Thursday, June 4, 2009


Lots of grads-EMU Convocation Center
The grad
So she is done-Ms. Naomi- with Ann Arbor Public Schools and so am I. It has been almost 25 years since Shanna entered kindergarten in 1984. Naomi entered kindergarten just as Shanna started her senior year. It hasn't been an easy time as Naomi has a significant learning disability that didn't rear its head until she was in 2nd grade. As a pre-schooler she hit all those milestones on time or early. She was fairly articulate, read fluently, drew and wrote very well for her age. Great fine motor skills and exceptional gross motor skills- a good athlete at an early age. She seemed much more advanced than Josh at the same age (and he is a very bright, successful adult-honor student in engineering) so I assumed I had nothing to worry about except for her unusual crabbiness. But even as she was able to read out-loud much more fluently than many of her classmates, she could not recall, if asked, what she just read. She was fascinated with numbers-she memorized long lists of phone numbers and addresses though not with the street names and could memorize a long list of spelling words quickly. She could not tell you what any of the words meant however. By 4th grade, she was falling way behind and I wanted intervention. It was very difficult getting an IEP for her as her disability seemed so unusual. Plus they were defining a disability as a huge difference between ability and performance and they were arguing she had no ability i.e. she was mentally handicapped. But she had pockets of ability-fairly high math skills so they couldn't really say that. Indeed, we had her in the higher math track in high school for a while and the personnel who were assigned to help her had less ability than her-presumably college graduates. For lack of a better classification-they said she had language processing disorder-both written and oral. She could not make inferences. She understands only literal language. A sample from an elementary school story problem:
Ms. Smith's class has 25 students. Fifteen of them are boys. How many pupils are girls?
Most 4th graders could handle this even if they didn't know that 'pupils' are another name for students-they could infer that. Naomi couldn't. She was confused and thought pupils had something to do with eyes and didn't know how that could fit in. Also if there was a piece of unnecessary information like 'Room 204 has 25 students ', she would somehow work the number 204 into the equation.
As time went on, the gap between her performance and her classmates became larger. As they kept repeating last night, Huron is ranked the number one academic high school in the state. I assume this is based on standardized tests, number of AP classes and the performances on the AP tests, etc. This makes the gap seem even larger. I have since noticed that her ACT score is about average if you compare it with other high schools' (other than Ann Arbor's) averages. They are fairly good at dealing with high ability students-plenty of them coming from very educated households-of course these kids teach themselves, but to deal with Naomi is another story. At best, she was given extra time on tests and I was able to intervene when teachers' instructions were not crystal clear-a big problem as Naomi misinterprets what seems obvious to everyone else. I also could pull her out of a class that proved unsuitable for her. I am trying to expand her limited vocabulary. She asks me constantly what does this and that mean. She is now reading for pleasure and has come a long way but there still is much more work to be done.
Shanna and her family drove 14 hours to be at the ceremony. As she is 26 weeks pregnant, she needed to stop to walk and Oliver gets very antsy confined to a carseat for so long. It was fun seeing him again.
After the very long ceremony, we all- Josh and Julia, Shanna, Oliver, Ramy, Steve, Naomi and I, went out to eat. Naomi was to go to the school's post-graduation party but got lost trying to find it (like everyone except myself in the family, she is directionally impaired) and decided to stay with a friend instead-hopefully the friend she said she was going to be with-we are having some trust issues now.
Back in CancerWorld, the ASCO meeting is going on in Orlando where all the latest cancer news is being presented. I haven't finished poring over the many abstracts with nuggets of info about TNBC (see
The biggest news that made its way into the mainstream news was the effectiveness of the PARP inhibitors against metastatic TNBC. In one case, they caused a cure. But I was trying by reading over the numerous abstracts to answer a few questions I have about this awful disease. They all start with that scary introduction, you know the one, with words like 'deadly' 'very poor prognoses' 'no targeted treatment'. I just have to plow past those heart stopping words and get to the messages, which are very mixed. Some examples:
1. No differences in survival in TNBC for chemo vs no chemo for Stage I patients. (with all their farting around, I went from Stage 1 to Stage 2. Thanks for that)
2. Where do mets first occur for TNBC? Lungs: 36% Liver 11% Brain: 11% Bone: 19% Skin 9.7%
Scariest of course, is the brain
3. Median time to distal (vs local) recurrences: 2.6 years Median time to death 4.2 years. All of this I assume is from the time of first diagnoses.
4. Asian TNBC patients have a more benign course of the disease than patients of other ethnicities-especially African Americans.
5. Numerous tumor markers predictive of prognosis-I've must have seen at least 25 different ones. The one that stands out are the Kis-the proliferative index. If this is high, bad news.
6.The tumor marker CAx (forgot the number) that rises with metastatic estrogen driven BC, does not rise at all with TNBC nor is elevated in the early stages. So much for trying to track the disease.
7. One research group developed a nonogram for predicting negative outcomes. Increased age of patient led to 'better' outcomes. Good for me.
This wasn't in the TNBC abstracts but on TV, they showed how one group at Mass General takes the patients tumor and studies its genetic background and tumor markers before deciding on treatment. They showed a 48 old lung cancer patient (non-smoker-they always like to include that info for some reason like you don't deserve any compassion if you smoked and got lung cancer) whose tumor was filling up her lungs quickly. They discovered some defect in its DNA similar to a skin cancer defect and gave her the chemo suitable for skin cancer. Tumor went away and the patient is thriving.
Lots of stuff that I don't have enough time to suss out. I need to be dealing with the graduation party and some other stuff instead.

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