I wanna get up!!

Sooooo, Lyris shocked us all this morning when she said she wanted to get up. Her surgery was completed around 9:30pm the night before and the next morning she was saying she wants to get up?!?! Huh???

Lyris has had a lot of surgeries and this was the most intense one. She has never been so eager to get up and moving. It generally takes her a couple of days to get out of bed. She kept asking for physical therapy so we finally obliged. She still has some pain (of course). She’s not quite ready to hold a conversation but she’s doing really well.

Lyris- “Can you call physical therapy” Nurse-“I already ordered it”

Lyris- (pause)- “It’s in a package?”

Nurse- (puzzled) “Huh??”

Lyris- “You said you ordered it”

We laughed hysterically!!! Physical therapy came. She got up and went for a ride in the wheelchair. They washed her up and put her back in bed. She’s in/out of sleep but doing well!

Surgery Status

Lyris surgery started around 3. They just called (5:30) and said everything is going well and as planned. The surgery could take 4-6hrs. UPDATE @8:30pm. Finishing up. Going well. UPDATE 7/21 @7:30am. Surgery was completed around 9:30pm last night. She is in ICU. Everything went well. As long as everything continues to go well, she will be moved from ICU to a regular floor today. She is talking and surprisingly doing much better than previous surgeries. Keep the prayers coming!! Trying to get her to eat a little.

Rotation WHAT???

Trying to explain rotationplasty is difficult.  It’s easier to show you than to tell  you.  Check out this link Bailey on “The Doctors” Bailey was around the same age as Lyris when she had her rotationplasty surgery.  She is now a teenager in high school.  We had a chance to meet Bailey, her mom Tiffany and siblings a few weeks ago.  They have been wonderful in providing support and giving us a birds eye view in what to expect. They are the reason all of our worry and concerns have diminished.  You guys ROCK!! Thank  you so much!

Lyris will finally be able to be a kid again.

WOW!!! 5 Years ago yesterday (July 19th)

It’s funny how things happen. July 19, 2012 Lyris was just 6 years old and had her very first surgery to remove the tumor from her right femur. Who would have known 5 years later July 20, 2017 Lyris would be having her lower leg REMOVED by a process called Rotationplasty.

You think because the chemo is finished, the hair has grown back and the cancer is gone, life is GREAT! Welllllll, life IS great because we are alive and kicking. However, it’s emotionally draining on the entire family when we have to keep going in/out for surgeries. It’s especially hard on Lyris when she is unable to simply be a kid. Lyris right leg is shorter than her left, so she walks with a limp and has multiple shoe lifts. Lyris can’t run and jump. Lyris used to LOVE to roller skate, she can’t right now. Lyris has a bike, but she can’t ride it because she can’t bend her knee. Lyris can’t go to bounce houses and trampoline parks. WHY? Her knee doesn’t work and if she jumps her leg will break AGAIN. (We tried it once and that’s when we went in for another surgery last year in March) Everytime you have a surgery their are risks. Last year Lyris ended up with a staph infection after surgery.

People always say, “If I had known then what I know now” I would have done things differently. Honestly, in this situation, I think we would have done the same thing. When you hear the word “amputation” you automatically gasp and your in a state of shock. The first thing you ask about is other options. We tried the other options, they failed.

By the way, you just said Lyris name about 10 times.  Please keep saying her name and lifting her up in prayer.  Thank You!!

Out of the hospital and having lots of fun!

Can you say BUSY!!! We are making up for all of the time we were in the hospital. Lyris has us running around like crazy selling Girl Scout Cookies!!

Please forgive me for not updating. Our computer has a virus and is out of commission. Time to get a new one.

We will be back soon at the library right now, they don’t give you much time on the computers!

Interview with Fox 5 News Atlanta

http://www.myfoxatlanta.com/story/20755853/kennesaw-girl-determined

Lyris had a wonderful time doing this interview.  She made friends with the security officer.  He showed her around his desk and allowed her to check out all the security cameras.  She really enjoyed that and told him she wants to work there. She also, sold a box of Girl Scout cookies to the camera man.  That’s my girl!  Since she has completed her chemotherapy, she is definitely getting back to her normal outgoing self!  

Black Tie Gala fundraiser benefiting Children’s Healthcare of Atlanta

Black Tie Gala fundraiser benefiting Children’s Healthcare of Atlanta

Please join my family and I for this wonderful event! If you are unable to attend but would like to make a donation, please go towww.blacktiesforcancer.org. What would you do if it was your child?

Winning the Battles In Your Mind Inc will be hosting a Black Tie Gala/Fashion Show fundraiser for Children’s Healthcare of Atlanta Aflac Cancer Center. Lyris will be one of the featured kids at the event. She will also be walking in the fashion show. Please show your support for this worthy cause by purchasing your tickets at www.BlackTiesForCancer.org or make a donation. Any donation is a great donation! For questions call (770) 309-3655. 

This is a FORMAL EVENT!!!!! Ticket prices include a full course dinner, entertainment and a fashion show. Please remember this is for charity.

FINALLY….LYRIS LAST WEEK OF CHEMO!!!!!!

After almost 8 months of chemotherapy Lyris had her LAST dose at 4:30pm today.  Lyris will be home friday.  It’s not over, we still have to do follow up care  and scans to make sure the cancer is gone and stays gone FOREVER.  We will be going through another surgery soon to remove the port in Lyris chest. (this is how she received her chemo)  We will let you know when that will be as soon as we find out.

  The next two years she will continue with follow up and will be considered a survivor after two years of being cancer free!   i2012 has been a challenging and life changing year for our family.  All the prayers and love we have received throughout this journey has helped us get through.  We can’t thank you all enough! 

Stay tuned, because we will have a lot more going on and pictures to show.  You know Lyris hair will be growing back.  Can’t wait to share those pics with you. 

Catching up!

Since the last post so much has happened. Thanksgiving day we were in the hospital. We had planned on having Thanksgiving at the hospital with friends and family. However, Lyris ended up getting a very high fever around 1:00pm Thanksgiving day and we ended up cancelling all visitors.

December 15, 2012 Lyris went to the “North Pole” with dad. Children’s Healthcare of Atlanta and Delta put on a “Fantasy Flight” for the kids. All of the kids from the Aflac Cancer Center were invited. They picked up all the kids in Limos. They had a police escort to Atlanta Hartsfield-Jackson Airport where they boarded their flight to the “North Pole”. Once they arrived (they drove around the airport on the plane:)) They were greeted by Santa and Mrs. Claus and falling snow. They were interviewed by 11Alive News. (Watch Video) They had a GREAT time!! Lyris was sooooo excited. She told me that Santa lost weight. I guess he was too skinny.

CHRISTMAS- This was the best Christmas ever!! Big shout out to the fraternity Alpha Phi Alpha (Georgia State University) They brought Christmas early for Lyris and JD and even did a little step show for us.:) It was great! They were great! We have been so blessed to have great people enter our lives. We will be posting pics and the video of them stepping. Thanks a lot guys we really appreciate it. Christmas day- We were all home TOGETHER!! The kids opened their presents and we laid around the house all day. Lyris and I laid in the bed and watched “A Christmas Story” twice. Our lives have been so busy, it felt good to be home together doing NOTHING.