Stay Strong:
Through talking with friends today about some of the things that Denny and I have been reading about online from St. Judes, (which hadn't occurred to either one of us yet) is something of importance and should be shared. It's just something that we should all keep in mind for anyone who will be or is battling a long-time illness. Where get well soon wishes are totally appropriate for someone healing from surgery, it isn't so for someone who has a longer road ahead of them. We all thought this was so interesting and it just hadn't even crossed our minds. So, instead of saying, "get well soon" now you can say, "stay strong". For some of the kids at St. Judes and other treatment centers, they can be there for up to three years or longer! So, get well soon becomes redundant. Stay strong has so much more power and love behind it. Don't you think? I will keep this in mind forever. Words just have so much power.
In the works:
One of the things a few of our friends are working on are some t-shirt and wrist band ideas. We have come up with the PERFECT design and logo. I can't wait to share it with you all. Heck, I can't wait to have one of my own! We know that what lies ahead will be so tough, but we know we will be looking back soon with even more love in our lives then we could imagine.
How is Kayla?
Last night Kayla woke up at 2am screaming in pain. She just couldn't get her body to relax and her neck was in spasms. So, after almost a week of not needing hardly any pain medicine, we decided through exhausted eyes that she should be given a tiny bit of Valium to relax her muscles. It helped a little but she was pretty uncomfortable even still. I knew that today would be a long day between all of the people coming and going all day. As soon as the door shut after the last of her amazing friends left, she just broke down. She was in so much pain and was just so tired. Dad took her downstairs and turned on her heating pad for her neck (that usually helps a little). He read her a story and now she is snoozing away. I will have to wake her up for dinner in a little and hope that she is feeling a tad better by then. We promised her that tomorrow would be super low-key and there would be no visitors. Just the four of us packing and getting ready for the big trip. After all, it's all about what is best for Kayla right now. Today was awesome, but tomorrow she will need her rest. Anthony will be at school for 3 hours in the morning and then we will have the rest of the day to spend hugging him and having some good quality time before we have to say, "see you soon" to our little guy.
Ok, forget snoozing. I can hear her downstairs crying out in pain, "oooowwwiiieeee back of neck" over and over. I hope she isn't regressing. Is that possible? I have a lot of docs and nurses reading this. Feel free to throw us some advice.
Poor girl! :(
hi :). i continue to follow your posts and journey that you all have been on. i am a cancer survivor (breast cancer), also a cancer nurse and friend of michelle in chico. having been to st. judes myself to check out a possible job i can say that that place is like heaven meeting earth. amazing people, amazing families all in one place. it sounds like you are going to be in the perfect place for kayla and your whole family :). i continue to pray for you guys and look forward to more amazing stories of provision even admist the hard days ahead. sending lots of gentle hugs to you over the web :).
ReplyDeleteSTAY STRONG KAYLA!!!
ReplyDeleteIt will get better, I promise!
Love you,
Neena
Stay strong Kayla, but OUCH! I'm sure the day of activity was hard on her physically, but on the other hand really good for her soul. I can imagine as a mother it's so hard to balance, because she does need doses of normalcy, her friends, to keep her soul strong, but it does impact her physically. Poor baby & Ann don't beat yourself up! Hope this morning she is free of pain and you can have the much needed day to prepare for the journey ahead. I cannot wait for you to be at St. Jude's, to be surrounded by families and patients that are going through the same struggles, those relationships will be invaluable during this time, you know I encourage you to embrace it and them 100%. These families will step in/ replace those of us in your home "hub" and I thank them now for coming into your life during this time. I can't wait to hear all about them and St. Judes, it sounds like a wonderful place. You will come through St. Jude's with not only health and a deeper appreciation for life, but lifelong friends I just know it. As you know, our struggles with our children's losses is how Jennifer Wu and I initially bonded and have been best friends for a very long time now. So this is goodbye for now my dear friend, you know you are never far from my mind, we love and support all of you. Jayna
ReplyDeleteCan't wait to see the T Shirt Idea! After all, Geoff and I had the first Team Kayla Tee Shirts! :) Stay Strong Angel, for your strength will move this mountain and on the other side are many, many rainbows!! Love you all! Safe travels to Tennessee. We will be waiting for our Skyping moment! xoox
ReplyDeleteAn idea: to use in place of a 'heating pad' is one of those bags made with lentils/rice inside that can be put in a microwave to be 'warmed' (NOT HOT). It then can be placed on her neck which is first covered by another layer of cloth. Being a bag full of tiny beans/rice it easily molds to her body and the best is that it supplies moist heat which penetrates to give more relief that the dry heat of a heating pad. It would also be able to use on the long plane flight....
ReplyDeleteThank you for all your sharings, and guidance for how we can be of best support. Annie, You are awesome Mom....listen to you heart and gut--no one knows Kayla like you do. That plus your great communication ability with her....to help her identify & tell you her needs----all are KEY to helping her.
Safe travels----the weather in Memphis has been extra nasty these last few days (flood warnings)...but should be gone by time you fly there. God Speed and Be with all of you
I am sorry K was so sore last night. Poor little thing. The girls were so happy together! We are sending lots of virtural hugs today as you prepare to leave and we look forward to virtual Skype playdates when you are there. Lots and Lots of love, and big hugs!
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Praying for safe and pain free travels. Don't know if you're gone yet, but I have the a new rice filled bag that my sis made for my sale this past fall & had 2 left. They work wonders for my neck pain, so if you need it, it's yours. I could have Bess drop it by right away. If you've already left on your journey to Memphis, then know that there are many praying for the journey ahead. Love you dear ones and STAY STRONG & ALWAYS HOPEFUL!
ReplyDeleteThe rice bag works really well and you can also put aromatherapy oil drops on it too (lavender, peppermint). Safe travels! We are thinking of you always! Love you, Tomaz, Diana and Isabella
ReplyDeleteStay strong and be positive for the next leg of your journey. We will all be thinking of you, praying for, and sending positive energy to the Dehnert family.
ReplyDeleteWith love,
Chuck, Pam, Nick and Sophie
Tomorrow is a new day, of a lot of "new"... new hope, new friends, a support system, all that will be life changing. I have always known your strength to be amazingly stong, but I know the people you meet in Tenn. will help you along when you need it. We back home will always be here, praying daily, fighting for Team Kayla every step of the way (can't wait to see the T-shirts by the way.) Stay strong my friend, for this tough road ahead - love and God will get you through it. We wish you safe, pain-free travels.
ReplyDeleteOur love to you all - Joey, Paige, Olivia & Ava
awwe poor girl. Yes kids do regress when they are going through a lot. We learned about it in school. When kids are in the hospital, or suffering from an illness they can regress. I think the same is for adults. I know when I am sick I want to be babied and whine like a kid. Its only temporary. Just giving her the support will keep her well. Keep staying strong!! You will all get through this.
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