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.
Archive for the ‘Uncategorized’ Category
We are at Day +48 and all continues to be wonderful.
I guess an Email went out stating Kaedyn is back in the hospital.
I’m not sure how it happened but that is not so. Kaedyn is still doing fantastic and loving being home!
The simple things! We love sitting outside for breakfast, lunch and dinner. We enjoy listening to the birds and feeling the wonderful breeze as much as possible. We even don’t mind the occasional rain storm so we can hear the rain and thunder. These are all things that we missed so much during the last 4 months.
A good friend told me, she has noticed Kaedyn’s skin color improve and his cdark circles are fading. As Kaedyn’s hemoglobin increases, his skin color will look more and more normal.
Kaedyn is continuing to feel better. He is walking a little more every day. He feels confident enough to walk without holding someone’s hand all the time. His walking speed and energy level has increased.
I am so proud of his determination and strive to keep pushing himself.
Thank you all for your continued love and prayers. Please keep praying for Kaedyn to remain cancer free forever and without any side effects from treatment. Also for all his little
buddies we have meant along the way.
We love you Kaedyn followers!
Day +36 and +37
Kaedyn is enjoying the outdoors, but can only handle the sun for a short period of time. He asks to go inside and rest quite frequently. The other day he asked to go somewhere fun to play. He remembers everyday picking Bubba up after school, going to the park and playing a little while. It is difficult to explain to him why things have changed for now. He still can’t have fruit other than a banana or an apple. He can’t play in sand, dirt, or touch animals or bugs. Kaedyn can’t go to public places, and hardest of all he can’t be around kids.
We are taking every extra measure to protect and keep him out of the hospital. It was really tough tonight to see him cry when his Daddy had to leave. Daddy had to get Bubba from his Mom’s. Day +100 will be a wonderful day. Kaedyn and his Bubba will be reunited!
Kaedyn was moved to once a week appointments already. This kid never ceases to amaze me. His kidneys are great, indicating he is drinking plenty. He was very, very upset today to visit the hospital. He cried for about 30 minutes. It was so bad he had to be given medicine to calm him down. The poor baby is scared to go back. Typically, I don’t like him to get the extra medicine, but he was terrified and inconsolable.
The most important and wonderful news… Kaedyn is 100% donor cells. That means Kaedyn’s marrow is not producing Kaedyn’s cells which is
exactly how we want it. They are not finding any Leukemia cells in his marrow either!
Praise God and keep praying.
His sign says, I’m Home and Loving It! But Kaedyn decided to really decorate it.
On our drive home I tried to hold it together, but the tears were flowing. The beauty of the trees moving with the wind, the spring flowers, the cows eating the grass and Kaedyn so happily looking at these things he missed for 4 months brought tears of joy. I’ve missed the simple things so much. For about 2 months I’ve thought about what I would eat, when we came home. Kaedyn and I talked about the first thing he would play with. He told me tonight he never wants to stay in the hospital again. I wish I could promise him he’ll never stay in the hospital for that long again.
I am so grateful to all of you that are following Kaedyn. Your kinds words mean so much. The love you have shown him in many ways has been truly inspiring to all. The hospital staff says Kaedyn is famous, but I say he just has the most amazing fans. We are blessed to have so many people that love him. Please continue to follow Kaedyn as his journey is not even close to being over. This is just the start to a new beginning for him.
I’m asking for prayers for Kaedyn’s buddy Ayden. He had emergency surgery tonight to remove the blockage from his shunt. For those of you who don’t know Ayden, he is the 3 year old of Tiffany Henke in Ocala. She and I have known each other for a while. She found out maybe a few weeks after Kaedyn’s relapse diagnosis, her son has a rare brain cancer. His tumor is wrapped around his Central Nervous System and surgery is not an option at this time. He will need chemo to shrink the tumor and they hope to remove it if possible. Ayden has lost his vision in one eye and can barely see shadows out of the other. It seems to the Doctors he may be permanently blind. Ayden is a precious little guy and has a heart of gold. We have fallen for him and would love to make him smile. He is in the ICU at Shands for a week or so following his surgery tonight. The shunt could not drain properly so he now has a tube coming out of his chest to drain the fluid from his tumor. After a week in the ICU, he will need to stay on the 4th floor for a few weeks. Ayden can barely see and will be cooped up for a while. I spoke to his mom tonight and I want to help her get Ayden an IPad. We’re hoping he might be able to see shadows if it is close enough to him. If you would like to help you can go onto his page Ayden My Angel. Please like his page and pray for our dear little friend!
Day +30 & +31
Kaedyn is drinking plenty and eating decent for any 3 year old, much less a 3 year old who just had a BMT. Saturday his weight was 14.3 and yesterday it was 14.7, indicating his calorie intake is improving.
I am so proud of his determination.
Tomorrow his line will be removed and he will have a Bone Marrow Biopsy. Please pray all goes well and they see no Leukemia cells.
Tonight should be our last night at Shands.
The nurses who aren’t working tonight or tomorrow are giving me hugs, and say they will miss us. It’s strange because as much as I want to leave here, I will miss them too. They have become my friends and like family. One of my favorite nurses said last night, this has been a long 4 months, but at the same time such a short 4 months.
In 4 months we found out Kaedyn relapsed, he was put back into remission, and received a transplant in which he is already 32 days out. Wow!
He is amazing!
His Doctor and her team, Kaedyn’s donor, the staff here at Shands have worked so hard to bring Kaedyn to the wonderful place he’s at now. Of course your continued love, support and prayers have helped him tremendously.
Day + 28 +29
I can’t believe we are one day away from day 30.
Tuesday will be Kaedyn’s last day at Shands for this current admission. In the future there will probably be 24 hour admissions for fevers, but nothing in comparison to the last 4 months.
I’m so excited about staying at Nan Nan’s house, and only being 5 minutes from our house. I hardly sleep at night thinking about having some normalcy in our life.
Kaedyn is doing well. He is eating about 1/2 of what he ate before he relapsed. It is common for children not to eat sometimes for several months following a transplant. His Dr. said he needs to drink 35-40 ounces of liquids a day. That is about 3 bottles of water, and is difficult for any 3 year old. It is important that he have drinks with calories. Presently he is drinking about one bottle of water which is 16.9 ounces, a small apple juice and some soda. Kaedyn is not into juice and thinks anything beginning with the word Pedi is gross. I’ve always pushed water and allowed a few sips of soda, but calories are essential now. We are trying whatever he will tolerate other than water.
If he isn’t drinking at least 35 oz. a day a feeding tube will be placed Tuesday during his other procedures. We are trying our hardest to reach the goal tonight. Please pray these next couple of days Kaedyn’s fluid intake will increase, and it won’t be such a battle.
During these 4 months, Kaedyn has received many boxes of toys and so many get well cards. I really appreciate all of your love for my angel.
Please continue to pray for my angel to continue to impress the wonderful staff here at Shands. And for all of our buddies we have made along the way.
Today was a great day. We left the hospital! Plus Pap came to visit. Kaedyn couldn’t have been happier.
Kaedyn continues to do well. His counts are staying still staying around 1500. He has gone 6 days without a blood product and seems to be holding steady. If only he would drink enough. He is trying some of his old favorite foods so I know his appetite will come back. My sister and I devised a plan to encourage him to drink more. He did better being out of the hospital that’s for sure.
When we were playing at the Ronald McDonald House, he twisted his angle or “nankle” as Kaedyn calls it. His little bones and legs are so weak. My dad could barely hold it together because you can tell how weak and fragile his little body is. I am trying to remain strong and remember this too shall pass. For us Momcoloigsts we learn to be grateful that our child is alive because so many die of their diseases. As long as Kaedyn remains cancer free, he will someday soon be able to live basically a normal life.
I love hearing and knowing that we are one of the easy patients now.
I have to say that we are blessed to not have much to report other than Kaedyn’s wonderful progress.
He is eating!! Not much but a little. And he is drinking better. According to the team, he is not even close to being ready to go home. He needs to be drinking a liter or 2 bottles of water a day. He is not even finishing a half of a bottle at this point. Most 3 year olds would never drink that much so this is very difficult.
We have a’lot to work on for the next 6 days. Every day he makes a’lot of progress so I’m proud.
He is feeling very well for all he has endured, I am amazed at my 3 year old’s strength. He is the most amazing person I have ever seen. I couldn’t be any prouder.
Please continue to pray for Kaedyn’s appetite and for him to be a thirsty little guy. Also for his GVHD to stay under control.
And for all his little buddies here at Shands.