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Updated: July 2, 2010
New diagnosis: MPNST - please see www.caringbridge.org/visit/teamdelaney 
Delaney Renée Diggs
Welcome to "TEAM DELANEY!"
(a.k.a. Home of Renée & "The Three Little Diggs'!")
About Our Team Leader: Delaney was diagnosed on 06/26/02 with localized Ewing's Sarcoma/PNET at the age of six, though her symptoms began as early as January of 2001 when she was still only four years old.
The tumor started in her left maxillary sinus, and an unfortunate CT scan reading referred to it as "congestion." This occurred 18 months prior to her date of diagnosis, and during that period she was frequently experiencing flu-like symptoms, was easily fatigued, and began to display signs of depression, though the psychologist we took her to see insisted it was a low-grade dysthymia. The many months of lost treatment time allowed the tumor to spread further into her maxillary sinus, destroying the ethmoid bone and invading those sinus passages as well. Continued growth resulted in the beginnings of erosion to the cribriform plate until the 6cm X 7cm X 7 cm began to distort the facial features around her eyes. At that point, wrapped entirety around optic chasm, surgery so near the central nervous system and optic chasm was out of the question as the morbidity rate was simply too high due to the involvement of the central nervous system and her eyes.
Delaney was treated on the then-standard 14-treatment protocol for ESFT/pPNET, she had no metastases but was hospitalized for 7 five-day chemo treatments, 5 three-day chemo, and two overnights. There were also many, many times that she was an inpatient due to low ANC, major infections such as shingles to the skull, aspergillus in the sinuses, and sepsis.
She received 28 days of radiation to the face and frontal lobe, 21 directly through eyes for a total of approximately 5000 cGy, which probably saved her life at the time. Sadly, the late effects continue to cause insurmountable damage to both the structure of the area as well as to the frontal lobe region of her brain. Radiation also caused her pituitary gland to not functional properly - she has a condition called panhypopituitarism and takes synthetic hormones to correct the deficiency.
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The continuing radiation damage to the frontal lobe has been measured and reported through the use of multi-stage neuro-psychological testing and we recently finished the testing for Spring 2009 and have learned that she continues to face decreased function in the areas of processing speed and impulse control. She remains very intelligent, but it takes her longer to do things than it used to. It's difficult, because two years ago her IQ tested at 135, and this year it is 106. The school tells me this is average, but Delaney has always been exceptional, and it is important to me that they understand all she has lost in their efforts to work with her and continue building a working IEP that will challenge her while allowing her to succeed without setting her up for failure. The Hamilton Southeastern Schools have been working in good faith with us to accomplish this goal and I am hopeful for the coming year. It will help to continue tracking her progression throughout her formative education. For her, this means remaining a "normal" 8th grader in the general education classrooms with a para-professional to assist her day-to-day and alternative learning methods as her needs become apparent. For the first I am concerned at the very marked difference in maturity between Delaney and her classmates at the junior high and though in the past I was constantly amazed at the strength of will and determination she has shown in the face of all she is challenged by. I can only pray that she will continue to grow into herself - to be as we pray nightly - nothing less than "the very best that she can be" in her educational goals, her relationships and her faith.
This section explains the challenges of a child who suffers a tumor or Traumatic Brain Injury to frontal lobe:>Frontal Lobe Tumors/TBI (Traumatic Brain Injury)
•Inability to plan a sequence of complex movements needed to complete multi-stepped tasks, such as making coffee (Sequencing).
•Loss of spontaneity in interacting with others.
•Loss of flexibility in thinking.
•Persistence of a single thought (Perseveration).
•Inability to focus on task (Attending).
•Mood changes (Emotionally Labile).
•Changes in social behavior.
•Changes in personality.
•Difficulty with problem solving.
•Inability to express language (Broca's Aphasia).
Parents of children with a history of frontal lobe tumor or injury need realistic information about their child's cognitive defects and preserved abilities to avoid false optimism leading to frustrating and exhaustive educational plans. Because of the possibility for delayed vulnerability of executive and information processing skills, low tolerance and emotional instability, reassessment of the disability in adulthood is needed.
In many cases children suffering from these TBI can exhibit normal or above average IQ following injury, but can still have profound problems. These children were still unable to organize their lives and make sensible daily decisions. They showed severe problems with the organizational skills of everyday activities despite relatively normal testing results and language and intelligence (Shallice T. 1991).
Unfortunately, the effect of brain injury are to exaggerate pre-tumor/accident personality traits and disabilities. As noted in the study entitled "Rehabilitation of Brain Injured Children": (Vannier A., Brugel D.G., DeAgostini M. 1999)
Although it is not possible to determine their frequency precisely, these personality changes seem to be common in clinical practice and are likely to be missed by standard measurements. They may include, attention deficit and fatigue, impaired planning and problem solving, lack of initiative, inflexibility, impulsiveness, irritability and temper tantrums, opposition, and socially inappropriate behavior.
One of the common symptoms of traumatic brain injury is that of disinhibition. A person suffering from TBI disinhibition is likely to "speak his mind" and say socially inappropriate things where a normal person might think them but have the sense not to say them. This causes increased difficulty in socialization and advancement as an adult.
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The name "Delaney Renée" means
"The Challenger Reborn"
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Journal
Wednesday, April 22, 2009 8:45 PM EST Extraordinary Healer Award Winner Announced!
Congratulations to Christine Wilson, RN, of Nationwide Children’s Hospital in Columbus, OH, who was awarded CURE's 2009 Extraordinary Healer Award for Oncology Nursing at a ceremony in San Antonio on April 30th before more than 600 of her nurse peers.
As the winner, Wilson received a three-night “Spa Journey for Two” at Mii Amo Spa in beautiful Sedona, Arizona. Also present was Wilson’s former patient, Delaney Diggs and her mother Reneé La Forest, of Noblesville, Indiana who nominated Wilson for the award. Read their winning essay as well as a Q&A with Wilson in Readers' Forum in the Summer 2009 issue of CURE.
CURE also congratulates our two nurse finalists as well as the readers who nominated them!
FINALISTS:
Nadeen Robinson, RN, BSN, OCN
New York Presbyterian, the University Hospital of Columbia and Cornell
New York, New York
NOMINATED BY: Toby Bressler, of Brooklyn, New York
Marianne Sacks, RN, CCM
Aetna Patient Management
Blue Bell, Pennsylvania
NOMINATED BY: Dianne Ericson, of Concord, North Carolina
For the third year, CURE presented readers with a unique opportunity to honor an oncology nurse who helped them heal. This year’s Extraordinary Healer Award for Oncology Nursing resulted in an outpouring of nominations from patients, survivors, caregivers, and peers, describing the compassion, expertise, and helpfulness received from a special nurse on their oncology team.
The event was held during the Oncology Nursing Society’s 34th Annual Congress in San Antonio on April 30th, with Honorary Mistress of Ceremonies Peggy Fleming, Olympic gold medalist and breast cancer survivor.
Thank you again to everyone who participated in CURE’s 2009 Extraordinary Healer Award competition!
Check back on June 17th to read all of the finalist essays and see a full listing of nominees, pictures from this year’s event and more!
http://www.curetoday.com/index.cfm/fuseaction/cureEvent.HealerOverview/id/43
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In case anyone is interested, here’s the essay…
A Life Beyond the Cancer
In the early summer, the month of June, my six year old daughter, Delaney, was diagnosed with Ewing's Sarcoma of the skull. As a newly divorced mom of three young children I was understandably devastated and I remember wondering how I would get through what lie ahead as we made our way to "J5" - the Pediatric Oncology Ward of Nationwide Children's Hospital. In the week it took from biopsy to diagnosis I walked the halls each night, imagining the worst and unable to sleep as my daughter’s condition worsened.
Chrissy was a lovely young nurse who had graduated a few years earlier from the Franciscan University of Steubenville and was assigned to the Heme-Onc unit. When we met her, she was engaged to be married to her college sweetheart, Chad, and had boundless energy and enthusiasm for all around her - patients, colleagues and parents alike. It was very difficult to be down with this young, effervescing nurse around and she made every effort to make sure Delaney was cared for both physically and emotionally.
Times were tough in the beginning. We learned of the diagnosis - a tumor so large it was literally crushing her Delaney's frontal lobe against the top of her scalp. It was Chrissy who held my hand when I learned that it was inoperable, and Chrissy again who held hers through the spinal tab and chemo infusions once we began treatment and yet once more as I learned the painstaking task of cleaning and flushing her broviac catheter to prevent infection.
This young woman remained a consummate professional while bringing a positive spirit of hope and encouragement that allowed me to remain strong for my daughter. At one point in treatment, Delaney had been hospitalized for over a month with a serious infection. My nerves were wearing thin; I was a single mother away from my other children and had not had a good night's sleep in weeks.
It was Chrissy, once again, who came in one evening, pajamas in hand kicking me out of the hospital and home for a night of rest. And oddly, she was the only person in the world I would have trusted to leave my precious daughter with.
Throughout treatment Delaney and I looked forward to the days that Chrissy would be on duty. We would watch the boards each day, hoping for one of the nicer nurses, the upbeat ones that made the difficult world of nausea and pain and chemo and radiation seem to fade to the background when they entered the room with a new joke, fun new pretty scrub shirt, or a simple hug.
I noticed too, how her smile was not just for the young patients. Somehow Chrissy’s positive presence encouraged her colleagues and parent advocates to see past their troubles and focus on the positive that could be found in most days if one looked hard enough to find it.
During the course of Delaney’s treatment, Chrissy’s wedding day neared. It was one day out of the blue as she and my daughter sat discussing it that she got the idea – could Delaney be one of her flower girls? I couldn’t image such a thing! Delaney was tiny, her weight down to 35 pounds, bald and gaunt with huge eyes and dark circles. In a wedding? This would be difficult, of course, Delaney was fatigued and the chemo, now three months in treatment, was making it difficult to function.
But Delaney was adamant and Chrissy was convinced that she could NOT have a wedding without her. With only a week to plan, a dress was picked out, gloves to protect her hands from the Calla Lily she would carry (germs found on flowers can be a problem when your white count is particularly low.) When that August day came Delaney walked down the aisle of St. Joseph’s Cathedral next to two beautiful girls with long hair and suntanned skin… and yet her fatigue seemed forgotten, a rosy blush on her pale skin. She watched the wedding as though it were a fairy tale come to life for her viewing pleasure. At the reception, she flitted around like a little bird, forgetting for one day that she was sick and bald and instead reveling in her pretty dress, the occasion of the day.
When it was over and I tucked her into bed, she told me that she knew that she would get better, because she too, would one day be married in a beautiful church with a handsome man who loved her even if she “never stopped being bald.”
From that day on her demeanor strengthened. She looked forward to Chrissy’s visits as ever and pushed through her treatments, eagerly awaiting time to play, to leave the hospital, in only for the sunshine found on the rooftop playground.
Chrissy embodies all that an Oncology Nurse should be – not because she allowed my daughter to be part of her wedding day, but because she reminded us both that there is life outside of cancer. I will never forget this inspirational young woman. The care that she provided exceeded the bounds of what is required by a health professional.
My daughter, Delaney, talks of her to this day and I believe Chrissy’s footprint on both our hearts will never be forgotten. She reminded us the positive, of what there is to live for amidst all we endured and she instilled a spirit in my daughter that pushed her through treatment – onto the next wonderful thing she could find that would remind her of life outside the hospital. Chrissy reminded us that if we looked inside of ourselves and found our faith, there was indeed a life beyond the cancer.
Renée A. La Forest's Profile
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Hospital Information: Patient Room: Fabulous follow up care!!! Peyton Manning Children's Hospital
2001 West 86th Street
Indianapolis, Indiana 46260
(317) 338-2345
Links: http://www.emedicine.com/ped/topic2589.htm Ewing's Sarcoma Facts
http://www.esbabies.com/?module=esbabies&profileid=40 Photo Gallery: Ewings Sarcoma Patient Survivors!
http://www.acor.org Mailing lists for family, friends and patients fighting cancer and other illnesses
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