Latest results

Peter's Blood Counts
	White	Red	Hemoglobin	Platelets
High normal	13.0	5.1	16.0	450
Low normal	4.5	4.1	12.0	150
22-Oct	4.6	2.7	8.6	30		Baseline
29-Oct	4.1	2.8	8.7	25
3-Nov	4.0	2.7	8.4	30
21-Dec	3.5	3.5	11.2	23
9-Feb	5.3	3.5	11.2	17
		Key:	Down	Up		vs. Baseline
Notes:
9-Feb	5.3	White count elevated due to viral infection

We got the results from yesterday's blood tests by late this morning.  Most of the counts are remarkably stable considering that Peter's bone marrow has less than 5% cellularity.  The elevated white count won't be permanent -- Peter has had a string of mild colds and the latest one has gone on for a while.  The body makes more white cells (as long as it can) when it is challenged by an infection.

Peter's platelets continue to drop as expected.  He is already at risk for a fatal bleed should he hit his head or take a blow to the stomach.  He probably won't start bleeding spontaneously until his platelets go below 10.  The first thing we'd be likely to notice would be little pinpoints of color where a capillary had burst under his skin, and an increase in small bruises all over.  It's hard to see bruises on Peter's skin, so it might not be terribly noticeable.

Peter has been home from school for two days now, and he will be staying home again tomorrow.  His body just can't seem to get over that cold, even though he only has a little bit of nasal and chest congestion.  He hasn't had a fever, but he's been sleeping about 14 hours a day, and his appetite has been really low.  He doesn't have his normal sparkle.  He's very quiet.  He has chest pain off and on.

This is the time of the year when all of us start saying, "Oh, I can't WAIT until SPICE!"  (That's SPICE Indian Heritage Camp, where we go each summer to spend time with our best friends in the world.  Peter has been going since he was 9 months old.  This will be our family's 22nd consecutive year in attendance.  Now, with Peter's weight loss and changed demeanor, it's impossible for me to say to myself, "Well, of COURSE he'll make it to SPICE!"  I was concerned about that right after he was diagnosed, but then he had his lengthy honeymoon period, a time without any symptoms.  Now I'm thinking about it again.

SPICE is always ecstasy and agony for me.  It is so wonderful spending a few days with my very dearest friends and seeing the kids so incredibly happy with theirs.  But then there are the goodbyes.  During my first 15 years at SPICE, I sobbed all the way home.  SPICE is family, and it's so hard to say goodbye to people you love, knowing that you won't see them again for a whole year.  Especially when you never really get enough time together.  I've been better during the last few years, because we have our SPICE listserv now, and many of us are on Facebook together.  But it's still hard.

Contemplating this year's SPICE is really painful.  Peter will go if he is at all capable of traveling.  I am planning to contact "Make a Wish" to ask if they will fly us to Johnstown, PA so that he doesn't have to weather the long car ride.  Even if he is too weak to walk, he can travel in a wheelchair.  But then I think about seeing Peter seeing his SPICE friends for the very last time.  They will all want to spend time with him, and I know that emotions will be very strong.  Eventually the last day will come, and the goodbyes will be final ones for him, even if he doesn't really understand that.  Everyone else will.  Leo and Annie and I will know that the next time we come to SPICE, he will be missing.  The first SPICE "after" Peter will be pretty agonizing.

There is, of course, some chance that Peter won't make it until late June, and that SPICE 2010 will have been his last.  My own gut and some input from others suggests that there is a 25-50% chance that we will lose him before SPICE.  Then the first SPICE "after" will be this year.

I've already decided that I want to do Peter's main memorial service at SPICE.  I don't want to make it too long or lugubrious.  I just want to gather everybody in Heritage Hall to do something together to remember Peter.  Everyone will want and need to do that, especially the kids who have grown up with ours.  I'm not spending a lot of time thinking about what that will be, but it's something that will have to be thought about.

In the event that Peter is just too sick to travel in June, I'm planning to send Leo and Annie to SPICE with a laptop and webcam so that anybody who wants to can Skype Peter to say a few words.  God bless Skype.

It's a really good thing that I'm spending all waking hours training to be a paralegal and doing a paralegal internship.  I may have to put it all on hold and resume in the fall, but right now, it's all a wonderful distraction.  Torts!  Contracts!  Case law!  Getting up early every morning to commute downtown! 

My greatest wish is to be an immigration paralegal, if I'm lucky enough to have any say in the matter. To increase the odds, I decided to look for an internship with an immigration law firm.  None of the internships offered by Roosevelt University were suitable, so I googled "Princeton University attorney Chicago immigration" and found a young woman from the class of '02 who is practicing with an immigration law firm right here in Skokie!  She kindly passed my resume to the head of the firm.  This Monday I interviewed there, and Tuesday I was invited to begin an internship next Monday.  I have class from 9-12:45 every day of the week, and I'll be working at my internship 3 afternoons a week.  I'm glad to be close enough to get home quickly if I need to.

This afternoon I made up my mind that I really had to call hospice and get the ball rolling there.  Unfortunately, none of the hospice organizations in our area work with patients under 18.  They advised me to contact Children's Hospital downtown and Lutheran General Children's Hospital a few miles to the west.  That's where Peter had his bone marrow biopsy.  I am hoping that either or both will have palliative end-of-life care programs.  Leo and Annie and I are really ready for some counseling, and I have to talk through the various things that could happen and what our strategies will be so that we don't have to make hard decisions without any preparation.

After making the first round of calls, I ran out of oomph and decided to do more of my voluminous homework.  There's always tomorrow.