Angels

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

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

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

Hayden Speaks

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

Hayden

Consolidation Day 8: Lumbar Puncture

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

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

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

Part Two: Dancing in the Rain

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

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

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

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

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

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

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

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

Dancing in the Rain

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

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

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

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

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

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

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

Roller Coaster

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

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

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

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

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

Birthday Eve

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

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

Giggles

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

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

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

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

Quick Update

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

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

Hair

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

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

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

"Never Alone"

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

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

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

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"

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

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

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

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

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

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.