Updated: September 18, 2008

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. She will need special education assistance, many reconstructive facial surgeries as her face continues to grow irradically due to cranial/facial radiation, and it appears that her pituitary gland is not functional properly - she has a condition called panhypopituitarism.

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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 2008 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" 7th 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 am now quite worried that she is not keeping up with her peers. 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.

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The name "Delaney Renée" means

"The Challenger Reborn"


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Journal

Thursday, September 18, 2008

Here we are ... mid-term in the school year and all are happy and healthy (Praise God!)

Joshua is happily ensconced in the fifth grade – but a bit overwhelmed by the multiple teachers and homework to organize… he has joined the choir and met several new friends both at school and in his YMCA after-school program. He also just started fifth grade religious education classes at the church and has expressed an interest in becoming an alter boy.

Emilie is a new Freshman an a joiner it turns out… she is now on the Student Council, a member of the Film and Spanish Club, and is interviewing sometime this week to be a “Best Buddy.” This last club takes a junior and senior classman and pairs them up with a special needs student as a friend, mentor and companion for special club events designed to introduce their “Buddy” to the school’s social possibilities.

She is also helping me to teach a third grade Catechism class at our church and has volunteered to accompany Delaney to her religious education activities and events in the Junior High program. Amazing to watch her take all of this on and still be able to organize her time and grades to ensure she stays on top of things at school!

Delaney is doing relatively well – her grades are good, mostly A’s and B’s – only one C! She is working hard but the stress of being in school full time is really quite difficult as she gets older. It is hard for her to focus for long periods on time and the decrease in her processing speed makes classes like math and science a bit more tedious than most.

She has been working hard with her new parapro – Katy – to assimilate into the Junior High School community, but it is not an easy transition for someone at Delaney’s maturity level. The school has been very forthcoming about their interest in seeing her succeed and I have high hopes for her success this year. More than anything, it is her inability to control her moods and emotions secondary to the radiation that I worry about and that seems to cause her the most trouble. Her biggest hurdle at this time is overcoming the urge to run away from situations – literally – when she feels stressed or upset. This has become an issue at both the JHS as well as her YMCA latchkey program, where there are simply not enough adults available to run after her and provide the requisite supervision for those children left in the room.

If anyone has read any great books or has ideas about coping skills and how to teach children with executive dysfunction how to make better choices – I would love the reference!

As for me, I’m crazy busy at work on a very interesting but time-consuming project. I also joined the church choir recently and am enjoying having just a little bit of “Mom” time for me. I also received word that my marriage to the children’s father was officially “Annulled” in the Catholic Church. The verbiage was interesting: “…your attempted marriage” has been nullified. It makes it sound like I was trying to get away with something!

Still, it was good to finally have closure to that part of my life and while I am definitely not looking to “seek out another contract of marriage in accordance with the Laws and Cannons of the Catholic Church” I just may join the singles group and try to integrate better into our new home here in Indiana and meet some other adults. For some reason, I did not feel like it was right to do that when I was divorced, but with an annulment I feel as though I somehow have a new start in my personal life.

Thanks so much for keeping up with us… it’s a busy life with my teen and pre-teens, but I will continue to post when I am able!

Peace!

Renée
Mom to the Three Little Diggs

Updated: September 18, 2008

Read Journal History

Hospital Information:

Patient Room: Fabulous follow up care!!!

Peyton Manning Children's Hospital
2001 West 86th Street
Indianapolis, Indiana 46260
(317) 338-2345

Links:

E-mail Author: TeamDelaney@comcast.net