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
Saturday, August 23, 2008
The kids have been in school for two weeks now... Joshua and Emilie are easily assimilating into the 5th and 9th grade. It is so weird to have a high school-aged child! When did that happen!?
She spent the summer reading "Great Expectations" and volunteering at the Junior High School for a few weeks before school started. I am so proud to hear from the secretaries that they could not have gotten ready for the school year without her... she is growing so fast and such a big help to me too!
She is thinking now of running for office or for student council at her new high school. She wants to join film club and Spanish club... I think it's all great. I want her to try new things - see what she likes and doesn't care for - it will help her to grow as a person.
Joshua is excited to be in the intermediate school with only fifth and sixth graders. I think the pace is a bit faster than what he's used to but so far he seems to really enjoy it. He's going to join the choir and cross country team so that will be fun to watch him start to join in with other kids his age doing things he likes.
Delaney has had a more difficult transition. Going from the intermediate school to the junior high has been a difficult transition for her. She is fatigued - as she always seems to be at the start of the school year - and it is hard for her to get used to being at school for a full day.
That being said, the teachers and staff are learning about her as well, so it is difficult for them to know when she is using fatigue as a coping mechanism, an attempt to avoid work that is difficult or "boring" to her, or if she really is tired.
I'm in a quandary too - I am learning about her at much the same pace as she grows and experiences new situations - I cannot definitively say - even as her mother - where the actual difficulties end and the manipulation/coping begins.
The impulse control issues are causing problems for Delaney and for her teachers who do not take kindly to her abruptly running out of the classroom in anger or distress. This is new to them and I am not sure how we will mitigate it. She needs to be in school - she is smart enough if not mature enough - but it seems quite overwhelming for her to go at the junior high pace for a full day. I am going to be speaking with the school about the possibility of her spending three years at this two-year level rather than just two. That will give her the opportunity for two resource periods which may make her day easier to tolerate. We shall see.
Please pray with me as she goes into her third week - I can only hope that somehow she becomes more accepting of the level of work she is expected to accomplish and more open to the idea of learning things that have no interest for her.
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