Photo Gallery -- Peter's India

Click Here:  Photos of Peter from our Trip to India

Blood Counts

The latest blood results are in.  All of Peter's counts remain abnormally low and are not expected to recover. 

 

White count:  Has continued to decline slowly since baseline on October 22.

 

Red count:  Had been steady but is now up a bit driven by Hemoglobin

 

Hemoglobin:  Had been steady but is now up a fair amount.

 

Platelets:  Have fluctuated, but latest count is lowest ever.

 

I'm told that when the counts get really low, they can fluctuate somewhat randomly from test to test.  The tests are only accurate to within a certain range.  Peter's platelets are already so low that 23 may or may not be significantly lower than 30.  But in the bone marrow examined on 11/3, there were almost no platelet precursors.

 

Supposedly, spontaneous bleeding doesn't become a big risk until platelets are below 15.  At that level, there is usually bruising and little red dots where capillaries have broken under the skin.  Bleeding of gums and nose is common.  Bleeding behind the eye can threaten sight.  The most serious bleeds are in the head or gastrointestinal tract.  It's common for them to be fatal.

 

Peter's white count shows that he is at increased risk for infections but not yet highly susceptible.  He caught a cold in Kolkata which lingered a while but was never severe.  In the blood examined on 11/3, most of the white cells were mature, and there were very few white cell precursors in the bone marrow.  Since white cells have about a 30 day lifespan, I'm not surprised that the white count is down again 6 weeks later.  But among the various types of white cells, Peter's lymphocytes are doing best.  These are important infection-fighters so it's good to see them holding on.

 

The increase in Peter's Hemoglobin seems too big to be random.  Although the sample of his bone marrow that was biopsied showed less than 5% cellularity (<5% of expected stem cells were present), there was an abnormally high number of red cell precursors there.  So ... more precursors then, more Hemoglobin now?  Red cells live for 3-4 months.  So ... higher Hemoglobin (still abnormally low, but higher than earlier tests) for at least that long?

 

The doctors tell me that bone marrow failure often goes in fits and starts. Counts can drop quickly and then plateau for a long time.  One count can improve while another declines.  If we could see into the bone marrow as often as we do blood tests, we could have a better sense of what is coming down the pike.  All we know about Peter's marrow is that in very early November, it had a lot of red cell precursors.  We aren't planning to do another biopsy.

 

My research suggests that elevated red cell precursors may be a consequences of abnormal destruction of red blood cells (hemolysis) either in the bloodstream (auto-immune) or, more typically, in the spleen. I know another Indian child who has had very low red cells and platelets but normal white counts.  It was determined that her spleen was destroying red cells and platelets, and she just had it removed last week.  Her parents are hopeful that this will rectify her blood problems, although living without a spleen means that it'll be harder for her body to fight infections.

 

I've never really understood what the spleen does.  I know that people can live without one, so why do we even have them?  It turns out that the spleen does 3 important things:

• Filters out and destroys old and damaged blood cells
• Plays a key role in preventing infection by producing white blood cells called lymphocytes and acting as a first line of defense against invading pathogens
• Stores red blood cells and platelets

Peter's hematologist palpated his abdomen to see if his spleen was enlarged.  An enlarged spleen is seen in a number of different blood disorders.  When the spleen gets too large, it begins to filter normal red blood cells as well as abnormal ones, reducing the number of healthy red cells in the body. It also traps too many platelets. Eventually, excess red blood cells and platelets can clog the spleen, interfering with its normal functioning.

 

Unfortunately, Peter's obesity made it impossible for the doctor to feel his spleen.  Apparently enlarged spleens are often associated with enlarged livers.  The doctor talked about doing an ultrasound of Peter's abdomen to look at both of these organs.  I'm not sure if any of this really matters in a person suffering from a genetic bone marrow failure syndrome. Were we to observe an enlarged spleen, is there anything we can do about it?  I suppose that surgery could still be done with Peter's current platelet level.  But removing the spleen weakens the body's immune system, and with his white count going down, he's already immuno-compromised.

 

As I was looking over all of the test results, I noticed that Peter's Hemoglobin A1 (adult type) is low and that his Hemoglobin F (fetal) is high.  The hematologist told me that elevated Hemoglobin F is seen in a number of blood and marrow failure disorders.  Two of the most common genetic disorders are Thalassemia (seen most often in the Middle East, Asia and some parts of Africa) and Sickle Cell Anemia (seen most often in Africa).  Elevated HgB F is also seen in Fanconi's Anemia, which Peter does not have.

 

I found an interesting piece of research online (from the journal "Pediatrics") relating to diagnosis of specific bone marrow failure disorders.  Fanconi's Anemia is the most common, albeit so rare that it is called an "orphan" disease.  There are only a couple of other disorders that have been clearly identified.  Beyond that, complete molecular testing can reveal where the DNA abnormality is located, but that isn't very helpful.  "New" (previously unidentified) abnormalities are found all the time, and there are many others that have been found in one or two or a handful of people -- too few to characterize any kind of "syndrome".

 

It's hard for parents not to know exactly why their child's bone marrow is failing.  It's especially hard when the parents are considering having more children.  How can you screen for something that doesn't have a name or a practical genetic test?  Complete DNA analysis at the molecular level isn't something that can be done on a whole bunch of embryos to determine which of them are normal.  It's a long process, and it's very expensive. 

 

Children with unclassified syndromes often go through test after test to try to get to a specific diagnosis.  In the meantime, their blood counts continue to drop.  The only "cure" for bone marrow failure is a bone marrow transplant, typically from a well-matched healthy sibling.  Transplants using marrow from an unrelated donor have a much lower success rate and a much higher incidence of long-term side effects that can undermine quality of life.  But how can a family know whether a sibling is healthy when they don't know exactly what is wrong with the affected child's DNA?

 

But we are not biological parents, and we are not pursuing a bone marrow transplant.  So it really doesn't make sense to push for extensive genetic testing in Peter's case.  And that leads me back to the question about an enlarged spleen.  Do we care?  Will knowing that it is or isn't enlarged make any difference to Peter's long-term outcome?  This is a good question for the hematologist.  I'm guessing that the answer is no. 

 

And then there's the short-term outcome to consider.  We need to find out whether there are any tests whose results could give us the opportunity to give Peter more "good time".  I define "good time" as time when Peter can live relatively normally, do pretty much what he wants to do, hang onto psychiatric stability, NOT spend time in hospitals, NOT have frequent blood draws or other tests, NOT think of himself as a sick person.  Perhaps I am being overly restrictive here.  I can't ask Peter what "good time" means to him.  All I know is that whenever he has to see a doctor (for anything) or get a test, it's NOT a good time.

 

I asked the hematologist if he could hook me up with a counselor or therapist or social worker with experience in making end-of-life decisions for children.  He and his staff couldn't come up with anyone.  I suppose I should call Children's Hospital to see if they have any resources we can tap.  Things are especially complicated with Peter because of his bipolar disorder.  He is so easily destabilized, and when that happens, there are NO good times.  I wonder if there is anyone on earth who has experience in end-of-life decisions for mentally retarded, mentally ill children with genetic blood disorders?  Well ... fast forward a little and there will be me.

 

I was also struck by comments in the "Pediatrics" study about the overlapping clinical features of many genetic marrow failure syndromes.  Peter has quite a few physical anomalies, but in reading about the 3 most common syndromes, I discovered that many of his anomalies are common to all three -- common in the sense that some percentage of people with those syndromes have those anomalies.  None of the syndromes comes with a "must have" list for anomalies, just a list of anomalies that are sometimes seen.

 

This overlap makes even more sense to me after seeing the young man in India who looked like Peter's twin.  They have so many characteristics in common, yet it's clear they suffer from different syndromes based on some important things they don't share in common.  It would be so interesting to know exactly where the other boy's DNA defect is as compared with Peter's.  Entirely academic, but still interesting.

 

All this researching and reading and analyzing and thinking must sound pretty compulsive.  Heck, yeah. I have no illusions that it will change anything, but I feel stronger knowing more. It will help me continue making good decisions as time goes by. As far as tracking the blood counts is concerned, that too is a largely academic exercise.  The doctors say that there is no specific schedule for testing Peter's blood.  I imagine we'll want to get new numbers every couple of months so that we can prepare ourselves for some of the things that might happen when the counts get very low.

 

With today's results in hand, I expect that all three of the Futia children will be in Johnstown, PA this June for our beloved SPICE Indian Heritage Camp.  This will be Peter's 17th consecutive year in attendance. We all need Peter to have one more SPICE.

School's Out!

It was time to re-test Peter's blood (very anxious to see how fast counts are dropping).  Instead of fighting traffic after school on Friday, I waited until this morning and offered Peter a choice of restaurants for a mom-and-son lunch afterwards.

Peter actually does really well with blood tests, but he resists and groans before hand anyway.  So we have a tradition of a special treat afterwards.  Peter chose Wendy's today.  Last time it was a Thai restaurant where he ordered his #1 favorite, Shrimp Pad Thai.

I'm a lucky mommy to have a son who will always hold my big paw in his little paw as we go here and there.  Even though he's 16, he can get away with it because he will never experience puberty.  I did mention to him today -- casually -- that there is some medicine we can give him to help him grow up into a man.  He shook his head vigorously and said, "No! I don't want to grow up!"  I pressed him for a reason, and he said, "I want to be a kid so I can always live with you and Daddy".  I understand where this is coming from -- we talk occasionally about the group home he'll one day live in, where he can have a job and friends and a life of his own.  He hasn't seemed the slightest bit interested, but he still can't live with us FOREVER.

Except ... he can, of course.

It is so sweet having lunch with your child.  Why did I have to wait for blood tests to start this tradition?  Can I persuade you not to wait?  School's out, and memories are there for the taking.

Delhi Driver -- Delayed Post from 12/2

This update just bounced back to me and I don't want you to miss it.

From 12/2:
We have been so busy that it has become a battle between blogging and sleep ... with the obvious outcome.

We arrived in Delhi on Wednesday the 1st after our midday flight from Bangalore.  The new airport there hasn't been open long, and it is the usual blend of incongruities: spacious car park but woefully inadequate access roads; the latest in toilet fixtures but the same old stink; attractive landscaping marred by piles of rubbish (mostly plastic bags) thrown out of car windows.

The drivers I've hired in India have always been exceptional, but this one missed his calling as a Keystone Kop.  My travel agent sends the local car-hire agency a detailed itinerary for his arriving passengers.  This driver did not or could not read his.  He waited for us at the INTERNATIONAL terminal.  When we finally got him to come to where we were waiting ("Please come to the Domestic terminal!" ... "Yes madam, International terminal, I waiting") he led us to our rented SUV and began loading our baggage.

He was a very slight man, so he had to use all of his strength to fold up the seats in the far back and hoist our bags into the newly-created space.  The only problem was that only 3 seats remained in the vehicle for the 5 of us.  It took us quite a while to communicate this to him.  While loading, he apparently had no energy left for listening.  Finally I counted loudly for him in Hindi:

"Driver Sahib!!  See ... 5 people, only 3 seats!"

"Ohhhh ... 5 people???"

"Yes, Sahib, 1, 2, 3, 4, 5".

"Aachchaa? OK, OK, no problem".

He took out all the bags, flipped one far back seat down, and attempted to reload all 5 in space enough for 2 1/2.

Whoa! "Driver Sahib!  Stop!  5 people!"

"Ohhhh ... 5 people???"

"YES, SAHIB!  5 PEOPLE!!!  Bags go up!"

He stared at our bags with great disappointment.  This was something he had clearly not anticipated.  With help from traveling companion Erling, who did most of the heavy lifting, he eventually found a configuration that allowed our bags to fit on the roof rack.

He seemed very relieved when this was all done, and allowed himself a nervous smile while motioning us to get in the car.

"Wait, Driver Sahib!  You tie with rope!"

He stared at us with total incomprehension.  We pantomimed the act of securing our bags to the roof rack (this is standard in India) and eventually got through to him.  He went rummaging through the back compartment and proudly produced a length of rope.

"See, Madam? No problem!"

Immediately after leaving the airport we entered a hideous traffic jam that limited us to 1km in 30 minutes.  Apparently we got there at a good time of day.

Our itinerary requested that we drive down Rajpath and stop at a place where we could photograph the iconic India Gate.  Before reaching that part of the city, the driver really hit his stride.  He began pausing to point out every 5-star hotel we passed.  Never mind when I pointed to an interesting building or compound and asked (in Hindi) what it was. He was already preparing for the next 5-star hotel.

As for India Gate, when we reached its general vicinity, he waved vaguely in its direction and said "India Gate, Madam.  Now hotel?"

We tried to ask him to stop and circle around for a better look at Delhi's most famous monument, but he had clearly had an aural seizure leading to temporary deafness.

Typically, drivers determine from the client's itinerary what locations must be found, and prepare ahead of time to avoid getting lost.  This fellow must have been a recent migrant from a distant planet.  Our hotel sat in a neighborhood filled with dozens of similar lodgings almost entirely inhabited by foreign travelers.  In other words, this was tourist hotel central, and almost adjacent to the New Delhi Train Station.

Our driver had to ask for directions 4 times.  When he eventually found the right street, we had to find the hotel.  By that time he had given up any semblance of trying to guide us himself.

The next time we saw him was two mornings later when he glumly loaded our baggage atop the car while we settled our bills.  Mind you, he came 15 minutes late and took almost 30 to secure the bags.  Our next stop was the nearby Rail Reservation Center, where we were to meet our guide for an interesting walking tour.  We were already late, but I had a detailed map to show him, and since the RRC was NEXT TO the train station, it was reasonable to expect our driver to find it without delay.

Wrong-o.

Later we headed for the airport for our flight to Kolkata.  As we approached the terminals, I said loudly:

"Jet Airways, Driver Sahib".

He nodded.  A few moments later, at a critical junction, he turned to me and asked:

"International Terminal?"

"NO!  Domestic flight!  To Kolkata!"

"Ahhh ... Kolkata.  International Terminal?"

"NO!!!  DOMESTIC FLIGHT!  JET AIRWAYS!"

He veered in the right direction at the last moment.  Then came an immediate junction with a big sign saying JET AIRWAYS.

"DRIVER!!!  Jet!!!  Jet!!!  THERE!"

He crossed 3 lanes of traffic at top speed to make the required turn.  We were all pale and sweaty at the thought of going around the airport again in the horrible traffic.  But the driver was positively chirpy.  He smiled broadly, waggled his head from side to side, and said,

"See, Madam?  No problem!"

We're home

We arrived home in Chicago yesterday evening around 7, several hours later than planned.  Our British Airways flight from Mumbai to London was delayed 4 hours, and that meant a new connection from London to Chicago.  We had to sleep most of the night at Mumbai airport, which stops looking so "new" when you spend more than a short time there. I managed to charge my Blackberry while Peter slept on a chaise lounge.

The trip home was uneventful.  On both flights, we had an empty seat next to us and this greatly reduced Peter's anxiety since he did not feel so claustrophobic.  During our stop in London, we had a really nice meal.  As we walked into the restaurant, Peter asked me, "Mommy, do they have MEAT?"  I had a delicious salad (a big crave after 17 days of no uncooked vegetables) and Peter had a big burger.  We both had hot fudge brownie sundaes.  That's the end for me -- I'm 7 pounds overweight and will NOT let myself continue going in this direction.  I have enough on my plate without hating what I see in the mirror.

Our trip together was beyond all expectation.  Peter's bipolar disorder largely took a back seat, allowing the "real boy" to come forward.  I love all of Peter's boys, but the one not dogged by bipolar disorder is especially sweet.  I could never have imagined a trip with so much joy in it and so little anxiety and agitation.  I actually forgot to give him his extra tranquilizer most days in Kolkata.  This is unbelievable!

Dealing with pushy hawkers and beggars was the most difficult thing for Peter during our trip.  He felt very oppressed by people demanding things from him, following him, getting in his face, even touching him.  It was hard for him not to make eye contact and simply ignore them.

As expected, Peter wet the bed most nights and intermittently had poop in his pants.  I had prepared for those eventualities by purchasing 3 dozen pairs of cheap underpants at Wal*Mart.  When necessary, we just left underpants behind.  Peter always had a spare pair of underpants and a pack of wipes in his backpack.  When he needed to, he went in a bathroom to clean himself up.  He took the responsibility for staying clean and odor-free.  My objective was to help him maintain his dignity despite these problems, and he did.

At the end of our trip, Peter told me with full gravitas, "Mommy, I think I've had enough adventures for now.  I want to go home".

He took 9 flights.  He slept in 5 entirely different places.  He ate well.  He did not attach himself to me like Velcro but felt safe enough to be very independent.  He was happy.  He made others happy.  He did it!

While saying goodbye to Michelle and Gibi and her family, they told him that they wanted him to come back and see them soon.  He replied, "Maybe I'll come back ... when I'm not so tired."

When she heard him say that, Gibi pulled me aside to say, "Chris, I think he knows".  I'd been thinking the same thing, although "knows" is a hard-to-define word in this context.

On the flight home, he turned to me at one point and asked if he was going to have any more blood tests.  I said, "I think so". 

"Because my blood is sick?"

"Yes".

"But I don't like blood tests".

"I know, but you're handling them pretty well now."

Nod.  End of conversation.

Peter's global family grows

Before we left Kolkata for home, we met 3 of my sponsored children through Children International.
I started sponsoring Maria Kanji when she was 4n while we were in the process of adopting Leo. She is now 30 with daughters aged 14 and 10. Maria exemplifies the adage that "when you educate a girl, you educate a family". Maria's #1 focus is her daughters' education. She and husband Paban were able to step out of grinding poverty in the inner-city bustee where they grew up. Their daughters will no doubt live with greater opportunity and security once they are grown.

We took Maria and family to breakfast at the legendary Flury's on Park St. in Kolkata. After a delicious English-style breakfast, we enjoyed yummy pastries before going our separate ways. Who knew you could get a decent chocolate croissant in Kolkata?

Peter really enjoyed getting to know "big sister" Maria, who had already met Leo and Annie, and playing Dada to Sweety and Riya.

We met my newest sponsored child, 5-year-old Moutushi, at Children International's Kolkata office. She and her mother had come in to the city for the first time from their remote hamlet south of Kolkata.
Moutushi's father is a day-laborer, doing physically punishing road work when he can get it. He is blind in one eye and terrified that the road crew bosses will find out and declare him unfit for work. Moutushi's mother Poornima stays home to care for her and her baby sister.

Before seeing Moutushi, we had tea and extended conversation with the director of the Kolkata program, who turned out to be an adoptive parent! Peter was exhausted and slept soundly for a long time.

When Moutushi and her mother entered, they bowed low to touch our feet as a sign of respect. Moutushi's family belongs to the Santhal tribe, the same as our daughter Annie. I chose Moutushi because she reminded me of Annie ... and in person, the resemblance in appearance and personality was simply astonishing.
I couldn't wait to give Moutushi her gifts. She loved her brown Barbie doll, her kaleidoscope, her Dora the Explorer doll, her Dora underpants, and her Dora coloring book. But what made her jump up and down and giggle was her pink Dora backpack. She put it on immediately and wouldn't take it off even when she went to the bathroom.

After we enjoyed Moutushi's antics for a while, the staff ushered in my former sponsored child Partho. I wasn't sure they'd be able to find him, so when I caught sight of his face I was absolutely blown away. At 25, his liquid brown eyes and sweet smile were exactly as I remembered.

I last saw Partho in 1998 when he was 11. On that visit, I went to his tiny rural village and met his family. Walking along a "berm" between paddy fields, I slipped slightly. Partho grabbed my elbow exclaiming "Aunty, Aunty!". For the rest of the visit he never let go of my arm.

I continued sponsoring Partho until he finished high school and -- amazingly -- entered university. I helped to buy his books and the other things he needed for college. At that point, I lost track of him.

I've always had a special place in my heart for Partho. His semi-annual letters were full of questions and wishes for his brothers Leo and Peter, and his sister Annie. He always ended with "I love you, Aunty".

As soon as we saw each other, Partho and I crushed each other in a big hug.

"Ohhh! Partho! My college graduate!"

"Aunty, oh, Aunty ... no graduate. My father, he died in first term and so I go home to take care of family".

Partho's eyes filled with tears as he told me this. I held him close and whispered "Oh, Partha, I'm so sorry, so sorry ... but I"m so proud of you".

It turned out that Partho's father had been electrocuted in front of his eyes in a freak accident while he was on a brief visit home. Partho tried to revive him, but there was no hope.

Partho took over his father's role as a subsistence farmer to support his family. He said his dream was to complete his degree one day, or start a business of his own, but for now he had taken a part time job selling life insurance on a commission-only basis. Had he received his degree, he would have been eligible for a salaried position.

Partho pulled out a small bunch of pink roses for me, plucked from his own garden. He had also made beautiful cards for Leo, Annie and Peter. I tucked $100 in rupees into his shirt pocket. He kept a tight hold on my hand while I pulled out my Blackberry and showed him photos of himself as a child and teen. He remembered every detail of every letter I'd ever written him, and asked lots of questions to catch up on the latest family news. It was an extraordinary connection. I felt as if the 12 years since our last visit were only seconds.

During all of this, a reporter and photographer captured everything that was going on. I am being featured in the spring issue of Children International's subscriber magazine. Maria and Partho were both interviewed for the article, and I wrote thousands of words to answer a long list of questions before I left for India. It's an honor to help Children International in any way I can.

We all piled into cars and went to a Pizza Hut near Park Street for a celebratory lunch. I ordered pitchers of Pepsi and 7-Up, several plates of garlic bread, and 4 large pizzas. Moutushi wasn't thrilled with her first taste of soda. The bubbles made her tongue sting! Moutushi's lovely young mother had tasted soda once before, and she enjoyed her glass.

Most everyone enjoyed the garlic bread. The vegetarian pizzas without Indian spices weren't a big hit, and Moutushi's poor mom obviously felt embarassed to not finish what was on her plate. When the chicken tikka masala pizzas came out, I whisked away her plate and put a slice of the spicier pizza on her new one. She seemed relieved when she recognized a familiar flavor.

After the pizza, I ordered ice cream all around. Moutushi and her mother ate theirs cautiously at first but then with great enjoyment. I sat next to Partho and enjoyed urging him to eat more just the way an Indian mother would. At one point, I teasingly fed him a piece of chicken from my plate. Later, he got my attention and fed me a bite of ice cream from his bowl. These little gestures are iconic of the intimacy between mother and child in India.

Partho and I reminisced together, sang Bollywood songs, and talked about the past and future. He noticed the tattoo on my wrist and showed me his on the opposite wrist, whispering that it was the name of his high school girlfriend. But alas -- she was Christian, and a marriage was unacceptable to both families. He said he wanted a girl with a sentimental heart like his. He likes the Bollywood actress Preity Zinta, who has a cute "girl next door" persona.

Then it was time for us to go, literally. Our flight to Mumbai was in a few hours. Partho put his arm around me.

"Aunty, you come my house next time".

"Yes, Partho, I promise. Stay well, beta."

"Stay well, Aunty. And Aunty? I love you".

I kissed his forehead and put a hand on his head to bless him. We won't lose touch again; I now have his email address.

Sent from my Verizon Wireless BlackBerry

Victoria Ride

Peter sat up front with the driver during our Victoria (carriage) ride near the Victoria Memorial in Kolkata.

Sent from my Verizon Wireless BlackBerry