a fireman or EMT.

Our recent exposure to so many acts of love has made us pause to appreciate the heroes around us. They are appearing in many forms. The ladder reaching from the road to our front step symbolizes all of you who are lifting the spirits of our Jace and Hayden for the days to come. Thank you. We love you all.

Sweet Little People and Rain

2009-09-30T10:53:00.000-06:00

Awww rain. It’s coming down for the first time in a while. The clouds are hovering, and the air is crisp. This morning I watched my next-door niece get on the bus without Jace. His swollen little body is curled up next to me, and we just finished doing some homework. He slept restlessly last night, and one time when I checked on him in the night he was dripping wet. I can only imagine what must be going on inside his blood. My creative brain pictures good cells overtaking evil cells, and I’m here on the outside being the most intense fan, cheering for good.

I talked Jace into letting me take a picture of his long hair (on the condition that he didn't have to smile). Right before he went into the hospital, he was due for a haircut. Now, 2 ½ weeks later we still haven’t trimmed it. We were told he might start losing his hair anywhere from 2 weeks to 1 month. He’s getting more used to the idea of not having hair, but I think secretly he hopes he will keep his mop. All I know is that despite the way his life has changed, Jace is still so sweet. When I kiss his forehead and tell him he’s a good boy, he always responds, “You are a good mom.” He’s starting a calming habit while he sits next to me of putting my hair behind my ears over and over. He also catches my eye as I walk by him and says, “Love you.” It’s amazing how he perceives my hurt. I try so hard to guard him from my fear, but even though we don’t speak of it, he knows. He will tell me things like, “I’m really ok, mom,” and “Don’t worry! I’m fine.”

Last night while Matt stayed with Jace, I met with some friends to discuss basketball season for Hayden. It was so nice to be in a comfortable room with adults who genuinely have the same interests and goals for our children. We drifted into a conversation about how the little people in our world are all so perceptive and in tune with the spirit. Today I’m grateful for the opportunity I have to be home with this spiritual giant named Jace. He is lifting my heart and making it possible for me to smile. His puffy hands just finished gluing his art project together. He said, “My arms need a break,” so we are taking it. In a while we are going to bundle up and walk outside. The sweet moisture in the air has settled the dust, and he will be able to walk without his mask. Rain sweet rain.

Homework (Plato) on the computer- with a heated "rice baby" on his aching wrist.

Absorbed

2009-09-29T09:06:00.043-06:00

As I prepared Sunday night, for the hospital trip yesterday, my brother J'dee asked, "Has it absorbed?" I asked for clarification, and he simplified his question by stating another, "Has the shock worn off?" My response at the time was, "I don't know."

Driving home yesterday I felt the weight of our reality creeping deeper and deeper. I'm trying to embrace chemotherapy. After all, it is saving Jace's life. But wow, the side-effects make me sad. Jace still has numerous aches and pains associated with the drugs. Also, you'd be surprised at how drastically it is altering the way he looks. We learned yesterday he has gained 5 lbs. in the last week. I'm pretty sure it's all in his cheeks and belly. He is also so tired and weak. His numbers yesterday were pretty normal (for a child with Leukemia): WBC .7L, RBC 3.14L, Hct 26.3L , ANC .30L. That might not mean much to most of you, but some of you might understand. The Hct at 26.3L is pretty low. That is the number they look at to decide if he needs a blood transfusion. The ANC @.30L is also low. This is the immune-compromised number that was a .20L last week (or what I called 200). While we were in the hospital, they didn't like Jace to leave his room if this was below .40. This number indicates it is almost impossible for Jace to fight infection. He cannot be exposed to anything.

This week we are grateful for the tender mercy of being able to return home once again. We even received the fantastic news that we can receive our treatment in Rexburg next week, but then return to PCMC on the 12th for more procedures.

Today we are going to tackle insurance and find the dreaded truth about how much it covers. We are also going to try to get caught up on the mountain of homework Jace has accrued. He doesn't feel like doing homework, but he also doesn't want to be in first grade again next year. Right now he is eating scrambled eggs and rubbing my arm tenderly as I type. He says to tell everybody hi.:)

Jade, I think so. It has absorbed. I have a sick boy to hold, a pile of papers to go through in front of me, and a house to clean. No shock. Just life. Eighteen days down and counting. We can do it.

(Making a penny wish in the fountain in front of PCMC)

How Jace Feels About Going Back to Hospital

2009-09-27T21:55:00.000-06:00

Enough said? Wish us luck.:)

Synergy

2009-09-26T22:13:00.003-06:00

Despite our best efforts at making Jace smile, Matt and I just can't do it alone. Hayden holds his own by adding comedy to most situations, but tonight when a few family friends came over, Jace and Hayden played and smiled more than we've seen all week.

We had a big day which began with our first, real public appearance as an entire family. Because the weather was so beautiful, we knew it would be good for Jace to get out into open air. We packed our chairs, umbrella for shade, some blankets, a cooler with water and Gatorade, and a few snacks (yes, I took macaroni and cheese this time.) Then we drove to attend a Grid Kid football game of our friends. When we arrived, Matt found a place away from the crowds and carried Jace to a comfortable chair by the end zone. As we sat down, our team scored right in front of us. Go Cats! It was a beautiful sight for Jace to see that all was right and well in the world. Though Jace and I only made it outside just past half-time, Jace was better for the outing, and we saw his spirits leap.

Jace also picked his own pumpkin out of Grandpa's garden, and pulled a few carrots. Tonight he made his own Tiger's Blood Snoshack and played Uno with friends. It warmed my heart to see him happy and revived. It also made me extra grateful for the combined efforts of everyone involved.

Many times in life I've thought the only way to do something right was to do it myself. (Ask Matt. He'll tell you all about it.:)) I now more than ever regret my pompous attitude and repent whole-heartedly. What I saw in my family today was the magic that was only created by the combination of several people. It wasn't just today either. Every day for the last two weeks, the special combinations of people who are touching our lives-- are therapy equal to the chemo Jace receives. I teach my students at school about the concept of synergy: 2+2=5...or combined efforts are greater than the sum of individual efforts. Today, like other days, the chemistry was right. We experienced synergy. Thank you all who are experiencing this with us, through our blog or otherwise, for being the right ingredients. We love you.

Sweet Cheeks, Jam Sandwiches, and 3 AM

2009-09-25T03:58:00.001-06:00

My nights at home have been restless and full of hospital dreams. I force myself to awake from the nightmares only to realize my living horror is still true: Jace has cancer. It's still hard to believe. I think Jace must also be having bad dreams, since he awakes about every four hours. Matt has been taking the night shift since he's away from Jace during the days, but I talked him into letting me get up this time, since I wasn't asleep anyway.

Jace is so precious in the early hours of the morning. An hour ago, when he came into our room, he said, "My tummy is growling." We were advised by the nurses and doctors he would be ravenous, and despite his sick stomach, he is very hungry. The food of choice yesterday was mostly fishsticks, in addition to macoroni and cheese, spaghetti noodles, steamed vegatables, crackers and cheese, popcorn, string cheese, chicken noodle soup, and jam and bread sandwiches. It took looking at the picture from my last post for me to realize Jace's cheeks are growing. He's on a high dose of steroids, so it makes sense. The doctor said he's had patients gain from 0-20 lbs. in the first month. We are blessed Jace doesn't care about gaining weight, and I'm practicing my "you look tough" talk.

We've had good days at home. Jace has been running low-grade fevers, but they haven't reached the point where we are suppose to call the hospital. He is obviously ill, but he tries very hard to be pleasant. Mostly he rests on the couch, and I try to entertain him with books, Wii Fit (he likes to laugh at me doing the hula hoop game), computer games, and movies. Wednesday he was frustrated about the situation of being indoors...not going to school...not feeling like going outside... so we spent 30 minutes throwing "splat" balls at the wall. It helped him release a little anger, and made us giggle. I wish you could hear him laugh.

He just drifted back to sleep, and I couldn't help but stroke his full head of hair and his sweet plump cheeks. Some of you have been telling me I signed up for this, but I find that hard to believe. I'm so weak. But Jace-- now that I understand. He was probably first in line saying something like, "Bring it."

"The People Who are Helping Us"

2009-09-23T23:25:00.002-06:00

After spending a long day on the couch, Jace said our family prayer again tonight. Among others things he prayed for, "The people who are helping us." He said, "Please bless them, and keep them safe."

So, after the HK fundraiser today, MANY of you have just been prayed for by a little six-year-old with cancer. Matt came home with a look of disbelief, and I gently coaxed him to tell me about his day. He was overcome with your generosity, friendship, and example of love. I truly wish I could have been there. So many of you went the extra mile to prepare, organize, cook, attend, donate, and clean-- just for our little family. I hope you can understand how overwhelmed we are with gratitude. Many times over the years we have been grateful for Matt's employment, but never as much as today when we both reflect on the goodness of your hearts. Last week my list of tender mercies included our local community, but tonight it spans across the state from everyone who contributed in any way to the success of the lunch today. Thank you, from all of us.

Pacers for Jacers

2009-09-23T11:28:00.002-06:00

We received pictures via email of our incredible buddies at Jace's elementary school. Some ambitious parents have designed a program, called Pacers, for the students at our local school to run or walk during recess on certain days of the week, receive tokens for miles completed, and receive a reward of a field trip at the end of the year if they complete 50 miles. My older son Hayden worked very hard at earning his field trip during his 4th grade year, and for the first two weeks of school this year, Jace was running pacers...(wondering why it made him so tired!). He was saddened that after he learned he was sick, he wouldn't be able to complete his 50 miles.

But, of course, the little heroes in our community came to the rescue. Jace's friends at his school ran for him this week. Once again I'm awestruck. Thank you children. You are amazing.

Small Enough

2009-09-22T22:23:00.002-06:00

We continue to receive help and donations from you, and we are overwhelmed with gratitude. Among the greatest gifts you've given our family is help for me to stay home with Jace. Today we sent daddy to work and Jace and I spent a tender day together as we paid attention to each of his new aches. His jaw hurts (bone aches), his skin is dry (chemo), he's sick to his stomach (chemo), and he broke out again in hives (platelets- I think). Despite these hurts, and his fighting attitude, Jace is still charming and sweet.

One of my favorite songs for a long time has been a Christian and Gospel work by Mindy Gledhill called: Small Enough. If you've never heard it, I recommend the download. In months prior to Jace's diagnosis we listened to this song almost every day while I did my make-up in the mornings, and he bathed in my bathtub. He's quite a singer, so it won't surprise you that he knows every word. This morning I went to check on Jace in my shower, and I found him sitting in the bottom of the shower, against the wall, singing these lyrics:

Oh great God, be small enough to hear me now.
There were times when I was crying from the dark of Daniel's Den
And I have asked You once or twice if You would part the sea again
But tonight I do not need a fiery pillar in the sky
Just want to know you're going to hold me if I start to cry
Oh great God,
Be small enough to hear me now...

As I waited for him to finish, I sat on the side of the tub and was again amazed at his strength. He has such a strong spirit of faith and determination. It's pretty crumby that maybe part of his illness is to strengthen all of us, but I don't think he minds sharing lessons learned. He does hate being sick though. We actually went for a small drive today, because he's not used to being indoors so much. Our front porch has become our favorite place, and Matt held him in the porch swing for a while tonight.

Jace's allergic reaction this morning wasn't as bad. He was so scared he'd have to go to the hospital; he was relieved and grateful he could just take a spoonful of medicine. Tonight we are grateful for Benedryl, friends, and a loving Heavenly Father who we know hears and answers prayers, but I'm not sure I'd call the kind of power we are feeling "small."

Oh, and guys, don't worry. Just for the record, he also sings a killer chorus of, "I AM IRON MAN."

Allergic Reaction

2009-09-21T18:33:00.011-06:00

After Jace's bout with an allergic reaction to the platelets, I considered for one brief moment, walking away from this blog.:) I wondered how I could post such a painful experience today, and keep doing it in the days to come. There we were on a little high about favorable cancer (How is that possible?? Students, did you catch the oxymoron?), and wham. His eyes started itching, his tongue started swelling, and before I knew it, my morale was knocked lower than it has been since last Saturday. Of course the nurses were immediately there medicating him to reverse the effects, and it eventually subsided. It's just so frustrating, because the reaction wasn't due to the Leukemia or the chemo. It was simply his body rejecting the donor's platelets. But, there is nothing like seeing your child cry and thrash and beg for relief. It also prolonged the dreaded hunger he felt, and we've never seen him more mad. For all of you who know the Grovers and the Leathams, picture this: A Grover at his maddest-- then a Leatham at his maddest. Combine the two and you will see how Jace was this afternoon. He instantly had hives covering his body, and although I handled it well at the time, when they took him for the LP and Biopsy, I broke down again.

Matt is helping me see, now while I'm writing that maybe the reason today was so hard on me was because I didn't know how to help Jace. Luckily, Matt reacted well once again, and Jace knew his dad understood that sometimes fighting back just helps. Jace wasn't sad. He wasn't scared; he was just plain ticked.

Although the allergic reaction set us back a few hours for the Lumbar Puncture and Bone Marrow Biopsy, they still accomplished these tasks this afternoon, and felt like everything else was looking ok. Although his immune system is also as low as it has been at 200 (they prefer it to be a thousand), we don't have to return to Salt Lake again until Monday.

Today, Jace "Took the bull by the horns," (and his mom was trampled!):) At 4 PM he finally received his reward of Mac & Cheese, Cream Soda, and a comfy ride home.

Back at PCMC

2009-09-21T10:48:00.009-06:00

I'm going to post some new results we just heard, in order to save a dozen phone calls. The majority of you may want to skip this technical stuff, but everyone can rejoice with us when I tell you that things are looking great! We just visited with our attending physician, and he was excited when he looked over the results from the biopsy last week. One intimidating thing we learned is that 95% of the cells in Jace's marrow last Monday were cancerous. With that said, we don't really understand this yet, but maybe some of you will. The Dr. said he found some "SIGNIFICANT" good news: a (12;21) favorable chromosome swap. They call this Tel-Aml 1. Apparently in the smart people world, this is good news. We also think we will be able to come home today.:)!!!!

Jace just received some of his chemo meds, and now we are waiting for platelets (yes, his were too low to go for the other procedures). Jace has been crying because he is sooooo hungry, and he's a little mad that we didn't bring our own Mac n' Cheese. The nurses side-tracked him with a squishy ball to throw at the wall and with an X-box. He's playing now.

I'm on the verge of tears, and I'm not sure why. I'm actually feeling really relieved about so many things. I guess maybe that's it. The nurse, Amy, (-- great name hu?) just asked if anyone has told me this gets easier. I think a few of you have, but you may need to remind me. Last week is a blur, and if is all the same to you, I'm not looking back.:)

"Look Up"

2009-09-21T05:02:00.002-06:00

Matt had the pick-up pulled out of the garage and neatly packed for the trip today as I scurried out the door with last minute items I forgot to pack: mug of ice water (check), Nerf gun (check), hand sanitizer (check)...and Jace was cuddled into the back seat waiting for me. As I approached the door, he rolled down his window and excitedly said, "Mom, look up." I tilted my head to view a star filled sky, and I had to catch my breath. "Look at all the stars!"

We had an amazing weekend, with Jace perking up Sunday to almost his usual self. The food of the day was spaghetti-- in large quantities I may add. We had a quiet morning, and we took shifts to attend church. The few visitors we greeted in our home made Jace smile and play: Uno, Apples to Apples for kids, and more Uno. I was quite emotional packing for this trip, because I don't know what to expect. What to pack? How long will we stay? Is Hayden ok staying behind? Plus, while Jace was watching us prepare we went through his questions of: Is it going to hurt when they access my port? Why can't I eat after midnight? Can we take some macaroni and cheese and fix it at the hospital after my surgery? (Today he will have another Lumbar Puncture and a Bone Marrow Biopsy.)

When most of the guests were gone and the house settled, Jace needed Matt to hold him on the couch. Even though he had a good weekend, Jace was nervous for what the morning would bring. At 4 AM our house started to stir, and we were out the door by 4:30.

It's peculiar to me how Jace always says the right thing at the right time, and this morning was no exception. With his sweet spirit he calmed my nerves and gave me simple but powerful advice...and just when I felt my anxiety level reach new heights from boarding the vehicle that was taking him back to a hospital, he reminded me to, "Look up." I breathed another prayer, looked up, and we were on our way.