Happy New Year

As New Year's was approaching, I was being pessimistic.  I would rather like to call it realistic, but in reality, it was just plain pessimistic.  Typically I'm not that pessimistic of a person.  However with my MIL and her health problems, Obsidian and his continuing medical mystery/issues, and Pyrope starting kindergarten, the situation of Jet's job, and the major changes happening at my job in the first quarter of this year, I just was not thinking this would be a "happy" year in an easy sense.

And so far, it has been best skipped.

My MIL decided she is going to do chemo.  Which is relatively good.  However, her expectation of it is not that realistic.  She does not think she is going to feel bad after each round, and plans on just stopping if she gets sick.  She does not think she wants a ride from strangers, so Jet will possibly going to take her to chemo, sit with her, take her home, make sure her apartment is stocked, then drive back home.  And repeat every 3 weeks for 6 rounds... if she makes it through all 6 rounds.  Jet and I were talking about the "what ifs" including prognosis if she chooses not to have further treatment.  He thinks that she will be around for another 2-3 years "at least".  From my Goog.le knowledge, I'm thinking it is significantly less.  A lot less.  Since this is not a doctor's prognosis, and even that could be wrong, I just am not getting a good feeling about it.  MIL just didn't not look good when we saw her.  I am dreading if Jet and his family are blindsided.

The endocrinology appointment for Obsidian was interesting.  I'm not going to go into the things that ticked me off about the doctor, as it really is not an issue that is close enough to the top of my "to think about" list.  Bottom line being, we have agreed to a MRI of his head.  Since he is so small, and has the history of cardiac issues, it is going to have additional hoops than an MRI of the head normally is.  The fact that they are looking for a pituitary tumor, or one pressing against it, hydrocephalus, evidence of mitochondrial disease, makes me uneasy.  I would love an answer to Obsidian's medical issues... but I know I will potentially have issues accepting a diagnosis.  I don't even know if that sentence made the least amount of sense.

Trying to get things ready for the MRI has been a bit of a challenge.  Making sure insurance is going to approve it.  Trying to make sure that everything his neurologist and geneticist also want looked at are looked at.  Finding someone to watch Pyrope while we are with Obsidian.  All of the logistics of it.

If the doctors still think Obsidian needs growth hormone replacement therapy (which is the current thought), we have to find out if our insurance (a) covers it then (b) if they will require a growth hormone stimulation test prior to approval.  This does not sound fun.  Very unfun actually.  This would be the 3rd time in a period of a month that I will have to have Obsidian fasting (he has to do some bloodwork prior to the MRI that requires fasting, then to be drawn at a specific lab that is an hour from our house at that time of day, then the day of the MRI he will have to be fasting until it is done because they will have to put him under general anesthesia to do it).  Obsidian doesn't do fasting well.  If he does have to do the growth hormone stimulation test, I'm considering buying this as a distraction/reward/bribe for him.  We have the Toy Story Imaginext Junkyard playset and the two of them play with it daily (and they got it for their birthdays last summer, and I think they have still played with it daily).  Lately they have been getting into "superheros", so I think they would love it.  And I would be willing to spend that amount of money to keep him at least somewhat entertained during the 3 hours it will take to complete the test.  I would really rather not have to go through that test.  I would rather try growth hormone replacement and see if it helps (as there are even some biochemical indicators that is a problem).

My brother and his wife had been in Maui for 2 weeks.  On the plane ride home, my brother got sick.  He got home and went to the doctor.  He was directly admitted to the hospital because he had diverticulitis and an infection.  He is hoping to get released today.  My mom is not the most stable person mentally.  And this has thrown her for a loop.  And it is not fun dealing with her.  At all.  I dislike family drama, and there has been more than enough.

So if the first 15 days of 2011 is any indication of how it is going to go, I want to hibernate until 2012.

I've been doing battle this past week with our insurance coverage.  Jet and I are considering suing over some of the issues.  It is a long story, and I don't want to get into it as it just makes my blood pressure sky rocket.

No "right" answer

In college I had one professor in particular that had multiple choice tests that were "choose the best answer" not choose the "right" answer.  I hated those questions.  I would rather have an in class essay, a take home essay, a project, a presentation, a practical, a term paper, anything except the "best" answer, as there would be at least two answers that were correct, but I had to divine which would be best in my professor's opinion.  Unless it was obvious (which most of the time it wasn't), I would write the pro's and con's for each answer.  I would think of how I would weight each pro and con.  Then I would try to think how my professor would weight each pro and con from what she had said in lectures and through my general knowledge of her and how she thought.  It was maddening.  There was little recourse if I picked a correct but not "best" answer.  I was a rare person because I occasionally would win credit or partial credit for my "best" answer because of my pro/con list and weight marks I would make in the margin of my test.  My test books were a mess by the time I was done if you were wondering.

I've found those tests, while annoying, taught me about life (and I guess the subjects they were supposed to, but to be honest, I can't even remember the specific classes that professor taught).  Or maybe more specifically, they taught me how to critically think about a series of possible answers.  My pro/con lists, with notations of which pros and cons were more important than the others.

Obsidian had an appointment this week with his genetics doctor.  His weight has stayed on his curve for weight gain.  According to the measurements, he lost 1cm of height.  We are going with the assumption that he didn't shrink.  When Dr. N and I last talked, there was significantly less information on Obsidian's chromosomal deletion than there is now.  He had a fair size file of the articles that have been written regarding del 15q11.2, including some that are yet to be officially published.  6 months ago, his deletion was not linked to small stature or gross motor delays.  Now, there has been some other cases that there was small stature and/or gross motor delays.  The strongest links are still to more behavior, cognitive, and seizures problems.  There are completely "normal" people that have also been found to have the deletion.  Current thinking on the deletion (to the best of my understanding) is that it leads to a genetic predisposition of a number of problems.  Obsidian either inherited the deletion from Jet or I or it is a de novo deletion.  The researchers are now thinking when it is inherited, the children have similar issues to what the carrier parent has.  So in Obsidian's case, since Jet nor I have any of the signs/diseases associated with it, the working assumption would be that Obsidian would not be at that much more risk for the problems that show up later than the general population.  6 months ago, Dr. N did not see any benefit for having Jet and I to have a chromosomal study done (unless we wanted it for family planning purposes, which we don't).  So Jet and I were happy to not open that can of worms.  However, now, he is recommending we at least consider it if our insurance covers it (which is a whole different issue for a different rant).  If it was just looking for the 15q11.2 deletion it would be one thing (and we could request no other information be given to us).  But we could find out something could indicate future health issues for one of us.  And what real, tangible is not the correct word, benefit would it be to Obsidian?  Yes, he has the deletion.  Yes, we are aware of the problems that might show up in the future.  But no one can predict if they will be problems for him.  He has not had any of the most common issues (being seizure disorder, mental retardation, and delayed speech).  We might not be as concerned, but it will always be there (at least until he is in his late 20's-early 30's as most of the time it shows up before that point).  There is always the chance he would/will develop them even without the deletion (however, he wouldn't be Obsidian if it weren't for the deletion because it is part of him).

So Jet and I need to decided, unanimously on a question (to be tested or not), that does not have any real "right" answer.  Just a "best" answer.  A best at the current time.  A best for the future (as seen from now).   At this point, I'm leaning towards no.  We will wait and see more.  We can always choose yes in the future, but we can't change our mind back to no...

Yes to chemo

After much thought on my MIL's part, she has decided to at least try chemo for her ovarian cancer.  If things go as planned, she will be starting next week.  If things go as hoped, there will be 6 rounds of chemo followed by hormone therapy.  I hope things go well.  For her sake.  For Jet's sake.  For my sister-in-law and her family.  Our kids don't really know her, and only see her once a year, so it won't impact them as much.

Jet and I didn't wish each other "Happy New Year's" this year as it would have just felt hollow and sarcastic.  MIL cancer and its treatment being one major reason.  Once again this year we are not planning any family vacations so he can spend his vacation time caring for her if needed.  She lives alone and my SIL is... unable/unwilling to help.  So the plan is Jet will go up and care for her in the days she needs him after each treatment.  I don't begrudge my MIL time with Jet.  And I don't begrudge Jet time with his mother, but it does make it hard on me.  Particularly when I see my SIL living less than 10 miles away and unable to help because she doesn't have the time, but she has the time to go on week long vacations, weekend getaways, and out of town dance competitions with her girls.   For the 2nd year running, our "vacation" throughout the year is periodically having to be a single parent and keeping the house going on my own.  At times I feel guilty about this, at others I feel justified, and others just frustrated by the whole situation.

I just hope this buys my MIL time on the good outcome sides of the statistics.  50% survival rate at 2 years, 40% at 5 years (although it might have changed because those are for people who start chemo within a couple weeks of surgery, and my MIL will be close to 3 months as it took that long to decide). 

Thankful Thursday

In no particular order:

• My front loading washing machine
• The "sanitize" option on my dish washer
• The flu shot (while we all got sick, very consistently the people who did not get it were much much more sick and it lasted a long time)
• Specific people in my life and my children's lives that have the knack of saying and doing just the right thing at just the right time
• Having an occupation that lets me have a wide variety of options, that I can fairly easily execute if I choose that path
• PBS kids shows, and BBC kids shows on Net.flix
• Heavy comforters, I just love curling up under them during the colder month

Wordless Wednesday

Thankful Thursday

• That we live so close to so many world class health care options.
• Good Earth tea.  Yum.
• Good books.
• MP3's, you can bring a whole bunch of music with you anywhere.
• The ability to connect to others I wouldn't otherwise be able to by the internet.
• Unseasonably warm weather
• Floor space in my living room again.

Wordless Wednesday