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Shelbi Mae’s Story

Thanks for stopping in to check up on me.  I am 16 and loving my new school and living in Georgia!  -Shelbi



 

 

Shelbi Mae is a vibrant and sweet 11 year old little girl. In early 2003 we began to notice some changes in the right side of her body. Her foot was turning as she stepped and her arm was exhibiting a lot of odd movements. After seeing several doctors and therapists an MRI was ordered where it was discovered that she had a juvenile pilocytic astrocytoma. This is a slow-growing low grade brain tumor that had grown large enough to begin to cause these physical problems on her right side. We were immediately referred to St. Jude Children's Hospital in Memphis,TN. Surgery was performed 2 weeks later at LeBonheur Hospital in Memphis by Drs. Sanford and Boop and they were able to take out 95% of the tumor. Shelbi suffered a stroke during surgery which left her with no mobility on her right side and loss of most of her right side vision. After 3 years of lots of therapy(thanks MMPT),she is pretty much back to where she was prior to surgery. She is a tough strong-willed little girl who is determined to do everything she puts her mind to.

On our last visit,July 11,2006 we were told that the residual tumor has begun to grow again. It has grown about 20% in the last year according to the MRIs. It is causing problems with both of her eyes as well.  This is something we never expected to happen and we are stunned,to say the least. The doctors feel that there is no time to waste and want her to begin chemo right away. We will begin visits on August 17 and have surgery to install a central line and begin a year to a year and a half protocol of chemotherapy. Shelbi received her first chemo treatment on my birthday,August 23,2006. Due to the course of treatment she is on,it takes 10 hours to administer the chemo and all the fluids that go along with it. She gets these treatments once a week,for the next year and 8 months. We are currently receiving them in Memphis,but hope to begin getting them in Shreveport(St Jude affiliate) soon. She has done really well up to this point on the chemo and keeping up with her schoolwork. We are very proud of our strong girl!!!

Update 05/01/08-Shelbi is finally done with her chemo protocol and we are thrilled! No more weekly bloodwork or trips to Shreveport for 8 hour treatments-YAHOOOO! We will continue to go to the clinic in Shreveport once per month to get her antibiotic by IV and have her port flushed for 6 months. She is looking forward to a summer filled with camp and even an upcoming trip to Disney!!!

Update 03/31/09-New tumor growth was noted in January 2009.  Shelbi began her 2nd chemo protocol on Jan. 19, 2009 which consisted of 52 weeks of treatment(Vinblastine) to be given here in Monroe-thank goodness.  She has just taken her 11th dose-only 41 more to go! Shelbi is looking forward to Camp Quality and CentriKids church camp this summer as well as a trip to the beach!

03/11/10-Shelbi finished up her 52 wks of chemo in Jan. 2010-that's 132 weeks total chemo she has endured and she is doing GREAT! Please continue to pray that her tumor stays stable so that she doesn't have to face any more treatment! She is now a happy, healthy 12 year old looking forward to summer!

08/29/10-Shelbi had brain surgery again on 04/14/10 and has just finished up 6 weeks of radiation at St Jude(30 treatments). She will have an MRI in late October to check the status of the tumor.

08/09/11-Shelbi's most recent checkups have shown that the tumor is continuing to shrink thanks to the radiation.  The February checkup showed the tumor was the size of a half dollar and the June checkup showed that it had shrunk down to the size of a dime! Praise the Lord! Her next checkup will be in October and we can hardly wait to see how tiny it is at that time(or maybe gone)! Until then we are just living life and enjoying our summer while Shelbi is feeling great!

04/22/14-Shelbi's most recent checkup showed her remaining small amount of tumor still stable-Praise the Lord! It's been 4 years since she had any treatment(chemo or radiation)......prior to this the longest she had ever gone without needing treatment was 3 years....God is Good!

08/2014-Shelbi started this school year off with a bang by getting news at St Jude we never thought we would hear.  Her doctor told us her tumor is "rock solid" and that she only has to come for checkups once a year! This is a monumental step in her 11 year tumor journey.  We truly feel like she has now beat this stupid tumor and can close the book on this very scary chapter of her life.  She is in 10th grade this year and looking forward to another season of basketball.  We are also talking about the possibility of college for her which would be a huge accomplishment considering all that she has endured and the deficits it has left her with.  We know that with God ANYTHING is possible and He is showing us that continually with her. 

Latest Journal Update

Best St Jude checkup EVER

Hi everyone! We've just returned from Shelbi's 6 month checkups at St. Jude.  First piece of good news: Shelbi has lost 8 pounds since her last checkup in February! Her body is still hanging on to some of the weight that was gained while on the massive amount of steroids 4 years ago during her radiation treatment, so this was a BIG accomplishment for her.  Next piece of good news: Her doctor's comment about the MRI is that her tumor is "rock solid".  Translation: Very, very stable-no signs of growth.  Her doctor is very serious with little to no emotion ever, so trust me when I say this was the equivalent of him doing a back flip! He was so pleased with her progress that......DRUMROLL PLEASE.....she now only has to have checkups ONCE PER YEAR! Folks, this is monumental! We started this journey 11 years ago.  For about 8 years, we had checkups there every 3 months.  Then for the last about 3 years he allowed us to come every 6 months.  He is the most conservative doctor at the hospital, so I figured we would never stretch past this point. Well, he stunned me last week when he said he felt sure enough about her stability that he was comfortable only seeing her once a year.  Cue the band and fireworks! We finally feel like she has BEAT this nasty tumor once and for all and that we can now close the book on this scary chapter of her life and focus full steam ahead on her future! Praise the Lord from whom all blessings flow! 

On a different note, we do have one prayer request that we would like to pass along to you guys. My Mom(Shelbi's Mama John) had surgery 2 weeks ago to clear a blockage on her carotid artery.  Her stay was supposed to be only overnight, however she is still hospitalized with weakness on her right side.  She is having daily rehab and we know firsthand from Shelbi's years of therapy what wonderful improvements therapy can bring.  Please pray for her to be able build strength and for her spirits to stay high.  Thank you all so much for continuing to pray with us through our journey!
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1 Comment

Jane Jones
By Jane Jones
SO thrilled about Shelbi's great report. God has certainly been with that sweet girl throughout this journey...and many prayers were answered for her. Will continue to remember your mom in prayer. Have been following her on facebook. I am so happy for you, your new life and job, and for Shelbi.. God is so good.