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Emily’s Story

Emily was diagnosed with bi-lateral Wilm's tumors on September 21, 2007.

Diagnosis changed November 28th to unilateral Wilm's tumor, favorable histology, stage 3. Right kidney tumor classified as an adenoma.


On September 20th, 2007, we took Emily to our pediatrician after she had a fever of 104.7 degrees Fahrenheit. Upon examination. our doctor felt a large mass on Emily's left side and sent us to get a sonogram; it was there that the radiologist found a large tumor. The advice he gave, which was echoed by our pediatrician, was to take Emily to Children's Medical Center in Dallas to have a more conclusive set of tests done; including a CT scan and blood work. After 13 long hours in the ER, the doctors sent us home with a diagnosis (bi-lateral Wilm's tumors) and a plan of action.

Emily's tumors were such that the traditional course of treatment could not be given. The CT scan showed that Emily had a 9 cm tumor on her left kidney and a more dangerous (because of its location) smaller 3 cm tumor on her right kidney. The traditional procedure would call for an immediate removal of the affected kidney with chemotherapy to follow. Since both of Emily's kidneys were affected, she could not have surgery until the tumors had reduced in size. It was hoped that surgery could leave healthy partial kidneys behind while removing the shrunken tumors. In order to shrink the tumors, Emily began chemotherapy and had 15 rounds over 26 weeks. Emily's last chemotherapy was on March 20, 2008.

On September 24th, 2007, Emily had surgery to install a port into the left side of her chest; below and to the left of her nipple. The surgeon suggested this area so that scarring could be hidden by the strap of a bathing suit. The port is an amazing device in that it makes blood draws and chemotherapy treatment less painful for the patient. Emily had her port taken out approximately three months after her last chemotherapy, in July 2008 at Memorial Sloan Kettering in NYC.

On November 13th, 2007, we flew out to New York City to have Emily's surgery done by Dr. LaQuaglia and Dr. Kayton of Memorial Sloan Kettering Cancer Center. These surgeons came highly recommended and after meeting with them a month earlier, we decided that they gave Emily the best chance at survival and long term health. The surgery date was November 15th and the actually surgery itself lasted approximately 9 hours.

The pathology of the tumors came back 11 days later and Emily's diagnosis was changed to unilateral wilm's tumor on the left kidney and benign tumor (adenoma) on the right kidney. Emily had 6 rounds of radiation on her left flank and we were sent home to complete her care in Dallas.

On March 3, 2008, Emily's drainage tube (still in since surgery in November) accidentally pulled out of her right kidney. We flew back to New York and on March 6, Emily had a stent paced in her kidney and ureter by Dr. LaQuaglia.

We flew back to NYC in July to have Emily's stent taken out but due to unforeseen complications with her ureter, we left NYC needing to finding a surgeon who specialized in urological reconstruction. Emily's ureter had formed a kink, due to the tumor removal surgery, that would not allow for normal urine flow into her bladder. Before we left NY though, another nephrostomy catheter was inserted through her back and into her kidney that would allow the urine made in that kidney to drain out of her body. Hydronephrosis of the right kidney was beginning and needed to to be alleviated.

We found a surgeon in Dallas at Children's Medical Center who was able to reconstruct the ureter. In September, 2008 Emily underwent a successful surgery to cut out the kink in her ureter and attach the remaining ends together. There were other unforseen complications with this but all was resolved within a couple of weeks.

Emily is now off treatment and we have been given her new road map for the next 12 years. MRI's, x-rays, sonograms and a host of other tests will be done to carefully monitor her health.

Latest Journal Update

Volley-lite

Hello again.

Last week Emily had her annual checkup at the Children's Health ACE clinic in Plano. Blood was given, urine was collected, and an echocardiogram was performed. All results looked normal and that's cause enough for celebration! The next echo will be taken in two years and that's to monitor any latent effects of the doxorubicin she was given in chemotherapy. This particular visit to the clinic was "fun" because we took Emily's youngest sister, Katie, with us. Nothing quite like a three year old to hold your hand when you need comfort or to make you smile when you're feeling anxious. Just imagine what she did for Emily!

Our 'big girl' is now 11 years old and in 5th grade. She's an excellent student, active Girl Scout, and becoming a decent volleyball player. Considering that Emy finally gave up dance after 8 years, playing a new sport is something she's still adjusting to. Dana and I see progress with her serving and passing but mostly we notice the enjoyment that it gives her to play with good friends. That's really all that matters to us anyway. Of course beating certain teams with obnoxious coaches and kids really would be nice too. :)

The fact that there's not much health news to report on a Caringbridge site sounds strange but it's a good feeling for sure. Dana and I use this site more than anyone else since it keeps a record to refer to when our brains are fuzzy. When did she have her big surgery? How many rounds of chemo did she get? Where were we in Manhattan? You get the idea. The purpose of this site is to inform and that's why I still post after all of Emy's checkups and tests. Someday Emy will read these entries herself and I want them to be there for her education more than anything else. Finding out that she's "becoming a decent volleyball player" and wasn't already a 'volleyball goddess' in our eyes might be disappointing but I think she'll be okay with our current assessment. If not, well, there's always practice for that. MOVE YOUR FEET!!!

Thanks for keeping up with us on this site.

Until next year, I hope.












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Comments

4 Comments

BettyAnn Ralston
By Betty Ann Ralston
Wonderful news!
Continuing to send warm thoughts, high-fives, and prayers From Ellie's Aunt (Emily's roomie one time in Manhattan), ~Betty Ann
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1 person hearted this
Kayla Dickhoff
By Kayla Dickhoff
Awesome news!!! It never gets old! Thanks for posting!!!
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1 person hearted this
Maribeth Cato
By Maribeth Cato
Oh what a beautiful miracle! Emily has worked very hard! Much love and joy, Maribeth
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2 people hearted this
David Edwards
By David Edwards
Great to hear good news from a great family. Enjoy the coming summer.
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1 person hearted this