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."
Subscribe to:
Post Comments (Atom)
Good morning Amy,
ReplyDeleteIt's always so nice to read a new post. You are such a talented writer...you know how to make me cry. :) I know that you probably feel weak, but your strength is always evident in your writings...as is your testimony. I sure appreciate the chance you are giving us to check up on your family. I think of you often! And just keep stroking his sweet cheeks...I'm sure that is exactly what will get you through this. Oh and the splat balls will probably help a lot, too!
Love you all! Stacie Dye
Hi Amy and family. Just wanted to write you a quick note and tell you that we're thinking about you. Ethan is home from school today and he asked to look at Jace's blog. (we look at it just about everyday) Strange how Ethan feels so 'connected' to Jace without even knowing him. Jace, you are such a tough dude and you are included in our prayers everyday. Even our little 2yr old will say "and bless Jace!!" at the end of the prayer if we happen to forget. I asked Ethan if he wanted to leave a little note for Jace so I'll type it in for him:
ReplyDeleteHi Jace, my name is Ethan. I am 6 like you and I have leukemia too. I saw in your pictures that you have to have spinals too. They are not my favorite thing. But my mom gets to be there with me and the best part is when you wake up, you get to eat whatever you want!!! Did they give you that cool cream to put on your port? It makes it so you dont feel the poke at all. Tell your mom chocolate ice cream is the best for medicine. I love it!! Have a good day. Your Friend, Ethan
Amy and Jace
ReplyDeleteOn my way out to your house yesterday I took a wrong turn and drove by the school. All the kids were out running...I'm sure some of them were running their "Pacers for Jacers". It was neat to see what everyone has been talking about. And It was good to see you Jace. I'll bring bread and jam out anytime you want or need if that helps you feel better. It's Jaxson's favorite too. You'll have to let us know if the Blink game is fun. Stay strong!!
Love
Melissa
We are thinking of you and your family everyday. Thanks for keeping us updated. As I always say, "The only way to get through it is to go through it." Stay strong!
ReplyDeleteRon & Maria Nate & Family
Thank you, Amy. I look forward to your updates everyday. You and Jace have taught my family and I so much. My little man asks about Jace every day. He wears his IRONMANJACE bracelet faithfully. He was looking forward to playing with his friend after his football game last night. When we arrived home he said he wasnt going to play if Jace couldnt. He doesnt know Jace, but you would think Jace was part of our family. I dont usually post a comment, but I thought I would share with you a prayer Triston said for Jace. He said please bless Jace....that his pain will go away....please bless Jace's mom that she will not forget that you love her.....please bless that Jace will keep singing.....please bless that Jace will have a good sleep. It was all I could do not to cry. I was so proud of my little man. I realized then that your experience has brought the spirit into our home and my son is feeling it so strong. I thank you so much for that. Jace - you are an incredible little man. You are such an inspiration to so many people - even people you dont know. Amy you are absolutely amazing. We love you. Chris, Chyanne, McKadee and Triston Smith
ReplyDeletewe are still thinking of you every day. I now have "small enough" on my ipod and listen to it every day. I love that song and think of little Jace every time I hear it. You have made a great impression on my heart and made me a better person! Stay strong, we are all with you. Lots of Love!
ReplyDeleteWhat a great kid Jace is to try to be pleasant although he is so ill and not able to go outside and play! I gain strength from you, Jace, and your family by reading your blog. I cry and feel such a sense of the Lord's love for his "child of god". Thank you for the words that you write as you strengthen all of us that read the blog. Weak, I don't think so Jace was sent to parents who could also be strong and beat this! We'll continue to pray for you! By the way do you need anyone to start making daily food deliveries to your house?:)
ReplyDeleteAmy-
ReplyDeleteI believe that our families here on Earth were our best friens in heaven. I believe we chose those people we wanted to teach us and help us through life. I'm sure Jace said, "Bring it", and I'm also sure you and Matt and Hayden were right there with him thinking that as a team you can handle anything! And you can!!
Love you!
Well everyone on here has pretty much said it all! You are an amazing little family and has taught me so much!! You are such a strength to me and to so many others! Thank you so much for the examples, testimonies and stories you have shared. They have been such a strength to me. I am glad to hear everything is going well. You guys are in my prayers daily! Stay strong! Things do get better! Promise! It just takes some time unfortunately! :)Lots of Love
ReplyDelete~Chelsea
You do not know me but I have been following your blog since I found out about your sweet little guy. What an example you are to everyone. I can't imagine going through what you are going through and I am sure your days are more difficult than any of us could ever imagine. You are all so strong though and have such a strong support around you. Amy, I am sure you feel you did not sign up for this. Some things are like that. You wonder why on earth would I have agreed to this, but yet our understanding was so much greater then than it is now with our limited vision. Have faith that all will work out for the best. You are a wonderful mother. I admire you so much! I have a dear friend who went through this with her two-year old little girl a few years ago. What a heartache it was to see them have to face this, but it blessed all of our lives in ways I could never explain. Sarah is now a happy, healthy six-year old who is learning to read. Please keep writing. I love to read your words. They are words of inspiration to me. God bless you Jace. You are amazing!
ReplyDeleteThanks for sharing! Bobby Jo Campbell, Blackfoot, Idaho
Amy, Matt, Hayden and Jace,
ReplyDeleteReading this blog has reminded me of one of my dearest friends who has had cancer in the last 2 yrs. and is now recovering. She loved it when I brought her shaved ice from Sno Shack. So....today I'm bringing you my protable cube shaver with the tigers blood flavor so that when you need some relief from the sores in your mounth or just something refreshing, you can walk out in your garage and order one up. You'll have your own Snoasis/Sno Shack right at your door. My prayers and thoughts are with you. Everything will be alright. I know that from experience. Your Friend and co-worker, Robyn