All Things Thankful

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

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

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

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

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

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

Finally! A New Post

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

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

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

"My Tummy Hurts"

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

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

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

(waiting for chemotherapy)

(being accessed and having blood drawn)

Count Dependent

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

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

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

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

Dimples

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

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

All in the Attitude

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

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

New Normal

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

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

Boo! I Scare Cancer

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

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

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

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