Make-a-What?

It's been a tough week on the Make-a-Wish front. Peter's hematologist, who approved the Make-a-Wish trip to Orlando 2 months ago without even THINKING about platelets, is now saying that he will not allow Peter to ride anything at all unless his platelets are at least 50.

He says the platelet infusion will only last 2 days but before riding anything the 2nd day, Peter needs to have blood counts done. Counts every 48 hours.

The M-a-W village is in Kissimmee, not far from the parks but a long way from the city of Orlando. The hospital that M-a-W recommends is Arnold Palmer Children's Hospital in Orlando. It sounds marvelous, but it's 25-30 miles from the M-a-W village, in the middle of the city, and we've been advised that the platelet infusion will take most of a day (including travel time, parking, registration, typing and matching, waiting for the platelets to be delivered, inserting the IV, waiting for the platelets to infuse, waiting to make sure there's no allergic reaction, and then driving back out to Kissimmee).

As for getting a blood count done, considering the location of the hospital, it will eat up at least half a day each time. He wants us to do it 3 times, plus spending a day getting a platelet infusion.

So the way it appears, we will be spending most of our time in Florida at a hospital. And yet:

WE DELIBERATELY CHOSE THE PATH WE ARE ON TO AVOID HOSPITALS!

We haven't even been in a doctor's office in months. Now Peter gets a trip of a lifetime and is expected to spend most of it at a hospital?

I burst into tears when talking with the nurse (the doc has been too busy to talk) and she said, "Well, tell him he can do everything else but he can't take rides. That's just the way it is." Right -- so YOU tell him, and then tell him again each time he sees a ride he can't go on. You explain to him why it's the way it is. He doesn't even understand that he's sick! He doesn't have any limitations here at home.

She said, "Lots of kids at Make-a-Wish are too sick to go to the parks. Everyone says that the village itself is a whole lot of fun. So, if it's going to bother him, just stay in the village." My problem? He's not too sick to go to the parks. He feels absolutely fine.

We could have chosen a different wish if the doc had raised any concern. We could have set expectations about avoiding exciting rides if the doc had raised any concern. As far as I can tell, no one looked at his chart and thought about him at all before approving the trip. In fact, had I not called started asking questions because I had developed concerns on my own, we would have gone to Orlando without any knowledge of risk.

Not only that -- Peter went to the 4th of July carnival in our town just a few weeks ago and rode rides all afternoon. No one ever told us any different. And, to be honest, he's had platelet levels <50 for at least 3.5 years, and we only found out about it last November. He's been to ... hmmm ... maybe 5 carnivals in that time?

I'm not trying to convince myself that this isn't a life-threatening danger, because it is. I've done the reading. He really could have a bleed in his brain. He really could die. So, hard as it will be, I'm willing to follow a modified plan:

-- Get the platelets on Sunday (though Peter will need Ativan as always to get through IV insertion and not rip the needle out of his arm).

-- Do rides on Monday and Tuesday.

-- No rides on Wednesday.

-- Platelets on Thursday (more sedative to get through the procedure ... never mind the screaming all the way there and the crying the night before).

-- Do rides on Friday and Saturday.

-- No rides on Sunday.

If I try to discuss this with Peter in advance, it'll just end in a screaming fit. But it doesn't matter whether we discuss it in advance or not. On Wednesday and Sunday, if we walk past a ride he wants to go on and I tell him again that he can't do it, he will beg and shriek and cry. He will be heartbroken. But I'm willing to gut it out to keep him reasonably safe. Two days with no rides and most of a day in the hospital. What I'm NOT willing to do is lose big parts of two additional days driving an hour each way to get blood counts done and then waiting for the results.

The doctor's nurse said, "Well, that's what the doctor says he wants, otherwise he's not going to let you go".

Oh really? He's not? Why didn't he speak up months ago? (I imagine he feels fairly panicked realizing -- once I brought the issue to the table -- that he approved the trip without thinking).

The thing is, the one thing that we have always emphasized to the doctor, and that's he's acknowledged and said he honored, is that we don't want Peter to live like a sick boy. That's why Peter goes to gym class. That's why he rides his bike. We chose this path for a reason. And we could have avoided tranquilizing him for platelets, spending most of a day in Florida getting more platelets (and tranquilizing him again) if there had been any foresight.

So now Peter gets "no, you can't do that, your blood is sick" and "sorry, we can't go to a park that day, you need platelets". And I'm the one who has to deliver that message, and hear him sob. He has bipolar disorder. He will rage and sob and scream and curse. He'll shriek "I HATE YOU!" to me over and over. He won't let anyone comfort him. His brother and sister will be embarrassed. It could go on for an hour, or even more. And not just once. It could happen several times.

We've told him over and over that this time, he can go on rides as much as he wants. I DIDN'T HAVE TO SAY THAT TO HIM! WHY DIDN'T SOMEBODY TELL ME??? WE DIDN'T HAVE TO BE DOING THIS!

We've chosen no interventions + palliative care for Peter when the time comes. In late May, his counts had unexpectedly gone up so much that the doc said we didn't need to see him for 3 or 4 months. If we were opting for aggressive treatment, we'd be in the doc's face. There's no way he would have approved the trip without bringing up the platelets issue.

We didn't have to plan this trip at all. Peter lives as a normal boy in his daily life. This trip will end up being all about being sick, about things he can't do. Yeah, there are lots of great things to do there, and yeah, he will enjoy some of them. But he will also cry a lot, and rage a lot. He shouldn't have to do that on his Make-a-Wish trip.

But ... I'm told that letting him ride a roller coaster is life-threatening. How can I ignore that? I love my son. Right now we don't see a particular limit on his time. He's most likely to die from an infection --eventually -- but right now his white count is pretty good. He could live for a year or two or three. So being dogmatic about this -- "he gets to do whatever he wants, damn the torpedos" feels like child abuse. He's happy in his life. He's not able to assess the risks. That's what a parent is for.

And then there's the idea of actually seeing him go up in the roller coaster and wondering if this will be his last day on earth. And blaming myself if it is. Because he will have gone to Florida as a healthy boy and come back dead, and it would have been entirely avoidable.

If you have a kid who is allergic to peanuts, you don't create a situation where you've promised him over and over that for once in his life, he can eat what everybody else does and then have to tell him -- while he sees everyone else eating peanuts -- that oops, he's sick, the doctor says he can't have them.

Though I am very torn up about all of this, I'm pretty comfortable with my revised plan. One day in the hospital for platelets, and probably we can get in some park time in the late afternoon and evening. Two "no ride" days. It will be hard, both for me and for Peter, but even that hinges on one critical factor.

Peter's insurance is Illinois Medicaid. He hasn't had any other insurance since we starting seeing our hematologist. We have trouble finding medical providers HERE IN ILLINOIS who will take Medicaid. Now what are the chances that Arnold Palmer Children's Hospital in Orlando will take Illinois Medicaid for a platelet infusion?

I have a call in to the hospital. I expect to hear from them tomorrow. I know they would take him into their E.R. if his condition was critical, but I can't imagine that they have ANY way to recover $$ from the state of Illinois for a pre-planned platelet infusion.

I can't avoid the question now and throw myself on their mercy later, because I have to know if we're going to get platelets or not. We can't go all the way to the hospital and be turned away.

I had a good cry in the ladies room at work this afternoon, and if we can't get platelets in Florida, tomorrow is going to be a pretty big washout. I am made of strong stuff but this just breaks me. Give a kid a chance to dream and then shatter it? Screw that.

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.

Smarter than we thought

Peter's need for insulin has been so low during the past 3 months that he's rarely had more than one injection a day.  We've been amazed at his consistent blood sugar readings from hour to hour and day to day.  And I'd started to notice a lot of missing food, and empty ice cream bowls in the sink.  Gosh, I thought, he's got to be sneaking food.  But it doesn't seem to be affecting his sugar.  What the heck could be going on?  We know Peter is genetically "different", but is this really possible?

Today Carl took Peter to the endocrinologist for a checkup and to put the final touches on his diabetes management plan for this school year.  Peter must have assumed that his secret wouldn't keep, because while waiting to be called he confided in Carl that he had been putting down erroneous readings in his log book.  (We've been letting him handle his testing on his own for some time now, as long as he calls out his readings to us while writing them down). 

This all began after our last appointment when the doctor spoke to Peter about the cheating he was obviously doing.  There was no other explanation for readings that went sky high between meals after giving him sufficient insulin to correct for any excess sugar and cover what he ate.  So Peter went undercover, chosing values in the 100-120 range seemingly randomly.  And then he ate exactly what he liked.  When Carl got home, he checked the memory on Peter's testing device and -- yeowch! -- there were many, many readings over 200. 

Peter is typically a really bad liar.  ("Where did you go Peter?  You didn't ask permission!"  "Not to 7-Eleven, Mom!")  But this time -- 60 IQ and all -- he created an incredibly believable remission from diabetes.  He heard the doctor telling me that some kids experience a "honeymoon" period after they are first treated with insulin, which can last up to a year.  Well, Peter's self-initiated honeymoon allowed him to eat a LOT of high carb foods.  No WONDER he's put on so much weight!

Now we're back to the original problem: cheating.  Twice this evening I've heard him rustling around in the kitchen, doing "nothing, Mom, just checking something."  The second time I heard him close the door of his room very, very softly.  I suspect surreptitious eating, but I'm loathe to burst in on him.  His bipolar medication gives him terrible carb cravings.  And, as a fellow sufferer who never met a sweet thing she didn't want, I am soooo sympathetic. 

If anyone has any brilliant ideas about keeping a compulsive eater with no self-discipline from packing in the carbs and packing on the pounds, I'd love to hear them.  So would my bathroom scale, my sore knees, my aching feet, and all the clothes in the closet that I can't fit into.