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Everyone knows that raising a child is hard. No one talks about the biggest reason why.

As some of you know, Leo was born with a skin condition: a giant congenital melanocytic nevus with satellites. That is, he was born with a single bumpy, hairy, dark brown mole that covered about 80% of his back and about twenty-five other moles, roughly between a dime and a quarter in size, on the rest of his body. Although congenital nevi are merely uncommon, giant ones are rare, estimated to occur only once in every 500,000 births.

Most of the time, the consequences are mostly cosmetic. The condition is associated with a slightly elevated risk throughout his lifetime of melanoma. There can be some other concerns, since, among other things, nevi lack sweat glands, so kids with even larger nevi than Leo's are sometimes at risk for overheating. He still has the satellites, and, like most of us, he gets new, smaller moles from time to time, but the giant nevus was removed from his back in a series of seven operations, the last one on his second birthday. (Happy Birthday, Leo!)

There's a support group for people with nevi and their families. The rarity of the condition makes the group relatively small, and you get to know people. There's a conference in Dallas every two years, and the next one is coming up in July. We're going, and we're taking Leo.

Sometimes, though, this rare condition has an even rarer complication called neurocutaneous melanosis (NCM). In this condition, pigment cells, sometimes cancerous (that is, melanoma), grow on the spinal cord, brain, or both. Symptoms can include seizures, hydrocephalus, and other things. Symptomatic NCM is a bad sign, although it is no longer regarded as an automatic death sentence. If NCM progresses, though, it is inevitably fatal, whether the pigment cells are technically melanoma or not.

Leo had an MRI as soon as he was old enough to tolerate general anesthesia, and it showed no signs of NCM. But not all kids and parents are that lucky. Riley died this afternoon at home, just a few days after his ninth birthday.

I had followed Riley's story, sometimes in tears. I hurt for his parents. The pain is just a little keener, though, because, clean MRI or no, we can't be completely sure that won't happen to Leo, and that we won't be the parents who have to find a way to live during and afterwards.

But then, really, who can?
lawnrrd: (Default)
Leo is home. The operation yesterday went well, although Leo lost a little more blood than the surgeon would have liked. For a while, we weren't sure if he'd have to stay overnight in the hospital for observation, but the blood test came back with a good enough result that they released him.

We took him back to the surgeon today for removal of the surgical drain and the dressing. Leo screamed bloody murder during the removal, although he was happy to go up and down on the elevator. His back looks great, too: the giant mole is all gone. He will of course have big scars from the incisions, but there's no way to tell now just how bad they will be.

He's uncomfortable. We have Tylenol with codeine syrup, as before, but it tastes really foul, and we can't get it into him. The one time we were able to, we had to pour a dose over a slice of leftover birthday cake and, in addition, put an M&M on each forkful.

Lauren and I are really getting on each others' nerves.
lawnrrd: (Default)

Note to self: The next time Lauren asks if we should have a combination neighborhood block party/Halloween party/birthday party for Leo, the answer is:

"NO! NO! NO!"

Cut for length and for pictures. )
lawnrrd: (spot)
Leo had surgery yesterday, inserting set of tissue expanders in his back. He's sleeping at the moment, but he's certainly been in more pain this time than after some of the prior operations. Lauren and I are very tired.

In Brief

Apr. 21st, 2006 01:07 pm
lawnrrd: (Default)
Leo is home and doing well.

I am at work and tired.

Lauren is exhausted, especially because our roommates' new puppy keeps waking her up by crying and barking in the wee hours.
lawnrrd: (spot)
Leo's other tissue expander somehow became infected last weekend. The surgeon saw him today (after having seen him on Easter Sunday) and has decided to operate first thing tomorrow morning to remove the tissue expanders early.

I'd go into more detail, but I'm very tired, and I have a lot of work to do.


Apr. 3rd, 2006 10:05 am
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Through a completely random coincindence, I spent most of last week at work assembling a patent application for a guy I went to high school with. When you consider that only thirty people each year graduated from my high school, you may understand why this is an even weirder coincidence. The application itself was a bear to write, not because it was especially complex, but because I had only just over a week to understand, write, revise, and file it.

Meanwhile, the guy is single and Jewish, so Lauren wants to fix him up with a bunch of people.

And on the day that I filed it, I found out that I have to do the same thing for another client, except this time I had only five days to put the thing together. I therefore worked a lot this weekend.

Lauren and I may be moving to Brooklyn. More on this later.

Leo's infection seems to be under control. He did get yet another cold this weekend, though. He's also been going through a whiny phase, which is incredibly annoying.

At this point, I will likely not be going to Frolicon, and that's incredibly annoying, too. Oh, well. There's a party here that same weekend that ought to be fun.

I need a nap. And I'm not going to get one.
lawnrrd: (Default)
I just got back from our appointment with Leo's surgeon. It appears that the tissue expander can stay put, barring changes in the situation such as are inevitable now that I've made this post and jinxed it. Tissue expansion will resume in two weeks.

In totally unrelated news, the night before last, I dreamed that a huge cockroach was flying right at me. In my dream, I swung my arm wildly to fend off the murderous insect. Unfortunately for Lauren, I also did so in real life.
lawnrrd: (spot)
I could really use a brief nap, lasting three or four days.

I had forgotten to mention that an urgent matter came up at work over the weekend, too. (Well, for work-related values of "urgent," anyway.) It had to do with some litigation-related insanity and required some technical expertise that no one else in the department seems to have. So I worked until about midnight last night, then showered and went to sleep on the sofa to avoid waking Lauren.

(Lauren has enormous trouble getting back to sleep if awakened, especially when stressed, and she's a very light sleeper. I have seen her wake up from the noise made by a cat walking across a wooden floor. She has not had a decent night's sleep in months and is at the end of her rope.)

My sacrifice was for naught, however, as Lauren woke up anyway and came to fetch me at about 1 AM. I went back to bed, and Lauren did not sleep for hours. I didn't sleep much, either, although I slept more than she did. At about 6:30, we got up to get Leo ready for the doctor.

The surgeon removed one or two stiches from Leo's back and slightly widened the hole through which pus had been draining. Leo did not enjoy that part. Some poking and squeezing, which Leo also did not enjoy, coaxed a little more fluid out of the hole. Lauren and I held him down on the table throughout this, and we did not enjoy it, either.

We still don't know if the tissue expander will have to be removed, although the doctor looked at the situation and said that the expander didn't have to be removed immediately. We had our regularly-scheduled visit planned for Wednesday afternoon, so we'll see what happens then. The main concern at this point is protecting the skin that covers the expander in question because, as the surgeon put it, "that's Leo's future."
lawnrrd: (spot)
One of Leo's tissue expanders may have to be removed prematurely. We are all kinds of upset.
Cut for the easily disgusted. )
So, we have an appointment with the surgeon first thing in the morning. He says that there's only about a 20% chance that we can save the expander, but that's better than no chance. The problem, he explains, is that bacteria have come in contact with the tissue expanders. Because the expanders are foreign objects inserted into our child, they have no blood supply, which means that the antibiotics have no way to get to them.

Unfortunately, removing the expander would mean subjecting Leo to procedures over and above what we had expected:
  1. One to remove the infected tissue expander;
  2. One to remove the remaining expander and to excise part of the giant nevus;
  3. One to insert another set of expanders; and
  4. One ring to rule them all and in the darkness bind them to remove the last set of expanders and excise the last of the giant nevus.
We had, of course, been expecting operation number 2 on the above list, but we expected that would be the last one. I'm upset and, as usual, tired. Lauren's taking it very hard, especially in combination with the seeming collapse of our grand scheme to get an apartment. But that's a nightmare for another discussion.

1I like Leo's surgeon a good deal, but he's one of those surgeons who is so utterly focused on surgical matters that other things—such as, for instance, when he's actually going to perform the surgery—often get by him. He's also very much a WASP, with more middle names than might be considered strictly necessary.

He and I are are both Yale grads, and we seem to have bonded over that, but we come from Yales of different eras. He went to Yale at a time when they limited the number of Jews they'd admit because they were afraid we'd take over. I went to Yale at a time when they were glad to have all the Jews they could find because we were the only thing keeping the Asians from taking over.
lawnrrd: (gah)
Leo's surgery last week went swimmingly. He was, as you might expect, quite uncomfortable the night after the surgery, but they pumped him so full of morphine that he had an estimated street value of $3,000, and that got him (and me—I spent the night with him in the hospital while Lauren partied like it was 1999 went home and got some badly-needed rest) through the night.

A day later, though, his day in the hospital meant merely that he was a day behind in yanking books from the shelves and dumping cereal boxes onto the kitchen floor. He's probably caught up by now, but he seems unwilling to take any chances. He has also eagerly resumed his role as disease vector, sharing a nasty cold with both mommy and daddy. Thanks, kid.

In other news, my father was hospitalized late last week. For those of you keeping score at home, my father managed to get Alzheimer's in his early 60s, and is now almost 67. While he and my stepmother were babysitting for my stepbrother, he fell down and suffered some other symptoms. At the time, they thought that it might be a stroke, and they rushed him to the hospital. He turned out to have a bacterial infection that had further screwed up his system, including his balance and memory.

I have not been hospitalized recently, but at this rate, I'm concerned that my "cold" might actually be bubonic avian SARS or something. Wish me luck.

Leo Update

Feb. 25th, 2006 05:25 pm
lawnrrd: (spot)
Leo's fourth operation has just been scheduled. It will be Tuesday, February 28, which is three days from now. We learned this two days ago.

Leo's plastic surgeon has a taste for surprises, it seems.
lawnrrd: (Default)
The good news is that Leo came home on Wednesday, and is doing well. He's certainly in a lot less pain than in any of the previous operations. Although the hospital had him on morphine overnight, we've been able to give him Tylenol and Motrin only, and he's been mostly comfortable. He also seems glad to have the expanders out of his back, and I certainly don't blame him.

The better news is that after a few days in ninth place in voting for the Eight Hunks of Hanukkah, I am back in eighth place. Since only the top eight contestants qualify, eighth place is a big improvement over ninth place.

The bad news is that Lauren and I both qualify as disaster areas. We have both been badly stressed for a while. We're both exhausted, especially Lauren, who hasn't had a good night's sleep in, oh, about fifteen months.

The worse news is that I'm only two votes ahead of the guy in ninth place, and that cat is still twelve votes ahead of me. Folks, cats are warm, fuzzy, and darned cute. But they aren't hunks.
lawnrrd: (spot)
Leo had his third operation today.

This was not what we had expected. His last procedure took place on September 15, during which four tissue expanders were inserted under parts of his back that weren't covered by the mole. At the time, we were told that expansion would take about three months, meaning that the next procedure would take place in mid-December.

About two weeks ago, when Lauren took Leo to the surgeon for a saline injection, the surgeon asked us to make an appointment for surgery on November 15. Lauren pointed out that this would be only two months after the previous operation, but the doctor said that he thought Leo was ready.

Then, four days ago, on Friday morning, the surgeon called us at home. He had been lying in bed all night, he said, "thinking of his favorite patient." Leo's expanders were close to perfect, he said, and he didn't want to risk Leo's bruising or otherwise irritating the skin. "Schedule the surgery for November eighth," he said. We were surprised and anxious, but we did as we were told.

The operation took about two and a half hours. The surgeon removed all four expanders and most of the mole. He said afterwards that everything had gone very well.

Leo is in the hospital tonight with Lauren. (Lauren stays with him in these circumstances because, when Leo gets really upset, he wants his mommy, not me. I go home and sleep so at least one of us can be rested.) We were told that this operation should be a lot less painful than the last one, and Leo seems a lot more comfortable than he did last time. He comes home tomorrow.

The next procedure, we have been told, will take place three to six months from now, when Leo will get his second (and hopefully final) set of tissue expanders. That will in turn be followed by his fifth and final operation, the removal of the last of the giant mole.

Lauren and I are exhausted, physically, mentally, and emotionally. The crises continue.
lawnrrd: (spot)
I believe that I forgot to mention it beforehand, but Leo had surgery yesterday. For those of you who want to skip to the end, he's home and generally uncomfortable, but not so uncomfortable that he can't crawl around the apartment.

The not-especially-gory details )


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