Heading home!

We were released from the hospital just after lunchtime today. Carl and I had to practice taking each other's blood sugar readings using our in-home monitor so we wouldn't fumble too much the first time we used it on Peter.

It is going well. The kids are happy to be back together. I am greatly looking forward to sleeping in my own bed! It felt wonderful to dress in my lady lawyer suit and go to my paralegal internship this afternoon. Choir practice tonight was sheer heaven. Belting out Leonard Cohen's "Halleluia" made me feel so glad to be alive.

I'm going to continue going to my internship three times weekly for another week or two. I've already delivered some good work and I want to deliver some more before I tell them that I've left Roosevelt. If they'll allow me to continue my internship, I plan to enroll in one of the top online programs -- from either Duke or Boston University. The ABA doesn't endorse online programs, but work experience (i.e. the internship) is far more important than the endorsement.

I intend to become a good paralegal while poking Peter for blood and sticking needles in his tummy. Having a reason to dress up and go out for 9 hours a week will be just what the doctor ordered to keep me pointing forward.
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Twists and Turns

It's been a real roller coaster since we went to the E.R. on Friday afternoon.  First we end up in the PICU with a diabetic crisis.  Then the PICU doc hears about Peter's blood disorder and thinks we really should be treating it.  It's hard arguing with someone about why you should allow your son to die sooner rather than later.  Especially if that someone is Indian.  So he calls in the hematology specialists, and the guy who did our biopsy isn't available, so his partner comes. 

The partner thinks that Peter's counts have been much too stable for the 5% cellularity that was found during his biopsy in November.  He wonders if maybe the hip that was sampled was "atypical" and that another sample would reveal higher cellularity.  And if that's the case, Peter could have a long time to live without significant symptoms.  He also said that the sample sent out for a chromosome study after the last biopsy "wouldn't grow", so this would be an opportunity to send another one.  Yes, Peter has every indication of having a genetic syndrome, but since the test for Fanconi's Anemia was negative, maybe there is something in Peter's environment that is causing his anemia, and maybe it's something that he could recover from.  I'm very dubious about this, but since we're already here, we might as well go ahead.

So we set up the 2nd biopsy for this morning.  Then our original hematologist comes in (he's the biopsy specialist) and it's obvious he thinks his partner is full of shit.  He is as certain as I am that Peter has a genetic disorder. He says he got a very big marrow sample the last time and feels that the results were very reliable.  In light of this morning's blood counts, he sees no value in a confirmatory biopsy or in sending cells out for a chromosome study.

This morning's blood counts?  We just had a CBC done on Friday, and all of his numbers went up a little. This morning we had another blood-letting around 6 a.m., and by 8 the new CBC results came in.  All of Peter's counts had dropped DRAMATICALLY.  Suddenly, in the blink of an eye, things aren't stable anymore.  Once again, I realize what a good idea it was to start working with hospice. 

As the chart above shows, Peter's platelets are now down to 14.  We've already noticed that his finger-sticks bleed a lot longer than they did a couple of days ago.  A serious spontaneous bleed is possible at any time.  He is more susceptible to infection than ever before.  The hematologist said he just couldn't give me any kind of guess as to how much longer Peter might have.  The two things most likely to happen are an internal bleed (head or gut) or an infection that quickly turns to sepsis.  These are utterly unpredictable.  None of this is new, but it was helpful to go over it again.  My hopes are on a swift end rather than a long, uncomfortable decline, but that's not something I can control.

It's possible that Peter's counts will stabilize again, since the out-of-control diabetes has to have compromised his bone marrow to some degree.  We see no reason to subject Peter to blood test after blood test, but the hematologist wants to see new counts next week, and I admit that I am curious about whether we really have a downward trend or just a dip.  If the counts don't improve or continue to decline, I think that anyone who wants to be sure to see Peter again should consider paying us a visit, or setting up a Skype session.  We just can't predict when the curtain will fall.

Big day ahead tomorrow --- we'll be on our own with all the finger pokes and needle sticks, counting the carbs and calculating how much insulin we need to correct and cover.  I plan to go to my paralegal internship as planned.  I completed a Powerpoint presentation for the head of the law firm from our hospital room last night. I'd like to get through another week and a couple more well-delivered tasks before telling them that I'm no longer a student at Roosevelt but will be enrolling online instead, IF they'll agree to keep me on.  I think they will.

Then there's school.  Peter eats breakfast there, and there's also mid-morning snack and lunch, so they will potentially give him three insulin shots a day.  Before he can go back (and we want him back ASAP), the doctor and school have to agree on exactly how it will all be done.  I expect it'll take a few days to get it all organized.

What is that Irish curse again?  Ah, yes: "May you have an interesting life".

Three in a Bed

Lutheran General Hospital, Park Ridge, IL

Sunday February 20th, 2011
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Here we are

I had a home visit set up for this afternoon with Peter's hospice nurse and social worker ... sort of a "meet and greet". But this morning Peter woke up in distress, with a racing heartbeat and struggling to catch his breath. We could tell he was scared, because he just wanted to hang on us.

Thus began multiple rounds of phone calls to pediatrician, hematologist and hospice nurse. Appointments for various tests were made for Monday. All this went on while I sat in Legal Research and Writing class, attempting to learn how to search for legal cases on Lexis.

By the time I got on the train to go home, Carl was beginning to agree with me that we couldn't let Peter suffer like this through the weekend. Our only choice was to head for the ER. Peter was ready to go to the hospital the moment I came in the door. I couldn't move fast enough for him.

Within 5 minutes of our arrival, the nurses had smelled ketosis and concluded that Peter was in diabetic shock. His initial sugar level was 740. He should have been unconscious. We knew he was at risk for diabetes and his sugar had been a little high for a year or so, but he had not been drinking and peeing like crazy as most people do when their sugar is out of control.

Soon we were transferred by ambulance to the PICU at the hospital where Peter had his bone marrow biopsy. He now has sensors all over the place, an IV infusing saline and insulin, and lots of doctors and nurses puzzling over him.

The weight loss we've been seeing is probably due to the diabetes. Apparently the panting and rapid heartbeat came from his body trying furiously to shed the sugar. We would have eventually reached this crisis point no matter what, but the Prednisone Peter started 3 days ago is probably what made the sugar go wild.

His pediatrician had prescribed the Prednisone because he just didn't know what else to do with a kid who seemed to be having respiratory problems for no reason. I told Carl that I really didn't want to give Peter Prednisone without knowing WHY we were giving it ... but I guess we all hoped that it would make him feel better no matter what the cause was.

We've had blood drawn quite a lot of times during the past few hours, and Peter's counts are stable or better than they were a week ago. I'm not talking about major swings, but he doesn't seem to be going down the tubes.

There are a number of mysteries here. I couldn't begin to set down all of the questions I have about what's going on inside Peter's body. During the next few days, we'll be doing all kinds of tests to check out all of his systems. Who knows ... maybe we'll find some weird tumor somewhere that is secreting some toxin that is killing his bone marrow. (Oh, all right, probably not).

Peter decided not long after he arrived here that he was hungry. Eating was (is) out of the question at this point. Peter did not like that answer. He had a bipolar hissy fit, thrashing and crying, for 45 minutes. Eventually it occurred to me that we have Ativan at home that we use when he's having a really, really hard time. The ICU staff were very happy to give him a shot, and it made him much calmer. Then he'd look at everyone who came in through half-closed eyes and slur his words as he said, "is it time to eat yet?"

I don't want to think about what lies ahead. Peter eats compulsively. He has no self-control. He is hypersensitive to the slightest discomfort and freaks out at needles. He is going to be on a very limited diet. He will have at least 3 finger pricks and 2 insulin injections a day. We won't be able to let him out of our sight. We will have to lock all the cupboards.

He is going to rage and perseverate, perseverate and rage. His psych meds make him hungry all the time. He can't take NO for an answer. God help us.

So, we'll be having visits from pediatrician, endocrinologist, hematologist and hospice nurse tomorrow. Heaven knows what else will happen. Peter's already told me 1000 times (in between 5000 repetitions of "I'm hungry" that he WANTS TO GO HOME! NOW! Well, maybe not now ... he wants a burger and fries first.

Carl was here after dinner and Peter (a real Daddy's boy) took his hand and just held it against his cheek for the longest time. He turned to Carl and said, "I just don't know what's going on with my body, Daddy.". Then they both watched some weird NBA/celebrity basketball game with a lot of tall black dudes and Justin Bieber. I am not making this up.

I find it hard to imagine how I can continue my extremely demanding paralegal program now, but I'm reserving judgment on that for now. I have about 20 hours of homework to do this weekend. It sits in my briefcase on the comfy sofa where I'm about to sack out. I don't have the energy to think about it right now. Five days of midterms will start a week from Monday. Yeowch.

I am OK. I just surf from moment to moment, and figure things out as I go along. My inner control freak is a shadow of what it once was. Just one of the benefits of being over 50.

For those of you who pray, I would start with a cheeseburger and fries.
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Helping Hands

I'm usually an ace when it comes to finding things on the internet.  Looking for a hospice program for Peter, I was defeated.  I couldn't find one with a pediatric focus.  Our hematologist (who abandoned us once he finished his tests and we chose not to do a transplant) said he didn't know of anything.  Our pediatrician (nice man, not experienced in this area) said he'd ask around.  I was about to cold-call Children's Hospital downtown, although it's not close enough to be convenient.

And then -- voila!  An "internet friend through Indian adoption" read some of my posts on Facebook and found Unity Hospice, a wonderful program that has a facility right here in Skokie.  They actually operate in several states, though they don't have pediatric programs everywhere.  Here's a link to their Pediatric Palliative Care page for our area:

http://www.unityhospice.com/services/pediatricpalliativecare.html

I called as soon as I got home from school and spoke with Susan, a pediatric hospice nurse with 21 years of experience.  This is how she started:

"Tell me about your son."

Susan and her social worker will be coming here on Friday for an initial visit.  The physician who works with them will be taking over Peter's medical care.  Peter will visit Susan every two weeks at first, then more often as needed.  There will be CONTINUITY.  The physician is an expert in pediatric palliative care.  Susan is an expert in pediatric palliative care.  The social worker is an expert in pediatric end-of-life needs.  And ... they take public aid.  Whew.

From now until the very end, we'll never get a bill from Unity.  They will provide just about everything we need, including some "comfort medications" when the time comes.  They'll take care of the details.  That is such a relief!  There are going to be SO many details.  At the end of the first phone call, Susan gave me her personal cell phone number and told me I can call her anytime.

Carl took Peter for a chest x-ray this afternoon because of Peter's ongoing chest pain.  Peter's lungs were completely clear and his heart was perfectly normal.  Then they stopped by our pediatrician's office and were able to speak with him for a few minutes without an appointment.  He doesn't really know what is causing Peter's discomfort, but he prescribed 5 days of prednisone.  I did some quick reading and learned that prednisone is often given to kids with blood disorders, leukemia, etc.  I couldn't find out why, but I'm guessing there must be some inflammation somewhere.  I don't think 5 days will do it, but we'll be seeing the palliative care specialist soon to discuss all of this in greater detail.

Peter's also taking a little ibuprofen at the pediatrician's suggestion.  I didn't dare to give him any because it's a blood thinner, but the doctor said it would be safe in small doses.  Peter's currently watching cartoons and he just wolfed down 1/2 a canteloupe.

My "internet friend through Indian adoption" also offered us her frequent flyer miles to get Peter to SPICE or help with any other travel.  Such a loving gesture.  I am so honored by all of the helping hands that have been reaching out to me.

"You probably don't remember me, but when I was adopting 10 years ago, you gave me advice on developmental delays and learning disabilities, and you were so patient with all my questions ... and it made such a difference ... and I just want to know how I can help you now".

Not just one or two emails like this, but a steady stream.  My SPICE friends all over the US and Facebook friends all over the world have been unstinting in their concern and support.  I've been in touch with a handful of people who have themselves endured the loss of a child.  They've all been pushing me to get connected with hospice now, to be proactive, to always keep the long-term situation in mind when making each decision People who have watched their children suffer don't mince words when it comes to advising other parents.

Mom and Dad always taught me to look 10 car-lengths ahead when I was driving instead of focusing on the bumper of the car in front of me.  I think that discipline is serving me well in more ways than they ever imagined.

Just not himself

Still adjusting to the new reality.  Peter finally went back to school today, but only lasted 1/2 day before going to the nurse and asking to come home.  Actually, he had pains in his chest multiple times during the morning, and finally his teacher walked him to the nurse because he felt it made no sense to keep him in the classroom.  The pains aren't acute, but they're pretty constant.  He says it hurts when he isn't breathing, and it also hurts when he breaths.  He says the pain can be anywhere from his upper chest to his abdomen.  When he's not feeling well at home, he keeps "plugging in" to me or Carl, wanting to bury his face and have his back rubbed.  He's done that at least 5 times since I got home from my my first day of internship about 90 minutes ago. 

The pediatrician refilled the albuterol for Peter's inhaler last week and we've been giving it to him quite regularly.  Peter only needed his inhaler a few times in the past 10 years.  It's not clear whether he really feels better afterward or not.  He says "kinda".  We have an RX for prednisone to give him next, but Carl is going to ask whether the doctor actually heard wheezing before he starts giving it.  It's not 100% clear to me that we have a lung issue here.  All we know is that it "hurts inside". 

Prednisone is an immune suppressant, so I don't want to give it unless we're pretty sure of what's going on.  It could also mask other things that might be going on.  Steroids tend to increase a person's feeling of well-being.  They eat better, and generally feel more perky.  Peter could probably benefit from that, but I don't want to miss something more serious that might be going on -- and have it suddenly get much worse when we should have caught it sooner.

Peter is very close to a neighbor family who hadn't seen him in a couple of weeks until yesterday.  After he came home, the other mother called to exclaim over his weight loss, and his lethargy, and the circles under his eyes.  It all seemed to happen so quickly, she said.  I know, I said.  This takes some adjustment.  I don't want it to be like this, but I have no control over this situation.

I would like to see Peter staying in school despite feeling icky some of the time, but unless that's what he wants, it isn't going to happen.  When he's pulled some "I don't feel wells" to come home and play video games, or escape some schoolwork he didn't want to do, we've been fairly firm once we figured out he wasn't really sick.  But he really does feel icky now.  Carl thinks that Peter's best quality of life will come from letting him choose how he wants to spend his days from now on.  I have been wanting to keep everything "normal" as long as possible.  "Normal" kids don't get to choose whether they go to school or not.

I think Carl is probably more right than I am, but it still feels odd "changing the rules" when Peter still doesn't know what's going on.  The pediatrician's nurse called today about palliative care and family support, but I wasn't here to take the call.  Hopefully I'll catch up with her tomorrow.  I feel like Peter needs to know something more than "my blood is sick" -- though I'm not sure what.  And maybe I'm wrong.  I hope I can find someone out there to give me some guidance, or possibly to even talk with Peter without me there.  I sense that he is anxious and scared but he shuts down when I ask any questions.  Maybe he would open up more to a 3rd party.

This is the new normal.  I keep hearing what a heroine I am for my strength and courage and blah-di-blah.  I don't know a single one of my friends who wouldn't do the same thing if they were in my situation.  If you love your kid, you find some part of you that you never knew was there and you do everything you can to extract the most good from a really bad deal.  My courage feels to me like the milk that fills new mothers' breasts and spills out when their babies cry.  My body is making it for Peter.

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.

Lurching forward

We were at the breakfast table this morning when Peter emerged from his room dressed for school, but with a pained look on his face.  He said that his chest hurt every time he breathed.  Sometimes in the morning he'll claim that he feels sick because he'd rather stay home and play video games.  This time it was obvious he didn't feel well.  We gave him a couple of puffs of albuterol and sent him back to bed.  While I was downtown at class (my paralegal program started in late January), Carl took Peter to the pediatrician.  I was afraid that his mild cold might have turned into pneumonia.  The pediatrician said that Peter's chest was clear and his oxygen saturation was good, so there was nothing immediate to worry about.  That was a relief.  We got a refill on the albuterol.  Gosh, we must have used gallons of that stuff when Peter was tiny.  Round the clock nebulizer treatments for at least 3 years.

One of Leo's friends came over tonight, someone who hadn't seen Peter in a few weeks.  She noticed his weight loss right away.  It really seems to have happened quickly.  Leo remarked that Peter seems to be going to bed earlier and earlier these days, and actually sleeping.  He's right -- it used to be that Peter would head for bed around 8:00 and then watch movies on his DVD player until 11 or 12.  Now he's sound asleep by 8:30 every night.  Leo and Annie have been quite stricken since last night when we all realized that Peter had changed.  It was so easy for all of us to imagine that things would go on like this forever, living with a boy who is terminally ill but not sick. 

The pediatrician said he couldn't tell us anything about anemia and weight loss, because he just doesn't see cases like Peter's as part of his ordinary pediatrics practice.  I checked some articles on the web and learned that unexplained weight loss is definitely a symptom of severe anemia.  Had we not gotten the unexpected blood test results in October, this might have been Peter's presenting symptom.  And we probably would have welcomed it, thinking "Wow, Peter is finally slimming down!  Doesn't he look great?"

Peter has been going through a "love you forever" spell since we got back from India.  Some of you moms and dads out there probably remember the story by that name.  It's incredibly touching.  A mother holds and rocks her baby boy while he sleeps, even when he's a grown up man.  While she rocks him, she sings,

I'll love you forever
I'll like you for always
As long as I'm living
My baby you'll be

Almost every day Peter will come up to me and say, "Mommy ... ?  I'll love you forever!"  Sometimes I can be a bit distracted and I'll say, "I'll love you forever too, baby."  Then he'll say, "Noooo, Mom, I'll love you FOREVER, Mom ..."  and that's my cue to finish the verse.  At the end of the story, when the grown man has begun to neglect his grey-haired mom because he's all caught up in his busy life, he suddenly realizes that that she has grown old and frail.  So he comes to her house and sneaks into HER bedroom while she's sleeping, and rocks her in the old rocking chair, saying,

I'll love you forever
I'll like you for always
As long as I'm living
My mommy you'll be

That's the way it's supposed to be.  That's the way it's supposed to be.

But this is just the beginning ... and I swear in the style of Scarlett O'Hara that with God as my witness, this boy will NOT look into my eyes and see fear or grief.

Be careful what you wish for

Peter's been obese for a long time, ever since he started taking medication for his bipolar disorder when he was eight.  In just a few months, he transformed from a "skinny midget" into a short hulk.  He put on weight so fast that his skin nearly popped -- as evidenced by huge stretch marks all over his body.

Well, Peter is ... finally ... losing weight.

I said to Carl the other day that I thought Peter had lost weight.  When you see someone every day, you don't notice things as readily as you otherwise would.  But I didn't think about it much.  Today I took Peter for a much-delayed haircut.  Our haircutter Mira, who has known him since he was 6, took one look at him and said, "Wow, Peter, you've lost weight!"  She hadn't seen him in about 10 weeks.

When we got home I snapped a quick picture of Peter and then rummaged for the last weight measurement we took.  It's undated, but it says 4'7", 134 lb.  I managed to persuade Peter to get on the scale just now, and his weight measurement was 119.5.  No wonder his clothes are swimming on him.

He likes to wear an old t-shirt for haircuts, so that his other shirt doesn't get prickly.  Today when he put it on, his belly didn't stick out like it used to.  That is a HUGE weight loss in just a short time.  I have to believe that it is a result of his bone marrow failure, but it's hard for me to understand how.  His white count is low, which means a weak immune system, and it's true he's had a string of mild colds, but he's always recovered quickly and hasn't been at all anorexic.  (He was very anorexic as a baby and toddler, so I know it when I see it!)

His red count went up a little the last time we measured, though it is still very low.  He should be acting very sluggish.  I don't know ... is he?  He isn't complaining about being tired all the time the way he was in the fall.  With the weight he's been carrying, he hasn't been terribly athletic, and it's the middle of the winter.  He does seem to be sleeping a little more, but is that just my imagination?

And then there are the platelets.  They affect clotting, but I can't see that they could affect his weight.  We had hoped that when Peter went through puberty, he would grow a little taller and slim down a little.  Well, we now know that he'll never have puberty, so it just seems inconceivable that this weight loss could be a result of normal developmental factors.

I go for days or even weeks without thinking about Peter's illness.  Well ... no ... people do ask me how he's doing, and I say, "he's still asymptomatic -- isn't that amazing?"  But I don't really think about it, or feel about it.  Today when Mira exclaimed about his appearance, a knife turned in my belly and a sob rose in my throat, just like that.  Then Peter mentioned how much he's looking forward to SPICE Indian heritage camp in June.  I know all of our friends there are looking forward to seeing him too.  And it might ...

...

I'm waiting a couple of months between blood tests these days.  In a couple of weeks, we'll do another.  I hardly know what to wish for.  It may be time for some new clothes.  He's quietly thrilled to be slimmer.  We should celebrate.

               Peter now ...                                               ... and Peter last July at SPICE