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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

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 singing a song mostly of her own creation that occasionally has a word in English I can recognize. It's three parts entertaining and one part confusing. Oh well, at least she isn't taking a sharpie to the furniture this time.

Emily had her yearly appointment with the ACE folks at Children's Hospital yesterday. Though we seem to go through oncologists quicker than tic tacs, yesterday's "doc du jour" might be a keeper. Some are great with kids but not parents and others can be just the opposite. This guy seemed good for all of us so now we have to hope that we see him next April at the annual exam.

News wise it's all good!. Emily is very healthy, growing normally, and showing no signs of latent effects from chemotherapy or radiation. The ACE staff reminded Emily of what she was diagnosed with and how she is to treat her body going forward. Keeping to a healthy and limited sodium diet, as well as staying well hydrated is important for her since she has less overall kidney mass than most kids her age. There are no limitations to her physical activity but she was told that tackle football wasn't going to be a part of her future even if she really wanted it. Considering she's a dancer, nothing was lost there. Overall, the appointment was helpful, informative, and (thank God) routine. If I could have eliminated Emy's white coat hypertension and growing anxiety that manifested in unexpected vomiting, this trip would have scored an "A". Still searching for a perfect score after all these years! How many has it been anyway? I'm losing track.

As I finish writing this, Katie has come down from her Idina Menzel high (yes, the shrimp has seen Frozen a few times) and I'm getting all indications that she's due for a potty training session. I think she instinctively knows when I'm just about to finish something up and being the true boss that she is, has to remind me that I'm on HER clock no matter what. I'm a father to three beautiful, strong, and healthy young ladies. When they tell me to "Let it Go", I'd be an idiot if I did anything else.

Until next year!












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Comments

5 Comments

Wendy Piltz
By
LOVE great ACE reports! Don't expect anything else. 'Warm hugs' to everyone! Hope to see you very soon!
Love, The Piltz Family
Jackie Burlingame
By
Can't believe ALL this has happened, seemingly in the blink of an eye. From "it's cancer" to "sharpie on the couch" is indeed a miracle! Love to ALL our Jones peeps, special hugs to Emily. Love y'all to pieces! Xoxo
Eileen Graham
By Ms. Eileen
Beautiful Emily, your growing up so fast. I still think of you and Sammy always and I still hang up my christmas ornament you made me every year. Love you lots.
Constance Wolfe
By Constance Wolfe
How great to hear the good news about you, Emily! Take some time to celebrate too.
Sending you lots of hugs.