My Wish

Peter & buddies at SPICE Indian Heritage Camp in June

We leave on Monday the 5th of September for Peter's Make-a-Wish trip -- me, Leo, Annie and Peter.  Carl, as usual, won't be coming.  His loss.  The whole trip is a dream come true.  They take us to and from the airport by limo, we get a rental car while we're there, we stay in a special Make-a-Wish village, we get six days of amusement park tickets and spending money for food and souvenirs.  In the village, there is ice cream 24 hours a day, a free games arcade, a water park, and all sorts of other amusements.  Some kids are too sick to go out to the big parks.  We stay in a little cottage with kitchen, laundry room, and everything else we could need.  We'll eat breakfasts and most dinners in the dining room there.  Medical care is available around the clock, and the kids are treated like celebrities.  When we wear our Make-a-Wish t-shirts and buttons to the parks, we'll get VIP treatment.  As it is there will be hardly any lines, but we may even get to go to the head of those. 

"Mom!  No more pictures!"

So, Tuesday will be the Magic Kingdom; Wednesday, Animal Kingdom; Thursday, Disney Studios; Friday, Universal Islands of Adventure (The Wizarding World of Harry Potter!!!), Saturday, Universal Studios; and Sunday, Sea World.  I've gone online and creating touring plans based on the kids' ages and interests and the desire to keep days not too strenuous.  We're not going to get up at the crack of dawn and try to get to the parks before they open.  We're just going to do the things the kids want to do, and then we can spend time at the village.  Peter will be hard to get out of that arcade!  Leo and Annie want to hang out in the bar.  Works for me.

The only thing I totally forgot about -- until yesterday -- was Peter's low platelet count.  He still seems pretty well, so I'm guessing his white count and hemoglobin are still on the high side of low.  But his platelets have never been higher than 45 during the past 3 1/2 years.  The latest reading (in late May) was 28.  Spontaneous bleeds (with no outside forces) are likely when platelets go under 10.  He went down to 14 in late February but recovered into the high 30s and low 40s thereafter.  But the platelets started heading down again within a few weeks.  Peter LOVES roller coasters and other "scary" rides that drop him long distances, throw him around, and turn him upside down.  So do Leo and Annie.  So all they talk about are the many, many "violent" rides in each park and how they're going to do each one of them 3 times.

Annie, Leo and Peter playing "Indian Idol" judges at SPICE

So I was standing in the shower yesterday when suddenly my blood ran cold.  All those g-forces, the shaking and rolling, the acceleration and deceleration ... for someone who is susceptible to a brain bleed, isn't that dangerous?  It didn't take long to find out that yes, it is very dangerous.  If we were trying to hold on for a transplant we wouldn't even let him ride his bike, much less take some of the biggest, scariest rides on the planet.  The risk is that when his brain sloshes around inside his skull, blood vessels will rupture and bleed, leading to a condition similar to shaken baby syndrome.  He might not have symptoms right away, but later in the day or at night he could get a really bad headache, nausea, dizziness, seizures, lethargy ... and that would mean that his brain was under pressure from all the blood, and his condition would be very grave.

Peter with Louisa and baby Aleiyah

I've been emailing with a special advisor, an expert pediatric hematologist who is in the process of adopting a little boy from India.  I met her on the Indian adoption listserv where I've been hanging out for 15+ years now.  She has already been incredibly helpful to me with her medical advice but even more so by validating and supporting my choices.  She tells me I'm doing a good job.  I really need to hear that!

Her practical advice fits with my own inclinations, which is to take Peter and let him do whatever he wants, but be ready to make decisions if the need should arise.  Do I want a total DNR (do not resuscitate) or a selective DNR?  Would I allow his skull to be tapped to relieve pressure?  How about surgery to remove a piece of his skull?  If he can't breathe on his own, do I want him intubated?  If he is doing OK and then "codes", do I want them to "beat on him" and use the paddles in case they can "bring him back" whole?

Sparklers! Peter's favorite part of SPICE!

Of course I can't really answer these questions, except to say that I will try to make the best choices I can at the time.  It would help me so much if Peter's dad would be involved with this, so that I didn't have to own all the consequences by myself.  (Did I let him go to soon? Did I wait too long and let him suffer too much?)  Thankfully, my parents will be with me on the phone no matter what happens, and they are very, very wise.  They will help me when the time comes.

This trip is suddenly terrifying.  What if he seems a little dizzy coming off a ride?  What if Annie tells me he bumped his head?  What if he says he's got a headache?  What if he feels queasy?  And how will I sleep at night without checking him constantly, since any symptoms of brain trauma might well show up then?  I've spoken to Leo and Annie about this, and they absolutely, positively don't want to deal with it.  Peter is very normal at the moment and "Mom always expects the worst and goes overboard."  Peter's dad says the same thing.  Apparently by even bringing up these possibilities, I mark myself as a hysteric.  Believe me, the most hysterical thing I've done through all of this is cry quietly in my own room and tap out these messages.

Peter with Annie and Harry

I do not expect the worst.  I expect to come home with a happy and healthy Peter, and hundreds of great photographs.  But I must, I MUST at least PREPARE myself for the worst.  If he should have a bleed on our trip, I have to swing into action without falling apart.  I'll have Leo and Annie to think about too, not just Peter.  And I won't be at home, where friends and neighbors can steady me. 

My correspondent and another close doctor friend have suggested that Peter should get an infusion of packed platelets before he goes to Florida.  I haven't planned on that, but it is certainly do-able.  The only thing is, infused platelets only last 3-4 days.  If we gave him an infusion on Friday, most of it would be gone before he hit his first roller coaster.  So that's the long and the short of it.  I hope Peter and I will both see our wishes fulfilled, but if someone has to lose, let it be me.  I'd rather come home without him than tell him he can't do everything he wants to do now.