This is the photo that touched my heart.
This is the photo that touched my heart.
Everything is going well with Kaedyn. He had his weekly appointment at Shands on 6/5. On day 100, Kaedyn will have a bone marrow biopsy to make sure there are ZERO Leukemia cells and that he has ONLY donor cells. Please pray about this for our little guy. Also continue praying he has no side effects from all the chemo and radiation. There are issues that can show up as time goes on. We are hoping with everything he’s been through he suffers in no other way.
Thank you so much for loving him and for praying every day. We’ve come down a rough road since December 31, but we are thankful for how Kaedyn feels today. I hope the photo below touches you as it did me after I took it.
Kaedyn’s nickname is Rockstar given by Dr. E. At his appointment last Wednesday we received good news and he is doing well enough to move to bi-weekly appointments. We are double weaning the medicine that helps prevent GVHD. He is responding so well to the weaning process. Dr. E feels his body will handle weaning .1 of a dose twice a week. He has also completed taking medicine that helps prevent fungal infections. I am noticing Kaedyn has issues with sleeping. We have related that to the newest medicine added. Some of the side effects include insomnia, restlessness and other sleeping problems. Kaedyn is exhibiting some of these symptoms. He cries and acts uncomfortable multiple times at night. He tosses and turns most of the night. Sometimes I have to shake him as it seems he is having nightmares. When he doesn't sleep well Mommy doesn't sleep well. We are taking this medicine away, and going back to monthly IV medicine to prevent pneumonia. Dr. E wants me to text her in a few days to let her know if his sleep pattern has improved. Thank you for praying, and hopefully he will sleep better real soon.
Kaedyn is waiting for the day when he can go to a lake or river and catch a big one, lol!
He is doing fantastic and acting like a little toddler again! Recently we went to Bealls and to the Post Office. The doctor told us last Wednesday he can now go certain places with a mask on. Both places people recognized him. They were complete strangers to him but said, “Hi Kaedyn and so nice to see you.” When we were getting in the car he asked me, “why does everyone know me?”
I teared up and told him he was very special. I asked him if he remembered all the time he spent in the hospital and he says, “yah, I was sick and didn’t feel good.”
I told him so many people love you because you have fought so hard to live and you shouldn’t have to fight that hard. His response was, I’m special, but I’m not sick anymore.
He is such a joy to have as a son.
Last Wednesday was our weekly appointment at Shands. Kaedyn’s counts are slowly rising. His hemoglobin went from 9.0 to 9.1, so not much of an increase. His kidney function went up a little. It’s in the wrong direction, but we started the weaning process from the medication that is bad for his kidneys. If his kidney function remains at this level his kidneys will be fine. I still have to force him to drink more than he wants, but he handles it well. Dr. E prescribed a topical cream for the minor rash that is very hard to see. It seems like he is showing very mild GVHD of the skin. It is a good thing as long as it doesn’t get out of control. In the photo below his wonderful physical therapist is working with him. Kaedyn enjoys seeing her every Wednesday.
Thank you for your continued love and prayers.
It’s been a long 2 days, but I received the text yesterday from Dr. E. and Kaedyn is still 100% donor cells!
He continues to improve and be more and more like his spunky self. We’ve decided he’s either going to be an actor since he’s so dramatic or a lawyer because he loves to argue and get the last word in.
He’s grown so much despite all he’s been through. He needed new swim shorts because he’s out grown everything. We found matching shirts to cover him so sun exposure is minimal. Kaedyn loves his new swimming attire and changes about 5 times a day. Last night he wanted to wear his Spider Man swim suit to bed. I told him, “no you wear pajamas to bed.” Kaedyn said, “Dr.E says I am allowed to wear whatever I want and she is the boss so you have to listen to her.” What am I going to do with him? She really did say that but she meant when he comes to clinic on Wednesday.
Please continue to pray Kaedyn remains 100% donor forever! He is only 38 days from going home and best of all being with Bubba.
We are at Day +48 and all continues to be wonderful.
Yesterday’s visit at Shands was a little less terrifying for Kaedyn. He still frets and cries when they access his port. At least he communicated and laughed the rest of the time with the team. He even walked into another room with his favorite clinic nurse.
His blood work looked great. Dr. E almost moved his appointments to every 2 weeks, but changed her mind until Day +60. The weekly blood work is reassuring to me, so I didn’t mind.
Kaedyn loves to play outside. He rides his John Deere tractor and sings. We also go on a walk just about every day. He has his little fish and today we purchased 3 tadpoles to observe their growth process. I figured this would keep his mind off collecting new bugs (since he is not allowed to touch any critters) and he wants to see his cat Pearly. We are still 4 1/2 months away from him having his cat. Aunt Berber is taking the best care of her, so we are happy she is safe. Please continue to keep Kaedyn in your thoughts and prayers.
A thank you to Sophia for the monster costumes, National Church in WV, Boggs, Barbara Dillaway for the Kaedyn super hero book, and to Rachel Frabosilio for the super hero books. We appreciate all the love Kaedyn receives whether it be a wonderful comment on FB, a get well card or a gift.
Today is the Golf Tournament at Ocala Gulf Club. Tee time is at 1:00. We will have KaedynLove shirts and bracelets for purchase if anyone wants one of those items.
I am so thankful to all those who have put much time and effort into the fundraisers for Kaedyn and our family.