Friday, May 25, 2012

Since my last post, Kyli was able to go home, but had to return after three short days because her temperature spiked. She has been at the hospital ever since so she can receive antibiotics via IV to help treat the infection she has no white cells to battle on her own. Her hair is very thin now and virtually gone in the back of her head. She is doing a little better now and she should be able to go home near the end of the month!
Technology is a wonderful thing! Through the wonders of Facebook, my son and his wife have been able to inform family and friends who use Facebook of Kyli's progress instead of writing hundreds of messages and making as many phone calls. Kyli's Kause has drawn attention from around the world! One of my son's friends from school days, Joe Bryk, is now a sergeant in the US Army and is currently deployed to Afghanistan. He and his unit sent a package to Kyli that contained a card, letter, and a combat patch worn by the soldier.
Somehow, this gained the attention of a news channel in nearby Orlando, Florida and the next thing we knew, a news crew showed up to do a story on Kyli's Kause! They were there for about an hour and were sooooo nice. The news anchor, Tracey Jacim, is the reporter who actually came to the hospital and Kyli really warmed up to her considering her steroid-induced mood swings. I managed to avoid the camera but it was so interesting to see how it all happened. They did at least 45 minutes of video and interview to create the story that took less than five minutes of air time.
I have included a link to the news story if you care to watch it. My son and his wife were so nervous, but I think they did a really great job! And Kyli? She just had to be her sweet self!

Kyli's Kause via FOX 35 News, Orlando

As for my creative time, I will be on summer break in two weeks and should be able to get in more stamping and paper crafting. I went on a stamping retreat last weekend and made a pile of cards that I will be able to share as soon as I get them photographed and uploaded. I want to go through my stash and send a bunch to Joe's unit in Afghanistan. He personally sends out many letters and cards to friends and family, so I know they will be appreciated. They get many of them from Operation Write Home.
Bryk, Joe, B Co. 296 BSB, Khandahar Airfield, APO AE 09355 is his address in case anyone wanted to send any to this group also. Of course, they could always be sent to his unit and others through Operation Write Home. I'm pretty sure that for them to be sent to a unit, you have to have one of the soldier's names specifically on the address.
I have a long holiday weekend and I am planning to have a slumber party at the hospital with Kyli one of the nights so that Mommy and Daddy can both come home and get some things taken care of for the move to their new home. I also plan to get in some stamping!! Thanks for stopping in!!

Wednesday, May 9, 2012

Coming home

My Kyli will be coming home tomorrow!! She has had a very dramatic week and a half. She spent two days in the peds ICU and has had good and bad days. Every day, though, showed improvements over the one before in at least some ways. The picture above was taken just after returning to the peds oncology ward from PICU. She was still in considerable pain and cried a lot.
Yesterday, she started physical therapy to get her up and walking again. It started with some lessons with Chemo Duck. She learned all about the different instruments the doctors use and why they use them. She was very interested in learning all she could! As you can see, she has no shortage of friends in her bed to practice on!
Today, she was up walking around the floor with her little shopping cart and visited the Tebow room several times to play games and create with her Play-Doh...she sure loves that stuff. She did all this activity after a second spinal tap to put more chemo into her nervous system to help prevent relapse later on.
BTW...they call it the Tebow room because the room and entire ward was refurbished and provided X-Box systems from the raffle sales from Tim Tebow jerseys that he donated to the hospital. Pretty awesome, I think. It's a great room for the kids to play in, and not just with the video games.
This is going to be a very busy weekend. They will be moving into a temporary place while a new home is secured that better suits her medical needs. Then three visits scheduled for next week back at the hospital and cancer clinic with about the same number of visits each week for some time to come. She will lose all her hair by the end of the month and will puff up from the steroids. I just know she is going to be a survivor...she's too tough to do otherwise. We finally received the good news verifying our belief that they would not find the Philadelphia Chromosome in her!!! So glad of that as it will make the treatment of the cancer much easier.
Thanks so much for the prayers that have been offered up for her! The family appreciates every one and we are convinced that it was the power of prayer that has helped to ease her way in the battle she is facing and for the survival of so many others!

Sunday, May 6, 2012

Taking a time out

Hello to the blog world. I know that I don't get on here as frequently as I'd like to, but I think there is going to be an even greater decrease in my presence here. The unthinkable has happened to our family. My precious granddaughter Kyli who is only four years old has been diagnosed with Acute Lymphoblastic Leukemia. She has been at Shands Teaching Hospital in Gainesville, Florida for the past week. While her prognosis appears to be good because it was caught so early and the many factors that are in her favor, she has an extremely difficult three years ahead of her.

I have to say that my son and daughter-in-law have stepped up and handling the tough role that has been handed to them in a way that makes my heart burst with pride. And that sweet little girl is being so strong and tough! It makes me soooooo sad that she has to learn to be so tough at such a young age.
A Facebook page has been set up for anyone who would like to keep up to date on her progress and stay in touch with the family during her treatment. If you go to the page and "like" it, you will receive updates in your newsfeed whenever you login to Facebook.
I just wanted to let ya'll know why I won't be on here as much as I'd like. Prayers are greatly appreciated...we truly believe in God's power to heal and bring comfort. Thanks in advance and big cyber hugs to my blogger friends!