Sweet Little People and Rain

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

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

Enough said? Wish us luck.:)

Synergy

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

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"

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

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

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

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

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"

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.

Chunky Chicken Noodle Soup and Naps

Jace requested soup for breakfast today. His favorite is the Chunky Chicken Noodle. After a rocky morning with an upset tummy, it seemed to soothe his body. We also ventured out of the house to attend (from a distance) Hayden's Grid Kid Football game. The field on which he was playing made it possible for us to park next to the game and view it from the safety of our own vehicle. It was good to feel the sunshine! I thought it would be difficult for Jace to stay in the pick-up, but he didn't feel well enough to play anyway. He looks good, but he's not our lively, run around the field kid. Lots of family members were supportive by putting their chairs in front of our vehicle and gathering in the general area as us so Jace didn't feel ostracized. Hayden played well and even scored a touchdown. Go Cats! It was so nice to be able to watch him. (Thanks Hayden's team for the cheer! It made Jace's day.)

We are trying to carry on a normal life for Hayden so he doesn't end up resenting his little brother or feeling unimportant (though I doubt Hayden would), and as many of you know, a typical Saturday afternoon for the Leathams is spent in the mountains on horses. So, since it's been a few weeks, the crew packed up (minus Jace) and hit the trail. We didn't tell Jace they were riding, and I don't feel badly for misleading him about "Daddy and Hayd doing yard work at Grandpa's."

From previous rides:





























Today, Jace ate more Chunky Chicken Noodle soup for lunch (his choice), and he and I both napped. Tonight as I reflect on our day, I am grateful that even though he didn't get to go riding, he was with me. Deep in the back of my mind I get fixated on an ugly number. As a mom experiencing some very emotional issues now, let me tell you how uncomfortable the words 90% curable are perceived. I can do the math. It's awesome. It's incredible-- but the reality is, 90% isn't enough. Another uncomfortable comment is, "He's going to make it-" because no matter how you say it, the implication is there is an alternative.

Jace continues to caress my neck and arms when I hold him. Today he started to occasionally motion for things instead of talk, because his jaw aches (we were told he would have bone aches). I'm praying for his continued strength to enjoy a few small things he loves so much, like pumping his new Nerf gun and shooting the male guests who come to see him, and of course squirting the syringes. Today he cried that he is finished with football for the year. With a confident, smiling face I assured him there will be football in his future, and I asked him to just focus on feeling well today. Six days down. We can do it.

"What Matters Most"

"I believe that among the greatest lessons we're to learn in this short sojourn upon earth are lessons that help us distinguish between what is important and what is not. And what is most important almost always involves the people around us. Often we assume that they must know how much we love them, but we should never assume. We should let them know."
President Thomas S. Monson (YouTube, Mormon Messages, What Matters Most).
http://www.youtube.com/user/mormonmessages?blend=1&ob=4

So, right now, I'm not going to assume you know. I'm going to tell you. The outpouring of love our family has received is beyond comprehension. Tonight I'd like to especially reach out to our Madison Bobcat family.

Tearfully Jace and I watched Matt and Hayden go to Madison's Homecoming Football game. We had to push Matt out the door, because he didn't know if he was ready to be in public, but we knew he had to support Hayden who has been going to these games since he was in the womb. What Matt and Hayden found within Bobcat Territory were hundreds of people cheering for our little boy. From the players having Iron Man Jace #33 written on their arms, to the crowd who beckoned him in, Matt was overcome with emotion and love for our friends, family, and town. He recalled as many details as he could to me, and from what I understand baskets were passed around for donations and fundraising tables were set up selling bracelets, stickers and Bobcat cards: all in Jace's name. Unbelievable.

It's pretty overwhelming you know. Like I said before, I'm not sure Matt and I deserve this outpouring. But we are being carried by your love, and we have to tell you how amazing it is to feel your strength and support.

Jace had a good day at home. He ate Popsicles with Grandpa, and he perfected his skill in squirting water off the front porch from the giant syringes the hospital sent home with him. Two uncles and Grandpa were drenched in the process, and I even had to get after Jace for being so lively. His bursts of energy are quite short lived though, as I noticed after every rambunctious few minutes, he would collapse to the comfort of the couch and the comfy blankets. Tonight he had a sad face the minute his brother and dad left.

"It stinks being sick, Mom," he said, as his heart broke that he wasn't going to the football game. Matt asked him if he'd rather Matt didn't go. Jace replied, "You should take Hayden." And so it was...we played Uno for an hour, I held him on the couch for two, and he restlessly drifted off to sleep. I watched my son breath in and out, wondering about the days to come. He cries when he thinks about losing his hair, and he cries when he thinks about going back to the hospital. My "tender mercy" tonight is thinking of a sea of red, white, and grey...and the love those colors represent on Homecoming night in our little town. Thank you for helping us remember What Matters Most. We love you all.

Home

(I started typing last night, but never finished. Here's a post from last night and this morning). It feels like a year since we've been here. Tonight we walked into a sparkling clean, disinfected, heaven on earth. I'm not sure I want to know how many people saw the nooks and corners of my house, but truthfully my pride went out the window about 6 days ago. Thank you all for your hours of service. We know how giving you have been.

As we arrived home a few close family members met us in the drive-way, cheering and offering support. Upon entering the house everyone was careful to use hand disinfectant, and a few close, healthy cousins gathered around Jace in a tip-toe sort of way. He was quiet, yet relieved-- to see that life was pretty normal. After showing off his syringe water squirting skills from the front step, he sat on my lap. Everyone said good-night early, and left us to enjoy the perfect weather and pretty sunset. It was interesting how strongly I felt the spirit sitting on my front step with my little boy. Two weeks ago he was running across this lawn squealing with his cousins. Two months ago he was practicing catching the baseball with Matt and Hayden.

When I suggested we go inside, Jace wanted to stay. We were facing west and we watched the orange fade from the sky. He cradled his head in my neck and told me I was the best mom ever. It's amazing that in times of his illness he is reaching out to everyone else. When he sees me cry a little he says, "Moooom! You're ok!" We made a little deal in the hospital that if he'll let me cry, I'd let him cry. It's proving to be pretty effective.:)

We haven't seen the news story or Hibbard pep rally for Jace. Emily taped them for us and brought them over so we'll watch them in a few minutes.

This morning we are boiling eggs (Jace's latest craving). He's sitting next to me on the couch, running his fingers through the back of my hair, while he watches television. He is weak and and tender, and so precious. After a good night's rest, Matt and I are energized and ready to tackle the day. Matt is taking some of the cash we've received (from you) to fill his Wal-Mart cart with paper towels, hand sanitizer, masks, lots and lots of liquids, and olives.

We love you all.

Hope, Faith, and The Grace of God

You'll never believe where we are going... Your prayers and faith have made it possible for my little family to be together in our own home tonight.

Jace received chemo this morning, and we were discharged after they observed him for a few hours. We will be giving his meds to him over the weekend, and won't go back to Primary Children's until Monday. That means four nights in our own beds. Sooooooo...all of you faithful followers....is now a good time to ask you to let us rest? Heheh. We want to see all of you so much, but Jace is officially immuno-compromised. That means, his immune system is not capable of functioning properly. We have to keep him from being exposed to any kind of infection or sickness.


With that said, let me express our deepest, most sincere thanks we can offer. We know it is through the entire community of family, friends, Hibbard wards and others, HK, Madison School District, and everyone else praying, that our little Jace isn't sitting in a hospital bed right now. We have a long road ahead of us, but we know with your support we are going to win this battle with Leukemia. (When I get weak and have days of doubt please remind me how strong I'm feeling now. )


This morning the Salt Lake Fire Department came to Primary Children's Hospital for Jace. They let him get in their truck, start the engine and blow the horn. As he sat in the driver's seat I thought of all the effort the firemen made to get to the hospital, and I knew I could times that by ten to compare it to what is happening in our own community. Thank you, thank you.

When Jace climbed out of the fire truck he looked west over Salt Lake. He reached his arms up for me to carry him, and as I gathered him he whispered in my ear, "Mom, look at the view." I nodded with tears in my eyes knowing his sweet spirit will carry him. The view is sometimes clouded with hospital walls, but not tonight. Tonight we will be home...and very grateful.

Chemotherapy 101

I drove to Staples yesterday to buy a binder with tabs for the information we have been receiving. We also received a binder from our social worker, so we have two full books of information important to the well-being of our little guy. Not only do they give us information, the nurses here are actually staffed to allow frequent and intense teaching sessions. We were glad to have Randal here, because Matt and I were in Chemotherapy 101 all day. Matt was glad I was mentally present for the first time since we arrived, and I know why. It was overwhelming.

Chemotherapy (cancer medicine) affects all rapidly growing cells-- normals cells as well as cancer cells. The cells lining the mouth, stomach, and roots of the hairs are examples of cells that grow quickly. That is why Jace will lose his hair and sores may appear in the mouth and stomach after chemotherapy is given. Chemo also affects three important blood cells: red blood cells that carry oxygen, white blood cells that fight infection, and platelets that help clot the blood. I received help yesterday to find a book at Barnes and Noble which I can use to help Jace learn about these important facts... so if you need to look at it sometime let me know.;)

One of the first paragraphs in a hand-out we received says, "Many parents wonder what caused their child's cancer. Almost all cancers in children occur for no known reason. Most arise from non-inherited changes in the genes of growing cells."

We have a calendar for Jace's treatment for the first month, or his "Induction." (This is the first stage of five including: Induction (1 month), Consolidation, (1-2 months), Interim Maintenance (2 months), Delayed _____ (something I can't remember right now) (2 months), and Maintenance (2 1/2 years to 3 years). The first stage takes us through October 12. Every day Jace will take or be given one of four meds. Some days are more intense than others. On Mondays, no matter what, we will be here in PCMC. After this week, the other days can be administered at home. BUT, this is all dependent on many factors including how Jace is doing...if he is fevering, etc. We are SOOO lucky to have a local Pediatric Oncologist. Everyone here speaks so highly of Dr. Hancock, and we are thrilled that when we return home we have a very near resource.

Is your head spinning yet? Matt and I feel your pain.

Jace is MUCH better tonight after his transfusion. It took until about 9 PM for him to get much energy back, but he's watching TV now. We had an emotional day- dealing with the changes our lives are destined to have for the next while: Jace's numbers were up enough that they let him go outside on a patio today. He was so excited to go out- for the first time since Friday, but after placing his face mask on and walking to the 3rd floor, his energy was fading. Then he realized he couldn't sit in the sun, because of the chemo...and he'd have to leave his mask on because there was dust in the air...and after all this, he didn't have the strength to walk back. Matt carried our little man back to his room. It broke my heart to see my touchdown scoring, bases running, ball of fire crawl into bed and fall back on his pillow.

But, like another dear friend pointed out tonight...3 days of chemo down and counting. We can do it. Although we feel like we will never remember the things we've been taught about how to care for Jace through this Chemotherapy process, we find strength in all of the things you are doing for us. I'm nervous to start listing them, because I know I'll leave something out. Please just know we appreciate all that you do. When Jace heard he was on T.V. tonight he said, "Man, people are going pretty crazy over one little sick kid."

The Truth

I have to admit to all of you who think I'm so strong that I wallowed this morning. It's only fair you know the truth. Especially because many of you are thinking I'm holding it together. Today when we learned Jace needed another blood transfusion, I finally really cried. Matt consoled me and together we decided I am just exhausted. Because Jace was sleeping peacefully at the time (which I know now was because he wasn't getting enough oxygen from his red blood cells), and he wasn't in any pain, I curled up next to him and swam around in my sadness until the hospital room phone rang. Matt had just stepped out to let us sleep, so it was up to me to decide if I was getting the phone. As many of you know, I haven't been answering my cell phone. I've been texting close family, and I'll look to see who calls, but I'm not great at communicating yet. I'll do ok for a few minutes, but then I get that scrunched up face and my voice goes all squeaky when someone asks how things are going. I promise. You don't want to hear it.:) But this time, I heard my cell and didn't look. I just kept crying.

So it surprised me when the hospital phone rang in our room. I looked at it for five rings, and then something told me I needed to pick up. It was my friend. We had a short but great talk, and she ended by explaining something she did in times of sadness: she made a list of the Lord's tender mercies associated with the present situation. It made instant sense to me. I'm so glad she called. As I dried my tears, my head teemed with how many things have been going right. Here's my list:

Tender Mercies

A quick blood test by Miller sent to a pathologist on 9/9

Dr. Speakman finding Dr. Hancock

Dr. Hancock coming back to his office on 9/11

Family: grandparents, parents, brothers, sisters, nieces nephews, and cousins
Primary Children's Hospital

Prayer

Nurses Kathleen, Marie, Liz, and Ben

Brilliant doctors

Mike, the Child Life Specialist

Understanding employers and co-workers

Blood donors

Traveling baseball network of friends

Everyone sending love and support

Students

Hayden's sweet spirit

Jace's spunk

I'll post in a while to tell you all the things we learned today. Jace's pizza just arrived.

You Are Amazing

Two hours ago Matt suggested I put the computer away. Jace fell asleep at 9 PM!! (a record for our stay here), and we were more than ready to sleep. I was catching up on the comments from the day, and as soon as I finished I closed my laptop, put my phone on silent, and rested my head on the pillow.

But...tonight I have the chair by Jace's bed. Last night Matt took this shift. We've decided at least one of us needs to try to be rested in order to be strong the next day. Our dear friend brought in an itty, bitty air matress that barely fits behind the rocking chair on the floor, so we've traded nights on it. (Don't tell on us though. We're pretty sure it's not allowed. We were told that only one parent can stay with the child, but for "a first time diagnosis family," they bend the rules...).

Having the chair by the bed means it's hard to sleep, because all I can do is look at Jace. His precious face is illuminated by the permanent nightlight in the room, and he's restless. He's tossing and turning, and even in sleep you can tell he doesn't feel well. Then my thoughts drift to wondering how I might be responsible for his current health. PLEASE don't send me comments like, "Don't beat yourself up," and "It's not your fault." My brain knows that, but you have to cut me a little slack as a mom-- because I'm going to wonder in my heart. I guarantee you would too. When you hear cancer buzz words like genetics and DNA it's hard not to. I also try to see into the future a bit and imagine my Jace as a 6'3" dimple-faced, 18 year old. I'm envisioning the largest party you've ever attended. From west to east coasts, you'd all be invited to celebrate our victory...and maybe not just ours. Maybe we could celebrate for everyone who has ever fought for their lives against this raging monster called cancer that attacks families and homes and communities.

In addition to watching Jace, I'm sitting here wondering from where you all came. Matt and I have heard what you are doing, and we just can't believe your efforts. From praying -- to organizing a dinner-- to setting up a donation account-- cleaning our house-- moving furniture to clean carpets-- running 5Ks in Jace's name-- and creating hand-made bracelets that say Ironman... we honestly just shake our heads in amazement of why we are so fortunate to have the support we have. Honestly, Matt and I don't deserve it-- but I know the real reason you are doing it. It's because you see what we see when we look into Jace's eyes. Thanks again everyone. We really do love you all. 'Night.

Hope, Faith, and Olives

"Fear not, I am with you, 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."

These words are running over and over in my mind. Thank you all so much for reminding me that faith and hope go hand in hand. You are right too-- I can't fear if I have faith. I'm going to hold onto this thought, and do my best not to fear.

We feel your prayers. Matt and I were commenting this morning about what good health we are both experiencing. Normally when we crawl out of bed at home, we are both aching and old.:) Here in the hospital, we are sleeping haphazardly and in even worse conditions-- we awake 25 times a night, yet in the mornings, we are revived and well. Only your prayers and pleas with heaven are making this possible. I know this for sure. I can't tell you how much we feel your love.

Okay, so now for the real reason you are reading this blog: Jace.

He is also doing well under the circumstances. He is weak, but happy. He actually ordered olives for breakfast (apparently Chemo patients sometimes crave salt). He isn't nauseated today, and he is enjoying many of the gifts you have brought here and sent here. He is smiling and teasing his favorite nurses and doctors who have fallen in love with him. They have taught him how to squirt water from a syringe, play volleyball with balloons, and operate and place a *port* on a *hospital buddy.* He is far from his spunky self, but he is ok.

This morning he cried to come home. He misses everyone so much. We tell him we will be there soon, but he doesn't realize "home" is going to mean something much different than it did a week ago. It's hard to believe this life education in sorrow and fear-- hope and faith-- started only FOUR days ago.

I have focused on hope today. It is making a difference paired with the faith you all helped me add. So, for the evening, it's hope and faith, and apparently for dinner we are ordering more olives.:)

Fear

Here we are again- watching his chest go up and down. His chemo treatment may start showing some effects, and if you were here, you would see the fear in our eyes. We look over him at each other with that "parent" look and just shake our heads. It's still surreal.

Your messages and comments on the blog are keeping us going. Last night Jace's blood pressure was too high after taking a shower, so he crawled back into bed and we cracked the computer. "Read some more," he says. "Find the one about... remember when so-and-so said this?...they think I'm tough?" You know how you never listen to the ones who are closest to the situation? Like if your mom tells you how amazing you played in a game, you don't believe her because she *had* to say it? Well, everything you tell Jace is reinforcing his strength.

My fears this morning are thick and ugly. Yesterday a nurse had to "gown up" to put chemicals into my little boy's body. We were instructed that if he throws up or pees on us, it's considered hazardous material. We have to wear gloves to hold his bedpan... It is TOO much. I'm not sure why it has to be Jace, but I am starting to understand there is a reason for his spunky personality. He's going to need it.

Thank you to EVERYONE taking care of Hayden. When we met with the social worker yesterday, she asked if we had a burning question to discuss. We tearfully explained that we hated being separated from our other little man-- but as we started telling her about our social network of love, she helped us know he is just where he belongs. Those of you surrounding Hayden with love are my heroes this morning. Last night we heard reports of those of you "keeping an eye on him" and we cried thankful tears. Hayden is such a tender, sweet boy, and we know he will try to protect us from the reality of any pain he feels, so we appreciate those of you calling him and communicating with him. Even though he will say he's ok, we know he is hurting so much.

My favorite word in the English language is hope. This morning I'm going to focus on that word with all of the energy I have. Thank YOU for lifting us and loving us and making it possible to hope for the best.

In His Own Words

Our education about the "Cancer" world is a crash course to say the least. Like I mentioned before, Matt is taking the reins with the details, and I'm soooo thankful for his insight and perspective. After an hour of grueling questioning between Matt and one attending physician yesterday, the doctor complimented Matt on his attention to detail. He actually asked, "Are you an accountant?" We laughed. Matt said, "I'm a construction worker."

About our treatment, we have learned that the first month of Chemo is intense. A series of meds (chems) will be given to Jace over a period of 29 days, called the induction period. Dependent upon his reaction to the Chemo, we are hopeful that he will be able to receive some days of this treatment in Rexburg with Dr. Hancock, our local but acclaimed Pediatric Oncologist. Of course, this is all dependent on how things go. After 29 days, we will receive 7-10 more months of Chemotherapy. If everything goes well we will finish a maintenance period after 2 1/2 - 3 years. I am going to add a disclaimer here that I may be mistaken on some of this. My eyes are puffy, and my attention span is null and void... when the last nurse came to tell us she needed to teach us about Vincristine and other therapy treatments., I found myself asking if we were going to get hand-outs or if I needed to take notes. Then I laughed outloud, because I sounded like my students...(Hi everyone at MHS...I miss you!)

On a more personal note, Jace said our family prayer this morning. Matt and I found ourselves too choked up to say "Amen" because the entire prayer was devoted to Jace's big brother in Idaho. "Please bless that Hayden will be safe. Please bless that Hayden will be happy. Please bless that Hayden will have fun in school. Please bless Hayden to not miss us. Please bless Hayden to come back soon." Jace is so ill, and he's worrying about "his" hero, Hayden.

Also, everyone says I've been making them cry with my blog, so I'm going to end this one on a happy note. Yesterday after we had company, I breezed through the room rubbing anti-bacterial gel on everything. I even took Jace's X-Box controller from him to disinfect it. He raised his hands in a questioning manner and said, "Oh, come on!" (If you know Jace, you can hear him say it, right?) I explained, "Honey, if I don't disinfect it, you might get sick."

He put his hands out, palms up and motioned to himself and said, "Helloooo???"

The Mom

First, let me say thanks again. I'm overwhelmed by how many of you are reading the blog. My heart is full of gratitude for your support. As we had much company today and Jace was awake most of the day, I've neglected the computer. Needless to say I was shocked to see the Visitor Counter at almost 1800 in one day! (I added that counter with the post this morning).

We've had a good day over-all. The doctors actually decided to start the chemotherapy tomorrow, as Jace was in quite a bit of pain and shock from his surgery. He gradually improved, and he just fell asleep (11:48 PM). We enjoyed those of you who came to our rescue today with treats of support, hugs, M&Ms, magazines, SoBes, slippers, a blanket, Red Robin food, an air matress for the floor...and again so many messages.

I feel your strength. I was actually able to carry on a few conversations today, and although they inevitably contained a few strained, ugly crying faces, you'll be proud to know I kept the mascara on my top eyelashes all day. For a long time in my life I wondered if people really knew how to take care of people. I no longer wonder. I know. You are incredible people, and you are taking care of us. We are so blessed.

A few people asked me today, "Does he understand what is happening?" Hmmm. Good question. He's 6. I'm not even sure what is happening, and a really dark, ugly reality keeps throwing the facts in my face. While I was blogging early this morning, Matt tackled the stacks of information about treatment and Chemotherapy we've been given by the doctors and nurses. He read and highlighted and highlighted and read. At one point he started to read to me the side-effects of Chemo which my Jace might experience. I started crying, so Matt stopped. He knew I wasn't there yet. Not our baby. Not Jace.

So, Matt diligently proceeded reading without me, and when Randal and Wayne (our fathers, who we adore) arrived, the three counseled together. As so many times before, these men rescued me and allowed me to just be the mom-- to kiss Jace's forehead and tell him how amazing he is-- to whisper in his ear that the pain is going to go away, to rub his feet with lotion and ignore the stack of papers, and the signatures, and consents for treatment.


Even though I don't know it yet, many of you tell me it is going to be ok. When I look at this incredible little boy on a hospital bed and know that he is fevering again...and see the tubes and the monitors... and hear the beeps of a heartrate that is too low and then too high...and watch the pain filled eyes of the hairless children in our halls, I don't know.

Being the mom really, really hurts today...but I wouldn't trade it for anything in the world.

THANK YOU!

Matt and I found ourselves awake and silently watching Jace breath this morning at 4 AM. The longer we sat there, the sadder we became, so we decided to refocus and open the laptop. Together we read every comment on our blog and facebook, and because our dear Jace wasn't awake we allowed the tears to flow again. I'm not sure I can express what your support is doing for us. Although we have so many comments collectively, EACH message and heartfelt prayer offered in behalf of our family is fuel for our well-being. PLEASE understand we don't have the emotional strength to respond to your texts, calls, and messages, but we are reading, seeing, and feeling your love. When we are in Jace's presence, we smile, laugh and joke-- and because neither of us are leaving his side, we find it hard to talk on the phone or email. I know you understand.

Last night after Jace helped me write his message, we put the computer away for a while. After our room cleared of guests, Jace found himself in tears of pain from the surgery and the "port." In an effort to distract his tears, we opened the blog to read. One after another we read the messages together. We indeed feel loved.

This morning I organized our 20'X 30' room and found 10 gift bags full of crayons, markers, coloring books, footballs, treats, cards, gum, magazines, and toys. These all came within the first 24 hours of our stay. I'm overwhelmed by your love-- All of you: Those here, those at home, those who are commenting, and even those of you who are following our story quietly. Most importantly, I'm overwhelmed by the feelings of comfort we are getting from your prayers.

In the quiet of the night Jace was sad. We sang Primary songs together as I held his hands and rubbed his arms: My Eternal Family, I Am a Child of God, I Love to See the Temple, A Child's Prayer, Love is Spoken Here. When I came to the words at the end of the last song, Jace was falling asleep. I whispered in his ear, "I can often feel the Savior near..." and then I paused... because I could...I could feel the Savior in our room...and then I knew that He had just helped Jace fall asleep.

From Jace

Hey everybody. This is Jace. My mom is typing for me. Thanks for sending me notes. Thanks for all of the blessings. I love you guys.

Surgery Went Well

Jace is resting peacefully in our room. Both doctors said things went well. In the recovery room Jace was very sleepy, but calm. He complained briefly on his way back to our room about his "side" hurting. The "port" looks painful, so I'm sure that's what he was talking about. I'm including a picture of the place of entry in his neck, and then the port itself which sits on his left ribs. Running a finger from the orignal entry down to the port you can feel the tube just under his skin. Wonder how that's gonna work with Flag Football... Just kidding. Maybe this season he gets to be the water boy. Hey! Did anyone catch that bit of optimism I just displayed without even trying?

My long time friend and cancer survivor Travis Mitchell told me this on my Facebook a little while ago: "A young cancer patient once told me that I must be special because God only gave that kind of hardship to those who would be able to bear it. Jace is certainly a very special young man." Thanks Travis, I agree.

Acute Lymphoblastic Leukemia

A.L.L- I guess it's the good one...if it can be called good. The nurse told us if we have to have a cancer, this is the one to have. The official results from the blood came back, and it is A.L.L. Right now we are waiting for the operating room. Three procedures will be performed: Central Line Port Implanted, Bone Marrow Aspirate and Biopsy, and Lumbar Puncture. Tomorrow we will start Chemo.

Jace is sad and sick. His head hurts, and he is hungry. Because of the coming surgery he hasn't had anything to eat or drink since midnight. We are trying to talk the nurse into a Tylenol. There is an X-Box here in his hospital room, but his head hurts too much to play. I'm so sad.

On that note, I am loving the texts and calls...but I have to tell you all that Matt and I are a mess. We keep saying that we are finished crying and that we are going to be strong for Jace, but then we talk to one more person. PLEASE don't be offended if I don't pick up my phone. I can't talk or I cry. I just need a few hours or days. I love you all, and I am so grateful for your prayers. We do feel them.

Central Line

The surgeon just came and explained that they need to put in a "Central Line" for Jace to receive chemo. They will imbed a permanent tube in his vein on his neck so all treatments can be given there. We've also received word that Jace will receive a lumbar puncture (spinal tap) to see if the cancer has reached his brain, and a bone marrow Aspirate and Biopsy to determine which type of leukemia Jace actually has. Hopefully all of this can be done under anesthesia. The doctor has not been in yet this morning. We were told it will be around 9 before we see the attending doc.

Jace did receive a blood transfusion in the night. He is receiving the last of the blood now. He's sleeping peacefully, and Matt and I are just watching him. When the resident doctor explained the risks of the transfusion and asked if we wanted to go ahead with the procedure, Matt and I were both choked up. We couldn't answer. After a minute of silence, I asked her if she has kids. I wanted to know if she would do it for her own child. She said absolutely. We then agreed.

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 heartrate is too high.

They just took more blood, and they should have a positive match within a couple of hours. Hayden went with Randal and Joan to Megan's.

Jace is being such a sweetheart; when he saw my dripping tears while I listened to the doctor, he started rubbing my back. I was sleeping with him in his hospital bed, and Matt was sleeping on a chair that folds out right next to the bed. We have changed places now, because I can't sleep...so I'm typing.

The bloodwork tonight should tell us if Jace's Leukemia is AML or ALL. This means nothing to me now, but with the help of this internet I should be educated by morning.

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. We love you.

Leukemia

Monday, Jace awoke with a fever. We were in the mountains camping, so I thought maybe he was just worn out. He’s also cutting a tooth so, I thought it wasn’t a big deal. We gave him Ibuprofen and he acted great. That night when we returned home, he was too tired to help unpack. I even gave him the fun job of washing the four-wheeler, and I found him sitting on the side of it, leaning against the seat.
Tuesday morning he acted great, so I sent him to school. That afternoon when he returned home, he had a fever again. Ibuprofen again. No big deal. Normal when you are getting teeth.
Wednesday morning I had an early morning meeting. Mom came over and fed the kids and put them on the bus. I called her at 8:30, and she said, “Jace didn’t look very well…you better check on him.” I drove to the school and picked him up. On the way to the doctor, I looked over and realized he was very pale. They checked for the flu and took blood. No flu- no infection. But, “The Red Blood Cells are too low.” They told us to go home: they would run more tests and call us. At 4 PM they called and said it was Mononucleosis. “Make sure he gets plenty of rest and fluids.”
Thursday morning, the doctor called. He said, “I’m worried about that little guy. Let’s check his blood again and see what it’s doing this morning.” The results were the same as the day before. Apparently there were two tests that had been sent to a Boise lab, but we wouldn’t get results until Friday. Matt took the day off, and I went to work. Matt and Jace rented movies and Wii games and had a good boys’ day home. Jace was pretty mellow with a raging fever though. Tylenol and Motrin didn’t touch it.
Friday morning (9-11-09) Matt went to work, and I stayed home with Jace. Around 10 he 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.
Friday afternoon Matt came home for lunch to check on things. While he was there, I called the doctor again. Dr. Speakman said, “I’m just looking at his file right now. I think you better bring him in again.” When we arrived they drew more blood. They also did a chest x-ray and a urine test. Both looked fine. We also learned that while we were on our way to the office, the pathologist from the Boise lab called and was concerned. He said the red and white blood cells were too low, and the platelets were also abnormal. This alarmed Dr. Speakman, and he referred us to Dr. Hancock, an Oncologist in Rexburg. Dr. Hancock was off for the afternoon and still asked if we could come in. We met him at his closed office at 3:15 PM.
“Ratios bad…proportions aren’t right…virus causes one to be out of whack…leukemia causes all to be low…Primary Childrens …calling to see if they have a bed…get him on an IV tonight..draw blood to see if you can transport him...Jace has Leukemia.”
4:30 PM we go home… to Randal, Hayden, Wayne, Vicki, Emily B, Laura, Dayton, Carson, Skyelar, Daisy, and Gabriella. After hugging my dad, I went straight to the shower so I could cry. Matt went outside to talk to Randal and Wayne. Vicki, Em, and Laura packed our bags. Matt, Randal, and Wayne gave Jace a blessing, and we were out the door.
We are driving 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.