Struggling to be normal

Struggling to be normal

8-year-old endures countless treatments to build an immune system

Advertisement

Sunday, September 9, 2007

By RYAN ORI

of the Journal Star
A mention of chemotherapy draws a shrug from 8-year-old Sydnee Freeman. No big deal.

“Do I have to get out the pictures?” asks her mom, Kim.

Pulling out an album, Kim Freeman points to the photo of her daughter holding a trash can up to her face following a round of chemo that preceded a stem-cell transplant.

As Sydnee’s hair continues growing back, her painful memories begin to fade. Other than her hair, the only other daily reminder of her condition is a peripherally inserted central catheter (PICC line) that sticks out of her arm to accommodate continual intravenous treatments.

Loved ones and medical professionals monitor signs the transplant has placed health concerns permanently in the past.

“It can work very well,” Dr. Reggie Duerst, clinical director of the stem-cell transplant program at Children’s Memorial Hospital in Chicago, says of stem-cell transplants. “It’s just that because you’re using immune-suppressing medicines, even now there are still risks for a new infection or new problem that could develop that could become serious and even life-taking. Usually, if somebody is very well and has had few active complications at the two-year mark you can be confident that they’ll be OK.”

For now, that’s all the comfort available for Kim Freeman.

Combined immunodeficiency

Sydnee Freeman suffers from severe combined immunodeficiency. Her variation, a deficiency of adenosine deaminase, is the result of a genetic mutation. One of every 50,000 to 70,000 children born in the U.S. has SCID, with about 15 percent of them ADA deficient.

Because of a severely compromised immune system, much of Sydnee’s youth has been plagued by illness.

Government aid and a benefit account at CEFCU locations help cover expenses. An upcoming move to another house has Kim Freeman, a divorced mother of three, in search of essentials such as a used refrigerator and stove.

But Sydnee’s May 24 transplant provides hope.

Second time around

It actually is the second time new blood cells have been introduced into Sydnee via IV. A 1999 transplant, conducted at Duke University Medical Center in Durham, N.C., and using her mother’s donated cells, was unsuccessful.

The second transplant had two key differences: 10 days of chemotherapy before the transplant; and an anonymous donor who had nine of 10 matching points, called alleals.

Duerst says Sydnee’s second transplant involved a new approach using lower doses of chemotherapy and the use of immune-suppressing medicines to prevent graft vs. host disease. In graft vs. host, the new immune system fails to recognize the body and attacks it.

Testing done 100 days after the transplant appears to indicate that, as planned, the donor’s blood and immune systems have assumed control of Sydnee’s body.

“At this point, she has very good signs of takeover from the new cells, that they’re in there and working and starting to do things,” Duerst says. “The catch is, we have to give her immune suppression so they aren’t too aggressive inside her body and react against her.

“Around the three-month mark, which is where we’re at, we gradually reduce immune-suppressing medicines, and once they’re totally off it still takes another three to six months to have some sense that things are going to work OK.”

The Freemans were allowed to leave their temporary residence in Chicago ahead of schedule. They frequently travel back for evaluation and treatment.

“I think I’ll always be worried,” Kim says. “It was a relief to leave Chicago, but I was scared. I told them, ‘I almost feel like I’m taking a new baby home from the hospital.’ There were all these restrictions.”

Sydnee still takes several pills every day. She likely won’t be allowed to visit public areas such as stores and restaurants until at least January. She usually wears a mask outside the house.

Sydnee also is not allowed to eat vegetables and fruits without peels. A ban on takeout food from restaurants was recently relaxed, and she enjoyed her first fountain soda in several months.

While doctors point to the two-year mark as a key moment, Sydnee looks ahead to the one-year anniversary of her transplant next May.

At that point, she will be allowed to write her donor.

All she knows is that he is a 24-year-old male. If the donor responds, they can meet.

Although she is shy because of a lifetime filled with long stretches of isolation, the thought of meeting her bone marrow donor brings a smile.

“She keeps asking me, ‘When can we meet him?’ ” Kim says.

Just routine

Despite worrying about the long-term picture, Kim draws strength from her daughter.

“She’s been through this for eight years, and she did absolutely no complaining through this whole thing,” Kim says. “For an 8-year-old to go through what she went through, she made every day seem like it was routine.”

Rather than attending school, Sydnee has been tutored for an hour each day after students have left LaSalle Elementary School in Creve Coeur.

Sydnee, who has learning disabilities, does homework to try to keep up with the rest of her second-grade class.

“Right now I wear a mask, and I’m not afraid because no one’s in the class,” Sydnee says.

Recently, she began adding a one-hour session in a small class with special-education teacher Carol Scislowicz. She will wear a mask, use hand sanitizer and not share writing utensils in order to reduce the risk of acquiring an illness in class.

“There’s going to be a period of adjustment,” Scislowicz says. “She’s conscious of her mask and the bandana she wears because of her hair. We’re increasing her school schedule from one hour a day to two, and hopefully by January she’ll be ready for a full schedule.”

Highlighting her strengths

Scislowicz emphasizes Sydnee’s strength, art, to build confidence. But a recent art assignment involving what students want to be when they grow up demonstrated Sydnee’s health history.

“We were talking about goals for the future and she said, ‘What’s that?’ ” Scislowicz says. “With the health problems she’s had, I don’t know if she’d ever thought about that before. When she came back, she said maybe she’d want to be a doctor. That’s an adult model she sees a lot. Maybe talking about goals will give her hope for the future.”

linkback url: http://www.pjstar.com/stories/090907/HEA_BE7V3CR7.022.php

Advertisements

Comments are closed.

%d bloggers like this: