THE VIRGINIAN-PILOT
Copyright (c) 1996, Landmark Communications, Inc.
DATE: Saturday, October 26, 1996 TAG: 9610260220
SECTION: FRONT PAGE: A1 EDITION: FINAL
SERIES: SICKLE CELL DISEASE: QUEST FOR A CURE
Since 17-year-old Christopher Smith had a bone marrow transplant on
Sept. 18 at St. Jude's Children's Research Hospital in Memphis to cure
his sickle cell disease, he and his mother have been waiting. Waiting
to learn if the marrow in Christopher's bones is his own or the
donor's - his 10-year-old sister Christina. Waiting to see if he
develops host-vs.-graft disease, a potentially deadly complication.
Waiting until they can leave the hospital.
SOURCE: BY DEBRA GORDON, STAFF WRITER
LENGTH: 215 lines
Norma Smith has never been an idle person. At home, her thin frame was always moving - wiping counters, cooking chicken, completing the myriad of chores and errands a home with four children requires. When she sat, it was usually to sew a pair of pants, mend a shirt or knit.
In Memphis, Norma stopped moving. For two months, she's sat and stared. At the television. At Christopher playing endless games of Nintendo. Out the window into the burnished gold of an early autumn she was missing.
She couldn't concentrate long enough to read. Couldn't even pick up her knitting needles. About the only thing she could do was write in a small journal. Talking to myself, she called it.
The writing was simple, often just a description of her day. But as the days dragged on, the journal revealed something more - the transformation of a 33-year-old housewife into a self-assured medical advocate. A best friend to her 17-year-old son. A comfort to other families on the bone marrow unit. A support - however distant - to her husband at home.
A woman whose thin, willowy frame now hid a core of steel.
Sept. 28: 10 days post-transplant.
Well, yesterday when they were gonna leave, I started to cry. So today I promised myself I would control myself better. This time they are leaving for real.
Norma would miss Christina most, she thought as she watched the family's van pull out of the hospital parking lot. The two weeks they'd spent in Memphis before the rest of the family arrived, time without the younger children interfering, without any medical crises from Christopher, had been a gift.
As a going-away present, she'd spent the last two days feverishly re-weaving Christina's hair, braiding while the girl slept, watched TV or played Nintendo. It was important to do this right - the plaits would have to last until Christmas, when, hopefully, the family would be together again in Virginia Beach.
Now, for the first time in her life, she was alone. Just her, an empty hotel room and a sick 17-year-old lying in a hospital bed waiting to see if his sister's bone marrow was growing in his body.
Sept. 30: 12 days post-transplant.
Chris will be shocked to see me so early. I can't sleep long when I'm alone. Only when my honey is here did I have such a peaceful, sound sleep that is comforting and long and deep.
Sleep. Norma craved it, dreamed about it - but just couldn't do it. Not alone. Not by herself in that suddenly too-big hotel room.
With her husband, Roosevelt, and the children gone, it seemed the only place she could sleep was in the chair next to Christopher's bed.
She spent most of her time at the hospital, partly to stay by Christopher's side in case he got sick; partly because, without a car, it was so difficult to get back and forth. With Roosevelt gone, so, too, was her transportation. Now she depended on the St. Jude's van that made the rounds of the local hotels where patients and their families stayed, or cabs. And at $7 a pop, cabs were a luxury she could ill afford.
She tried not to think about money, but it was hard. She had always managed the family's funds. Now the cable had been cut off, the newspaper canceled, and Roosevelt was calling to ask what groceries he should buy. And the man was so stubborn, she knew he'd be in the poorhouse before he'd ask anyone for help.
But a car . . . a car would give her the freedom to get to the store, to take breaks from the long, long days at the hospital, days filled with worry and anxiety.
True, the transplant was over, but the hard part had just begun. Christopher's immune system had been destroyed by the chemotherapy that wiped out his own bone marrow before the transplant, leaving him vulnerable to every kind of infection.
So far he'd been doing well. So well that the doctors were talking about letting him leave the hospital for a few days.
I'm happy, but scared. . . . Christopher has let me know that he is concerned about leaving. He said this morning, ``You know, it is flu season.'' This brings tears to my eyes because every year except last year he went into the hospital during flu season with a fever or something . . . I pray that he stays safe. I know that he's afraid inside of what's to come and so am I.
Oct. 5: 17 days post-transplant.
We should be out of here by afternoon! So we will have a little time before we have to return to the hospital.
Christopher had been waiting two days for his release from the hospital. He would only get as far as the Holiday Inn, but the thought of room service kept him going. He wouldn't eat any hospital food. I'll eat when we get to the hotel, he kept saying.
But after a long day of waiting for test results and yet another blood platelet transfusion, it was nearly 1 a.m. by the time Christopher and Norma arrived at the hotel. The restaurant was closed.
Then the bubble burst.
Mommy, Christopher said. I have a fever.
It was to be the first of many. Over the next two weeks, Christopher spiked several fevers, and despite numerous tests, doctors couldn't figure out what was wrong.
Other weird symptoms surfaced. A rash on his face. Severe headaches. One day, he complained that his heart hurt. Not his chest, said this child who was all-too-familiar with pain. But his heart. A `` kind of bland pain,'' he said.
EEGs, X-rays, CAT scans, blood tests - showed nothing. The only thing of any concern doctors picked up was that Christopher probably had a touch of CMV - cytomegalovirus, a herpes-type virus that can cause blindness or stomach problems.
The doctors talked around Norma and she listened.
I know a lot more than they think and I'm scared. I'm gonna pray real hard that we get past this point.
Even as Norma prayed for Christopher, she added another name in her prayers - 4-year-old Holly, a little girl from western Virginia. She'd had a bone-marrow transplant at St. Jude's just before Christopher's to cure her leukemia, and had developed host-vs.-graft disease. Now, she was on a ventilator in the intensive care unit.
Over the past two months, Norma had forged a strong friendship with Holly's parents, Jim and Karen. When other parents ignored the couple, as if afraid to ``catch'' their bad luck with Holly, Norma silently hugged them.
The two families shared a pizza one night in Christopher's room. Over Cokes, pepperoni pies and a movie, they tried, for one night, to bring a semblance of normalcy to the antiseptic atmosphere.
Finally, the day of the bone-marrow aspiration, delayed because of Christopher's health problems, arrived.
October 14. 26 days post-transplant.
Norma insisted on watching the aspiration, her curiosity overcoming her fear.
They get a big needle the size of a metal skewer. Pushing down firmly, I hear the crunch of the bone, then (the doctor) twists it several times, pulls it out and gives a small amount of bone to the nurse. She reinserts the needle, pulls out the center clips on the syringe and draws out blood and it's over.
It would be several days before the results are back.
In the meantime, there was Christina to worry about. Norma's friend called to tell her that the girl's back, where doctors took out the bone marrow, was swollen. She'd come home from school throwing up and feverish.
The St. Jude bone marrow specialist nurse, Robbi Norvell, a transplant from Norfolk's Children's Hospital of The King's Daughters, called Christina's pediatrician in Virginia Beach for Norma and scheduled the girl an appointment.
But it was frustrating for Norma to be 1,000 miles away from her sick daughter.
And Roosevelt was so tired, snatching a few hours of sleep here and there, that she hesitated to call him to take Christina to the doctor.
So she waited. It was a job she was getting pretty good at.
Oct. 17, 29 days post-transplant.
90/10. The results of Christopher's bone marrow aspiration showed that 90 percent of the marrow was from Christina and 10 percent from Christopher. That was good, the doctors reassured Norma. Ideally, the percentage of Christina's marrow would increase to 100 percent soon.
But, Norma knew, there was still the risk that things would go the other way - that Christopher's marrow would overtake his sister's and the whole thing would be a failure.
It was a worry she kept to herself, as she kept most of her worries. Even from Roosevelt.
And that was the problem.
The time apart was taking a toll. Where they were used to long talks about everything, now their time was limited by the clicking meter of long-distance.
Knowing how stressed he already was, Norma hated to bother him with every little fever, every rash. That frustrated Roosevelt, who was learning about his son's condition third-hand from relatives, or even from TV news.
Norma understood.
I know this is really hard for him, because before we left he told me that he hopes Christopher doesn't resent his having to work instead of being with him. . . . I told him not to beat himself up for things beyond his control. Chris knows how much he loves him.
Roosevelt's frustration was exacerbated by his exhaustion. Since he worked nights at Stihl Inc., he rarely got more than two or three hours sleep before the children came home from school or 4-year-old Aaron woke up.
There were bright spots - the special assembly during which students at Rosemont Elementary School honored Christina for donating her bone marrow. The hugs and kisses he received every night from Aaron. The independence the children showed when they hung the Halloween decorations themselves.
But the problems were there. One day he was late picking the children up from a relative's house. Seven-year-old Ashlee panicked, thinking Roosevelt had disappeared.
Last week was the worst. Saturday, the dryer broke. Monday, the dog ran away. Wednesday, the refrigerator fell over.
Yes, fell over. Luckily, Christina and Ashlee, who'd been hanging on it, weren't hurt.
But the week's worth of meals Roosevelt had spent Saturday fixing were ruined.
``I just can't imagine a worse week than this,'' he said Thursday, rubbing his face wearily. ``What else could go wrong?''
For Norma, though, the week had been good. Friday, Christopher was officially released from the bone-marrow unit. He could leave the hospital.
It meant daily trips back to St. Jude's, spending the day in the clinic waiting for tests and platelet transfusions. He couldn't be around people, couldn't even see a movie because of the risk of infection.
But at least he could sleep in a hotel room instead of a hospital bed. Order room service. Take walks outside.
And Norma, alone no longer, could get a good night's sleep in a real bed. MEMO: A fund has been set up to help the Smith family meet expenses.
Contributions may be made to: the Christopher Smith Relief Fund, c/o
Virginia Beach Federal Savings Bank, 230 N. Lynnhaven Road, Virginia
Beach 23452, or at any Virgina Beach Federal Savings Bank.
You may write Christopher c/o Holiday Inn Midtown, 1837 Union Ave.,
Memphis, Tenn. 38104. ILLUSTRATION: ERIK CAMPOS photos
Norma Smith maintains her hospital vigil in Memphis with son
Christopher, enduing a month of worrying, waiting and praying.
BILL TIERNAN
The Virginian-Pilot
Roosevelt Smith gives his son Ashlee a haircut as daughter Christina
irons her jeans in preparation for school in Virginia Beach. Smith
cares for three children at home while his wife, Norma, is in
Memphis with their ailing son, Christopher.
Christopher Smith: The wait.
KEYWORDS: SICKLE CELL BONE MARROW TRANSPLANT by CNB