Brother's Donation Helps Alicia Garen Beat Illness
St. Ignace Girl, 6, Recovering From Transplant at Grand Rapids Hospital
By Ryan Schlehuber

Alicia Garen, 6, afflicted with myelodysplastic syndrome, a disease which deteriorates healthy cells and platelets in bone marrow, received a bone marrow transplant Saturday, January 13. Her older brother, Cole, was the donor; according to doctors, he was a perfect match. Alicia will be recovering at Helen DeVos Children's Hospital in Grand Rapids for the next six to eight weeks. (Photograph courtesy of Nicole Garen)

Six-year-old Alicia Garen can tell you about courage, pain, patience, and love. She can also tell you about white and red blood cells, platelets, and what it takes to overcome a life-threatening bone marrow disease called myelodysplastic syndrome, or MDS.

While her first grade classmates in St. Ignace learn about reading, numbers, and the earth's surface, Alicia, being treated at Helen DeVos Children's Hospital in Grand Rapids, is learning how many platelets a person should have, what chemotherapy is, how a bone marrow transplant works, and how she will feel during and after the procedure. She also knows she will not be able to enjoy certain foods and will have to endure isolation from friends for the next few months to allow her body to produce healthy blood cells on its own.

"She's pretty tough for a sixyear old," said her mother, Nicole Garen, who is staying with Alicia at the hospital's Renucci House, a recovery suite for bone marrow transplant patients, for the next six to eight weeks.

MDS is the name given to a group of closely related diseases that arise in the bone marrow and involve hematopoietic stem cells, the immature cells from which all blood cells develop. Myelo refers to bone marrow and dysplasia means abnormal.

Mrs. Garen said they are lucky to have discovered Alicia's case in time, as MDS is considered the last step before leukemia develops.

Alicia went through the whole summer and fall with just 5,000 platelets, while the average person should have between 150,000 to 400,000 platelets. Platelets are irregularly shaped, colorless bodies in blood that help form clots, stopping any bleeding.

In April, because Alicia had 34,000 platelets, she was not allowed to go to recess, or participate in her physical education class, or even run.

"The biggest threat was a head bleed, because there's no way to stop the bleeding," Mrs. Garen said.

Each year, between 15,000 and 20,000 new cases of MDS are diagnosed in the United States, according to the Memorial Sloan-Kettering Cancer Center. Alicia's illness is rare for children. Patients with MDS tend to be an average age of 70.

Hematopoietic stem cells are produced in the bone marrow and mature there into functioning blood cells. MDS arises when one of these stem cells undergoes a transformation from a normal cell into a malignant cell, one capable of uncontrolled proliferation. The malignant cell then begins producing clones of itself.

Alicia was diagnosed with MDS in April after her mother and father, Nicole and George Garen of St. Ignace, noticed the bruise she got from a water slide was not healing after more than a week. Doctors described her condition as aplastic anemia, which, soon after, was diagnosed as MDS.

Before she headed to Grand Rapids, Alicia explained to her 13 classmates her condition, what will happen to her during her bone marrow transplant procedure, and what will happen afterward, said Kari Visnaw, Alicia's first grade teacher.

"She shared with us, almost on a daily basis, what was going to happen to her," said Mrs. Visnaw. "Everyone was aware she was sick on the inside, even though she acted like and looked like the same person."

After going through doses of chemotherapy to destroy the abnormal stem cells and blood cells, Alicia received a bone marrow transplant Saturday, January 13. The bone marrow donor was her big brother, Cole, a third grade student.

Before searching for a bone marrow match for Alicia, doctors told the Garens that there is only a 20 percent chance that a sibling will be a match. Donors must meet six of 10 criteria to be eligible. Cole was a perfect 10-for-10, which meant the transplant procedure had a 95 percent chance of success.

"Cole is kind of a big hero at school now," said his proud mother.

For his efforts and sacrifice, Cole was given tickets to a Grand Rapids Griffins hockey game that night by the hospital.

Ten days after the transplant, Alicia has not experienced any complications.

"She's been doing good, other than being nauseous," said Mrs. Garen.

She explained that her daughter will now have her brother's blood type, changing from 0 positive to A positive, as her body will eventually produce more of the new type of blood.

"She kept teasing Cole that when she does something wrong she can blame her brother," laughed Mrs. Garen.

Alicia now faces the long road to full recovery. She will have daily blood draws and weekly red blood cell and platelets transfusions while in Grand Rapids.

While the transplant seems to be a success, Alicia is still susceptible to side effects, infection, and "graft vs host" disease, which means Alicia's body could reject Cole's cells, recognizing them as a foreign substance and trying to fight them. She will be taking a drug called cyclosporine, which helps prevent rejection, for the next six months.

"She has been told everything about her condition since day one," said Mrs. Garen. "She knows her marrow wasn't functioning and that she had drugs called chemo that will kill all of her bone marrow cells so that when she got Cole's cells, they would have a place to grow."

For the next year, Alicia will have to make adjustments to her life, since her body will still be vulnerable to infection. She will be required to wear a mask any time she leaves the house. Visitors will be kept to a minimum. She will be unable to go swimming, dine out, or play outside on the ground because of the bacteria she could encounter. She can go fishing, one of her favorite hobbies, however, she cannot bait the hook or touch the fish.

"When we get home, it will be boring for her that no one is going to be able to visit her for a while, and she's not going to be going anywhere too often," explained Mrs. Garen.

She will also continue with schooling at home, as she has since her last day in class December 22.

"She is an excellent student," said Mrs. Visnaw, who also reported that classmates named Alicia as their "bravest first grader."

Mrs. Garen believes her daughter will be able to live a normal life.

"She will always be followed for long-term complications from the chemo and transplants," she said. "She will have yearly check-ups for the rest of her life and there is a whole host of side effects that can happen years down the road. But barring any complications from here on out, she will fully recover and be 'cured' of the myelodysplastic syndrome."

While Alicia and her mother stay in Grand Rapids, Cole will go back to school and Mr. Garen will go back to work at Les Cheneaux Plumbing Systems.

The family's insurance is covering most of Alicia's medical cost, said Mrs. Garen. They are also receiving funding through Children's Special Health Services, which, said Mrs. Garen, "most people don't know about." She said families can qualify for it based on a child's disease, no matter the family's income base.

The experience that Alicia and her family has gone through, and seeing the many sick children in Alicia's hospital ward, has given Mrs. Garen an interest in raising awareness of aplastic anemia and MDS.

"There are so many different childhood diseases we never learn about until someone experiences it," she said. "It's sad to walk down the hallway and see all the sick kids. I'm glad Alicia is tough and is making it through this."

Mrs. Garen also appreciates the support Alicia and her family are receiving from the St. Ignace community.

"It's awesome to come from a small town like St. Ignace where everyone treats you like a member of a great big family," she said.

Fundraisers are being planned for the Garens to help the family with meals and help pay bills while Mrs. Garen, a daycare provider, and Alicia are in Grand Rapids.

Many community members, including her classmates, are visiting Alicia's online "care page," which is set up through Helen DeVos Hospital's Web site, where visitors can post messages and read updates on Alicia.

A bake sale fundraiser will be held for Alicia at Glen's Market in St. Ignace Saturday, February 3, starting at 9 a.m.

Alicia, who turns seven March 17, is already looking forward to her eighth birthday, which is when she will be able to do what other kids her age do - have fun.

"She's looking forward to riding her bike," said Mrs. Garen. "She also wants to go to Disney World for her eighth birthday."

To send Alicia cards, write to Alicia Garen 7264, c/o Helen DeVos Children's Hospital, 100 Michigan Street NE, Grand Rapids, MI 49503.