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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.
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". Though I don't have the music to play for you, here are the lyrics: I am the eagle, I live in high country In rocky cathedrals that reach to the sky I am the hawk and there's blood on my feathers But time is still turning they soon will be dry And all of those who see me, all who believe in me Share in the freedom I feel when I fly
Come dance with the west wind and touch on the mountain tops Sail over the canyons and up to the stars And reach for the heavens and hope for the future And all that we can be and not what we are
I see Emily as the hawk, overcoming a temporary condition which curbs her flight. "We" are all the caregivers, friends, family, and well wishers who hope she has a wonderful and healthy future. The eagle? That's left to your own interpretation. I see it as one particular angel in heaven who watched over Emily during the surgeries; not yet ready to let her join him high up in the clouds.
The last line of the song "And all that we can be and not what we are" is hope that she see herself, as others will too, as not a girl who had cancer but rather as a young lady who knows that her future is as open and unwritten as anyone else's. I swell with emotions when listening to the song and can't help but think of our beautiful Emily. Allowing ourselves to immediately think about her in terms of what she can become rather than what she went through has not been easy. Hope is a freedom when unencumbered. It's a difficult choice when not.
It's amazing to us that today marks 5 years and three weeks since Emily had her last chemotherapy infusion; otherwise known as her official "start" to the after the cancer experience. From this point forward, Emily will have an annual physical and an echocardiogram every two years. That's it. No more scans to note unless there's a reason to check more closely. She's officially done with cancer.
God willing, it's now time for Emily to "sail over canyons and up to the stars, and reach for the heavens and hope for the future." After all that she's been through, it's finally time to move on; to enjoy today and dream about tomorrow.
To quote John Denver one last time: "And all of those who see me, all who believe in me, share in the freedom I feel when I fly".
Thanks for singing along with Emy. Now let's watch her soar!