A new perspective

Today we visited Dr. Goodell, Peter's hematologist, as a follow-up from our last conversation when Peter was hospitalized for his diabetes. 

Peter had his blood tested again last week, and his counts showed some recovery from the low point they hit right after his diabetic crisis.  We were very surprised to see his platelets up to 40, when they were only 14 a few weeks earlier.  I asked Dr. Goodell to do another test this morning to verify the platelet count, since Peter and I leave tomorrow for Dubai, and it's helpful to know where things stand.  The results were interesting.  Peter's white count dipped again (in just a week), red remained unchanged, and platelets were a whopping 43!

Dr. Goodell has reminded me more than once that with numbers this small, they have to drop quite a bit before you can say that they've really changed.  The measurements just aren't that precise.  Also, blood counts can bounce around a lot on their way down.  We had already seen some of that, but never in the platelets.  14 in platelets is getting to the point where spontaneous bleeds can occur, but 43 is fairly safe.

Peter's red count and hemoglobin (the protein in red cells that carries iron and transports oxygen) are pretty low and that explains why he sometimes feels weak and shaky.  He does get winded easily these days.  Dr. Goodell says we might see some recovery in the red and hemoglobin in a month or two.  Red cells have a lifespan of 100-120 days and what we're seeing now is still impacted by the severe untreated diabetes of a month ago.

White count can bounce a lot faster than red count and hemoglobin because white cells have a lifespan of 13-20 days.  Last week we saw a nice recovery and now Peter's white count is the lowest we've seen.  The infection-fighting component of his white blood cells is pretty low, so he's susceptible to infection.  I'll have to keep his hands well sanitized on our trip.

Platelets can bounce a lot even from week to week, because their lifespan is only 8-10 days.  We're seeing a very nice uptick now but it could just as easily drop again ... and then go back up ... and then heaven only knows.

The BIG news is that we have some new information that changes everything.   Right after Peter's aplastic anemia was diagnosed, we went on a fishing expedition for older blood tests that could tell us how long Peter might have been living with his condition.  This was important, because it could have given us an indication of the pace of his downward slide.  Unfortunately, we couldn't find anything in his pediatrician's file.  Peter was not a boy we wanted to poke unless it was absolutely necessary.  And it wasn't necessary!

BUT:  Back in April of 2008, Peter saw a pediatric gastroenterologist at Advocate Lutheran Children's Hospital, the same place where his hematologist and endocrinologist have their offices.  He's had chronic poop problems, and I wanted to rule out celiac disease (gluten intolerance).  I had totally forgotten that the GI doc had ordered a blood test.

Apparently those test results were never entered into the hospital's "system", so they were invisible to all of us ... UNTIL ... a med student working with Dr. Goodell found them at the bottom of Peter's paper file.  Dr. Goodell couldn't wait to show them to me.  Peter CLEARLY showed the signs of aplastic anemia three whole years ago!   This means that he has been living with low counts for a long time with no apparent symptoms.  Despite the bounces we've been seeing in the past 5 months, his decline has been slow and gradual.  There is NO reason to think that it won't continue that way!

It's pretty obvious that the GI doc never looked at the results, because I should certainly have gotten a phone call telling me to see a hematologist.  (In retrospect, that's actually a blessing, because Peter would have been getting a lot more blood tests during the 2.5 years when we didn't know about his condition.)

Suddenly the frame of reference is entirely different.  I can't say that I have a dying kid anymore.  What I have is a kid with a chronic condition who is NOT SICK!  Dr. Goodell says there's a good chance Peter could hang in for a year, or two, or even three.  He could also go into a steady decline at any point.  But based on the data we have, we're not expecting that for a while.

PETER WILL UNDOUBTEDLY GO TO SPICE!

Ironically, our hospice nurse came with us to this morning's appointment so she could introduce herself to Dr. Goodell.  Now we're putting hospice on hold for a while, though we'll still stay in touch so that we can re-initiate his case at any time. 

Last weekend, the people from Make-a-Wish came to see us, and we started to plan a trip to California in May so that Peter could see all of his special relatives who live there.  (That's my boy ... forget Disneyland, I want to see my cousins!)  Now I think I'll put that on hold for just a little while, since we're going to Dubai now and we'll be going to SPICE in June.  Dr. Goodell thinks we should do the Make-a-Wish trip fairly soon while Peter is still feeling well, so early fall seems like a good time.

Since Peter's hemoglobin is still very low, Dr. Goodell talked to me again about transfusions.  Initially we had decided that we wouldn't start transfusions, because there's no end game.  How could you ever decide to stop?  It just seemed better to never start.  But now Peter's platelets (which were our gravest concern) are back up to 43, higher than when his condition was diagnosed.  His white count is low, but he is NOT SICK.  Things aren't likely to go downhill quickly.  So why not give him some red blood cells now and then to make him a little more perky?  He's got time!  Let's make it even better!

We were prepared to give him a transfusion today, so that he could be at his perkiest while we're in Dubai.  Dr. Goodell talked to him about it, but Peter had been stuck three times already (once for CBC, once for cross-match, and once when they couldn't find a vein).  Peter was adamant:  NO MORE POKES!  But we'll be visiting Goodell again in a month, and if Peter's hemoglobin is still very low, we'll try persuading him again.  It did take a shot of Atavan to get his I.V. in when he went to the hospital for his diabetes ... but maybe if we bribe him he'll go for it.  I'm already talking with him about it in bits and pieces so that he starts getting used to the idea.

As for the end-game, Dr. Goodell said he'd been thinking a lot about that.  He said that in his experience, the kid is the one who tells him when it's time to stop transfusions.  At some point, Peter is going to start being sick.  He'll get infections, run fevers, bruise easily, get nosebleeds ... and we'll recognize that it's time to stop.  That was a persuasive argument to me, and our hospice nurse agreed.  This has always been about Peter living as as long as possible as a happy, healthy boy.

To everyone who's been praying, I just ask you to keep on doing what you're doing.  Every extra month is a gift.  The future may still be uncertain, but I'll take it exactly the way it is right now!

Wrapped in love

I just opened a package that came to the door, and inside were a comfort blanket for Peter and a comfort shawl for me. My dear SPICE friend Patty Reents crocheted them by hand in the colors of the Indian flag, and sent them on behalf of all of SPICE.

Peter is out with his bike for the first time this year. This is the note he'll see when he comes in:

Dear Peter,

I crocheted this prayer, or comfort, blanket just for you. I heard from your mom about what you are going through with your diabetes. I'll tell you a secret --- I hate needles, too! So I made you this blanket to comfort you when you are feeling sad or scared. I made it in the colors of the Indian flag to remind you of SPICE and of your trip to India. I prayed as I crocheted the blanket that you would not be scared and would find comfort in everyone who loves you.

I told everyone at SPICE that I was making this blanket for you and that I wanted it to be from everyone at SPICE along with … my family. Some people sent notes for you to send with the blanket. But everyone is thinking about you and sending lots and lots of good wishes in their hearts.

So when you feel scared or upset, wrap yourself up in this blanket and think of all the good times at SPICE and in India. Think of all your friends at SPICE --- kids and grown-ups. We all love you very much! Wrap this blanket around you and let it feel like a gigantic hug from all of us.

With lots of love,

Patty and Bill


Someday I plan to share my shawl with someone else from SPICE who needs comfort. Then it can be passed to the next person. I know the prayers woven into it will never run out.
Sent from my Verizon Wireless BlackBerry

Shaky

With a threatening nuclear disaster in Japan as a backdrop, life feels pretty shaky here right now.

Peter keeps waking up with a swollen face.  Yesterday we let him stay home because he was embarassed, but we decided he couldn't stay out forever.  It's not painful, just puffy, so that his eyes are little slits.  It goes down by the end of the day.  Allergy medicine doesn't seem to help. 

So this morning, Carl got him up for school and then let him sleep longer when he said he was feeling weak and shaky.  I got him up a couple of hours later so he could eat some breakfast and keep his blood sugar up.  He went willingly off to school soon after, but then realized his water bottle was downstairs and hurried down to get it.  When he got back up, he leaned on Carl a little saying, "Daddy, my heart is pounding so fast!"

Carl and I just say, "Mmm hmm" when he mentions things like that.  What else can we say?

Just now a representative of Make a Wish called to set up an appointment to meet us on Saturday.  Peter asked who was on the phone, so I asked him if he had heard of Make a Wish.  He said no.  I said, "Well, it's a group of people who give wishes to people like you.  You know, like having all those blood tests because your blood is sick.  You get to choose where you want to go, or what you want to do."

"I don't WANT a wish."

"Oh, I think you should wait and talk to the man from Make a Wish before you say that.  Isn't there some place you'd like to go?"

"NO!"  (typical Peter)

"How about going to California to see Shilpa and Sanju and Sahil and Aisha?"

"Oh, yeah, I want to see Shilpa and Sanju!  That's what I want.  But nothing else."

"Hey, we could go to Disneyland while we're out there."

"No.  We WENT to Disneyland."

"Wait, that was Disneyworld, in Florida!  Disneyland is in California. It's different."

"No it isn't!  I don't want to go to Disneyland.  It's MY CHOICE!"

At this point, it was obvious that the conversation had gone on far too long already, and it was my fault.  But just like it is typical Peter to be contrary about anything special he is offered, it is also typical Peter that his biggest wish would be to see his Indian cousin and her family.  Shilpa is the daughter of Sheela, my Indian sister, who we will be visiting in Dubai later this month.  When I was an exchange student in India in '73-'74, Sheela was 18 and just starting her medical training.

That reminds me -- Peter needs t-shirts!  Everything he has is too big!

Fit for a King

I scooted down to Chicago's Indian district on Devon Avenue with Peter on Friday evening.  He was very excited about getting some "real" Indian outfits with lots of bling.  I took him straight to Al-Raheem Sari Centre, where I often find nice outfits at reasonable prices.  I've bought so many things there that I'm greeted like a family member when I come in.  We went straight to the back and started looking through outfits in sizes 14 and 16, with chest measurements around 40.  Peter immediately fell in love with the cream silk one with sparkles ALL over it, though it was marked $250 and I certainly was not going to pay that kind of money!  The shop's owner came over with piles more outfits in the same price range and when I protested, she said "Don't worry, I give you good price".  She's actually been good to me before, so I allowed Peter to try on and choose 3 outfits which he'll wear day and night at SPICE.  The cream and red ones need to be significantly shortened but the navy one is not a bad fit, all things considered.  I loved watching him admire himself in the mirror, pursing his lips in that funny self-conscious way he does when he likes what he sees.

While talking price with the shop owner, I considered whether I should tell her quietly why I was buying 3 fairly expensive outfits at the same time and see if that would get me an even better price.  Well, I am shameless.  She gave me all 3 outfits for $250, a very good price indeed.  (Never mind that they would cost about half that in India, this is Devon Avenue we're talking about).  She recommended a good tailor and called me the next morning to tell me that she had already spoken to him and asked him to give me his best price for the stitching.  She went on and on in Hindi telling me what a good person I am, etc. etc. etc. (as if she wouldn't have cared for her own child the same way!)  I responded using my rudimentary Hindi that I was just a mother.  She's a mother, I'm a mother.  We love our children.  (I'm very proud that I can say that much in Hindi, since it's all self-studied).  Anyway, I got my point across. 

Then we went on down to Sukhadia's Sweets, where all sorts of goodies (sweet and savory) can be purchased.  The last time we were there, Peter and I both had our favorite snacks and then finished up with mango ice cream.  This time we had to carry our snacks home with us so that I could test Peter's blood-sugar before he ate his.  He brought home freshly-fried pakoras (batter-dipped veggies) and I chose bhel poori (spicy puffed rice and other crunchies with chunks of potato and onion, fresh-cut coriander leaves and a sweet-and-sour chutney to pour over it).  Peter looked longingly at the jalebis (crispy pretzel-shaped fried sweets soaked in rose-flavored syrup).  It's not that he can't have one ... but he didn't beg, and went home happily with his pakoras.

The outfits now hang in our dining room and Peter glows every time he sees them.  I'll be taking them down to the tailor soon.  I settled one important thing when I bought them.  It's good to have that settled.  It'll be the cream one.  I like the navy one better, but the cream is his favorite.

Theology

The hospice chaplain came by the other day to ask how he could help us.  I told him I welcomed his presence in our lives even if I couldn't provide a good answer to that question.  Let's see ... Carl is a Catholic who attended Jesuit schools and has had no involvement with religion since he was old enough to make a choice.  I was raised Protestant, then liberal/social action/unaffiliated.  When I went to Oxford for my graduate work I fell in love with a man who was a high-church Anglican.  Eventually I became one too.  I loved the ritual of the liturgy, and I imagined that I believed the words that went with it.  I certainly tried hard enough.  Leo, Annie and Peter were baptized Episcopalian, but have rarely attended church.  When I was working, I was simply too exhausted on Sunday mornings.  I needed to worship St. Mattress.  Now I belong to a small Unitarian community where God is optional.  I like that. 

I told the chaplain that I really don't believe in anything that might be referred to as "spiritual".  I believe that The Golden Rule is the fundamental moral underpinning for my existence as a human being.  I believe that as humans, good and evil are always at war in us.  But taken as a whole, I believe there is far more good in humanity than there is evil, and I believe that good will always triumph in the end.  Good triumphs over evil in small ways every moment of every day, even in the places where evil is the strongest, when good people reach out to help one another.

"When I was a boy and would see scary things in the news, my mother would say to me, 'Look for the helpers. You will always find people who are helping.'" ~ Fred Rogers

"When I despair, I remember that all through history the ways of truth and love have always won. There have been tyrants, and murderers, and for a time they can seem invincible, but in the end they always fall. Think of it always."  ~ Mahatma Gandhi

Of course, the chaplain has never met a family like ours, nor a person with as peculiar beliefs as the ones I hold.  One of my favorite things about Christ's teachings is the understanding that no matter how special and important I may think I am, I am no more worthy of understanding, respect and love than any other person on earth.  Even -- and this is a stretch -- Mohammar Ghaddafi.  In the past when I've said The Lord's Prayer, I've focused most on the forgiveness part (the forgiveness I ask for and the forgiveness I am obligated to grant) and on the powerful words "thy will be done".  When I've prayed, I've asked for the strength to face what's in front of me, and the grace to find joy and beauty in the world around me every single day.

I don't need to pray for Peter's life.  That gift has already been bestowed on me.

Afterlife?  It's nice to think about reincarnation as a possibility, but I can't buy it any more than I can buy heaven and hell.  I think the white tunnel comes from our last moments of consciousness when the brain is about to stop.  Nevertheless, it gives me great comfort to imagine Mummy and my dear Nana waiting at the end of the white tunnel for Peter.  I've gone ahead and used the image of heaven to help my kids accept the inevitability of death without fearing it too much.  When we had to put a cat to sleep, I had the kids draw pictures of "kitty heaven", full of tuna and scratching posts and catnip and soft cushions to sleep on.  If Peter ever reaches the point where he understands that he is dying, I won't shy away from talking with him about heaven.  I'll tell him that Nana and Grandma Shanti are there waiting for him, so he won't ever feel afraid.

Today I started to write the lyrics to a special song for him.  I'm thinking of setting it to the tune of Leonard Cohen's "Halleluia" and asking my Unitarian choir if they will let me sing it with them and record it.  “Peter’s Heaven” … There is no diabetes in Peter's heaven.  And no bipolar disorder.  You are surrounded by friends who always want to be with you.  All the cats sleep on your bed.  You can have all the dark chocolate you want.  No one ever calls you a fat freak with a tiny head.  Everyone slaps you five whenever they see your smiling face.  And if there's a God, He slaps you ten.

I know, but it still hurts

I've had the hospice nurse, social worker and chaplain here recently. 



Peter and his "girls" at SPICE 2005



I'm working on the arrangements for Peter's cremation.  I've started to think about the open house we'll have here to celebrate his life, and the slide show I'll make for the first SPICE after he's gone.  Our SPICE friends are our family.  I won't really grieve until I can grieve with them.  They have nurtured and accepted Peter just as he is all these years.  Nowhere else does he feel so wrapped in love.  The rest of us feel the same way.  We'll need our SPICE friends when the times comes.

We'll spend the rest of Peter's trust on a trip to Kolkata for Leo and Annie and I.  We'll ask our friends at Shishur Sevay, and Gibi, and Seema Gupta, and our loved ones at SICW (Peter's and Annie's orphanage) to join us at the edge of the Ganges (called the Hooghly in West Bengal) and lay his ashes to final rest there.  I know my grown-up sponsored children Maria and Partha will want to be there too.  Peter is known and loved in Kolkata.  I'm sure our dear ones there will help us give him a proper send-off.



I can't quite bring myself to start working on the slide show.  I know I could need it at any moment, but I probably won't need it for a while.  Except I could need it at any moment.  This is where the feeling of "jinx" comes in.  Irrational, but it holds me back.

Yeah, I'm doing all this stuff.  I've even chosen a charity that I hope all of Peter's friends will give to in his name.  Something important.  Yeah.



Peter and Kaveri at SPICE '07



The people from Make a Wish just called me back to say that they talked with Peter's hematologist and he gave them the information they need to move forward with Peter's wish.  They'll send someone out here in a week or two to work with Peter on that.  Apparently, they have ways to elicit wishes from little kids who don't really understand what's going on. 



Christine from Make a Wish said, "well, ordinarily we try to do something when the child has 6-12 months to go, but your doctor said that in Peter's case, we should do something sooner, in the next 3 months."  All the while, Peter is sitting at the computer next to me playing his Harry Potter game.  He is FINE.  FINE.  HE IS ABSOLUTELY FINE.

The doctor would never put together a number and a month for me.  I know what he said to Make a Wish is just arbitrary -- it means it COULD happen that soon, not that it will.  It could be much longer.  I know that.



Peter and his Krishna bag at SPICE 2010



Still, I have to turn my face away from Peter as I type this because I am wracked by sobs after hearing the word "3" followed by "months".  I'm practical.  This is not news to me.  But oh, my little boy.  I'm not ready to lose him.  But as I sit here, I feel a hang clasping my shoulder, and I know it's my Indian Mummy, Shanti, saying in her gruff, down-to-earth voice, "Baby, you must not cry. This is what life is, our destiny is fixed, what can we do?  We were all blessed to have Daddy with us for so long, but we would not hold him back when it was time.  We were happy that he went so peacefully.  You must pray for the same thing for Peter."



I can hear her voice as if she is sitting right behind me, and she is the greatest comfort I have.  This is a woman who looked life straight in the face every moment of every day and never flinched.  A powerful woman.  She was dry-eyed and firm in her purpose when she insisted on entering the crematory to say a final goodbye to Daddy's body.  Women traditionally aren't welcome in crematories in India.  She did what was expected every day of her life, but on the day Daddy died, she did what her heart told her to do.  I am going to be like THAT, Mummy.  I am going to be like THAT.



I asked the hospice social worker what choices we would have if Peter died in the hospital.  If something happened, we might not know right away that it was terminal.  She said that we could do pretty much whatever we wanted.  I broke down when I told her that I need to wash him, and put cream on his skin.  She asked if I'd like her help with that.  No, it's something I need to do on my own.  I think Leo and Annie will want to help.  It's OK if they don't.



Peter is already too thin for the voluminous Indian outfits I had made for him last year.  He loves to wear his Indian clothes every day during SPICE.  His drawstring "pyjamas" will still fit, so I'm thinking of going down to Devon Avenue to look for 3 fancy men's Kurtas that can be cut down a bit to fit him.  He's still too broad and short to fit any ready-to-wear size.  I want him to have a Sherwani.  He deserves a Sherwani.  He's going to have a Sherwani, for now and for then.  My precious little man.

The Futia boys

Leo went through his closet just now and found a sportcoat that no longer fit him.  He offered to try it on Peter, and Peter (surprisingly) allowed him to.  (Peter doesn't like being touched unless he initiates it, and hates trying on clothes).  Of course, Peter could barely squeeze into the extra-slim size that Leo needed, but he was still as pleased as punch and made Leo hang it in his closet.  Peter never had a sportcoat because of his weight.  He's taking such pride in his appearance since he lost some weight recently.

All is still going very well with Peter's diabetes.  He is accepting it calmly and even limiting his intake a little because he "doesn't want to get fat".  After a lifetime of bipolar meltdowns, this is nothing short of miraculous.  I'm taking Peter to Dubai at the end of the month to spend a week with his Sheela-Aunty and Gokul-Uncle (my Indian sister and brother-in-law).  He is so thrilled!  Peter's "cousin" Sanju (Sheela-Aunty's son-in-law) is also coming from California for a few days to oversee some repairs on a house he owns here.  Peter can't wait to see him again.

Leo is still unemployed.  In the meantime, he has become quite a dandy (a process that was starting before he lost his job).  He even applied for a job at Express, the place where he buys his clothes.  We're hopeful that one of the applications he's put in will generate an interview soon.  Leo will enjoy helping Sanju with his home repairs (especially the driving around to get stuff in his dilapidated Toyota).  He's invited Peter to ride along whenever Peter wants to.  Not all of this is due to Peter's illness.  He's actually more stable and less reactive now than ever in his life.  A pleasure to have around most of the time!  Amazing.

Peter has a small special needs trust that we had planned to build up using his SSI after he reached 18.  Now it makes sense to spend it on things to make him happy while he's still here.  The trip to Dubai falls in that category.  Memories to last MY lifetime.