Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Thursday, October 19, 2006

Looking Forward and the Ghosts in My Head

Mental instability can take many forms, and with Halloween rapidly approaching, I'm going to admit that I have ghosts that live in my head.

Steven is doing well, and part of him doing well is that I'm just starting to take my eyes off the ground immediately in front of my feet and beginning to look forward, just a little.

Looking ahead scares me. The ghosts in my head work overtime to figure out what I can do to try to keep Steven well. I don't understand how he got so sick and I don't understand why he's doing well now. I don't understand why some kids suffer and some kids get better and some kids die.

I have this deep-seated fear that if I let my guard down, if I start to plan for his future, if I forget where we've been, if I pay inadequate homage to the friends we've lost along the way, if I'm not grateful enough for what we've been given, if I break my routine, the cancer will come back.

Life was always complicated, now it's more so.

Growth, Thyroid and Growth Hormone

Steven is twelve, and he's growing, which is a good thing. One of the curses of being a childhood cancer survivor is that no puubertal change goes unnoticed or unmeasured.

We are informed by St. Jude that Steven is in his puubertal growth spurt, but that his growth over the five months between our March visit and our visit last August is not adequate to match the increase in his bone age x-ray.

Another outcome of Steven's St. Jude visit in August was that his irradiated thyroid is producing insufficient thyroid hormone, so he is now taking synthroid. One of the big hopes is that the synthroid will stimulate his growth. When we return in February, if we see a similar jump in bone age that is not accompanied by a correspondent increase in height, the likelihood is that they will recommend daily growth hormone injections.

Paying for growth hormone is a problem for many insurance companies, and the costs are high. The ghosts in my head whisper that there is a possibility that growth hormone could cause his cancer to grow again.

Hair (or lack of it)

The Hair Club for Kids will continue to provide hair replacement services for Steven until he's 18. If he wanted to continue their service after that, it would cost approximately $400/month. A typical hair transplant would pay for itself in two years time.

I contacted a hair replacement doctor in Los Angeles to discuss options and he scheduled us for a visit.

I pulled Steven out of school and we trekked up to Los Angeles for the day. Dr. Rassman was very nice. He evaluated Steven and his finding was that at least right now, Steven is not a candidate due to how thin and fine his hair is in the donor areas. He said bring him back in 2 years and he'll re-evalate.

I also asked about Steven's situation on another website, and they kindly created a page for Steven, to solicit opinions on his case.


Steven after the second mole was removed

Steven had a mole on the top of his right hand that everybody found "questionable". We had it removed in July.

Steven has a few major phobias about certain medical procedures. Some of them started at age two.

Needles are one, but he's got some kind of major thing about anything on his skin, he won't permit any bandaids, this goes beyond adhesives and extends to temporary tattoos, face painting and other things that most kids enjoy. Wristbands also. And stitches.

He was shocked at the dermatologist's office when they prepared to remove the mole on the spot after they'd looked at it. He was very apprehensive, and we'd never seen this dermatologist before, and there's always kind of a "training period" we go through when a new doctor meets Steven.

Steven did pretty well while they used something like a cookie cutter to remove the mole, but when they tried to stitch it, he flipped out.

When Steven was four, we were climbing the stairs out of the dolphin stadium at Sea World, and Steven's feet slipped off the concrete step and he went down, hitting his forehead on the edge of the step above him.

It required stitches, and at the hospital they laced him onto a board the full length of his body with something like a corset wrapped around it, he was laced up from his neck down to his toes.

An orderly who looked like he could have been moonlighting as a bar bouncer held Steven's head while the doctor stitched him. When we unlaced him, his terror and fear was compounded by the embarassment of having lost control of his bladder during the stitching.

He managed to hold still enough to allow the dermatologist to take a single stitch, but after we left we sat in the waiting room for 20 minutes before Steven was composed enough to walk to the car.

At Memphis in August, his oncologist reiterated that I need to take him in for regular visits to the dermatologist, kids that have been through cancer treatments are more likely to develop secondary cancers, including skin cancers.

So I took him back in September for a full body exam. The dermatologist looked at his mole, which had shown some abnormalities (dysplasia) but was determined not to be cancer.

There was still some mole left, so they decided to remove it again with a wider margin this time.

Steven did not take the news well, no sound but lots of tears. It was a different doctor this time.

The mole came off, but due to the severity of Steven's anxiety, they only took two stitches instead of three.

After both mole procedures, Doug and I snuck into Steven's room while he was asleep and removed his stitches ourselves without waking him up. I really wish they could put him out with gas for these short procedures.

No dysplasia the second time, I'm praying for no more funny-looking moles, sometimes even the small things are really hard to deal with.

The Limb Length Saga

CIGNA denied our appeal regarding the $500 shoes they promised in advance to pay for and I'm getting threatening letters from the orthopedic place because I haven't paid the $400 they are saying I owe. I'm trying to refrain from responding with "when hell freezes over". We all choose our battles and this may well be the hill I choose to die on.

The time is rapidly approaching when we are going to have to decide what to do about Steven's limb length discrepancy. We can decide to stop the growth in his longer leg at a time calculated to allow his shorter leg to catch up (this is an inexact science), or we can lengthen his shorter leg.

Steven's bone age was measured to be 12 years old when we were in Memphis in August. Boys grow to a bone age of 16, which may or may not correlate with their chronological age.

The discrepancy in the length of Steven's legs is approximately two inches. If we were to decide to stop the growth in the longer leg, we'd have to do it most likely within the next 6-9 months. It involves a minor surgery, where the growth plates (cartilage near the knee) are snipped, then he wears a removable cast on his leg for 6 weeks and crutches.

According to St. Jude, Steven should grow to be 5'8" or so, although his orthopedist here in San Diego thinks this may be optimistic. If we do the shortening, he will lose 2 inches.

The lengthening has the advantage that the procedure doesn't need to be timed, and the length added can be controlled more precisely. But the procedure sounds awful.

His femur would be broken, probably we wouldn't do the lower leg. An external fixator (pictured above) would be attached and the bone would be allowed to start to heal, then we would crank the two sides apart.

This procedure would continue until the desired length was achieved, most likely 6-9 months.

I cringe to imagine putting him through another procedure, we're trying to figure out if those two inches of height are worth it.


Steven and Sean have acquired $4000 worth of collective metal in their mouths. Sean calls his a "second set of teeth", it is to prevent his tongue from thrusting into his teeth. Steven's is a palate expander, to hopefully make room for some of the teeth that are threatening to emerge but don't have room.

Steven's doctors have been recommending to me for months that he needs the palate expander, but I was unwilling to have one put it in until he made it to the 6-month St. Jude followup mark.

Metal in his mouth causes artifacts on his MRI, which obscure some of the areas of his brain that need to be monitored closely for tumor recurrence.

If the braces remain in his mouth, then each MRI would be followed up by a CT scan. I have a paranoia about routine CT scans in kids because of the possibility of secondary cancers. The doctors tell me the risk is relatively low, but they also tell me how much more likely Steven is to get cancer after having had radiation and chemo. The ghosts in my head tells me that given our family history, the dice are stacked against us if we try to play the odds.

Finding an orthodontist who understands the issues I'm concerned about wasn't an easy task, but we managed to find one who has agreed to remove Steven's appliances prior to any scans and put them back in after.

Everyday Life

My parents had their anniversary last Friday (the 13th), lots of family and friends from out of town, it was fun, but helping my sister Janet to plan that party has been keeping me very busy.

Sean didn't get his fill of baseball last spring, so he's playing baseball again in the Little League's Fall program, called Fall Ball.

Steven had a desire to play also, but he's never played before and for many reasons, active sports really aren't his strong suit.

I contacted our local Little League and explained Steven's situation and asked if they had any suggestions and they offered him a position on Sean's team.

So, Steven's playing with the 9-year olds and it seems like it's working out. Sean has been pitching and he's loving it. This is the first year the kids pitch, previously the coach pitched or they use a pitching machine.

Both kids are liking school. Later I'll post photos.

It's that time of the year again, when the polar bears congregate in Churchill, waiting for the Hudson Bay to freeze over so they can head out to the ice to hunt ringed seals.

The live Polar Bear Cam came online this week, so we're able to see what we're missing, you can see the polar bears live between 9 am and 5 pm eastern time on Steven's site, or on National Geographic's Wildcam (both require Real Player).

- Kathleen


Anonymous Brenda said...



October 30, 2006 10:53 PM  

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