My 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.


dana jones posted a new journal entry, "Year 6 (or is it 7?)".

I'm sitting in the living room on a beautiful Tuesday morning. Emily and Samantha are at school, Dana is at work, and Katie is playing on the couch next to me while ... Read more

dana jones added a new photo.

dana jones posted a new journal entry.

There's a song by John Denver that I have always loved and thought of often during Emily's treatment for Wilms' tumors. The song is "The Eagle and the Hawk". ... Read more

dana jones posted a new journal entry.

April 1, 2013: Emy's last major scan day Echocardiogram, blood draw, urinalysis, physical, mole check, health education session, second physical, more teaching by ... Read more

dana jones posted a new journal entry.

Warrior. Brave. Hero. Emily is all that. Young. Scared. Nervous. Yup..she's that too. There are times that I don't see Emy as a nine year old. She's always been an old ... Read more

dana jones posted a new journal entry.

I woke up at 3 AM today to the sounds of our 11 month old crying and my stomach digesting half of a Big Mac. As I laid in bed with all that noise, my mind started ... Read more

dana jones posted a new journal entry.

I just told Emily the results of her renal sonogram this morning.Me:  "It said that your cysts were too small to see."Emy:  "No cancer! Right?"Me:  ... Read more

dana jones posted a new journal entry.

After a day spent at Children's Medical Center in Plano, Emily is sleeping on the blue couch while I'm sitting at the computer trying to think of a clever way to tell you ... Read more

dana jones posted a new journal entry.

This past weekend at a birthday party, a friend we've made through the cancer experience asked me if I had updated Emy's CaringBridge lately. After thinking about her ... Read more

dana jones posted a new journal entry.

Emily is a big sister again!Katherine Eileen Jones (Katie) was born this morning at 8:20 AM and weighed 8 lbs 4 oz. She's 19 inches long and has long fingers and toes! ... Read more

dana jones posted a new journal entry.

The kids are in school, Dana is out of the house, and all I can hear are the sounds of raindrops hitting the windows. I'm pretty content with how this day is going and ... Read more

Show more recent activity