Lilly’s rebellion

Ten-year-old girl aims to conquer aplastic anemia with a life-changing bone marrow transplant.

Lilly Vanden Bosch really, really hates to lose.

Whether it’s a card game, a relay race or, right now, a battle with severe aplastic anemia, 10-year-old Lilly is pretty darned determined to finish on top.

To prove her point, she explained that she beat even her own time in a relay race at school last month.

“And that was when my blood counts were pretty low,” she added with a grin.

Lilly’s battle with aplastic anemia began about two years ago when her family noticed abnormal bruising on her legs. Then she had a nose bleed that lasted for most of the day.

There was an initial suspicion of leukemia, then another blood disorder known as Evan’s syndrome, before doctors were able to definitively diagnose her with aplastic anemia, an autoimmune disease that affects only one or two people per million.

While certain viruses or exposure to rare chemicals or heavy metals may trigger the condition, in about half the cases, including Lilly’s, the cause is of unknown origin.

Because of aplastic anemia, Lilly’s marrow is producing virtually no new red, white or platelet cells to nourish her organs, clot her blood or fight infection, said Ulrich Duffner, MD, director of clinical services for the Pediatric Blood and Bone Marrow Transplant Program at Spectrum Health Helen DeVos Children’s Hospital. Her immune system is attacking the stem cells in her bone marrow, which is where new blood cells are produced.

Or, in Lilly’s words, “My bone marrow doesn’t produce blood anymore.”

As a result, she has been totally dependent on weekly donated infusions of blood products in order to survive. The infusions will continue throughout the upcoming transplant process.

Prepping for a transplant

On Saturday, Lilly is scheduled for admission to Helen DeVos Children’s Hospital, the place she’s likely to call home for at least the next month as she prepares for a bone marrow transplant.

That means several rounds of chemotherapy and radiation to wipe out her immune system and reduce the chances her body will reject new and healthy bone marrow.

The transplant is scheduled to occur on Nov. 27.

In anticipation of a long hospital stay, Lilly’s parents, Tom and Meg Vanden Bosch of Dorr, Michigan, had an early birthday party for their daughter and an early Thanksgiving celebration with extended family. Her tiny elementary school, St. Stanislaus, also surprised her with a party and well wishes for her extended time away from school.

The transplant, which will simply be another intravenous drip in a long series of IV drips, will be like another birthday party, only better, Lilly said.

Ultimately, the treatment will “completely eliminate Lilly’s own immune system and provide her with a new immune system,” said Aly Abdel-Mageed, MD, section chief for the pediatric blood and bone marrow transplant program.

In fact, the transplant will change her blood type from O-  to A+ and the DNA in her blood will be different than the DNA in her vital organs.

For at least six months, medications will keep Lilly’s new immune system in a weakened state “because we don’t want it to attack the body. We need for the body and the immune system to learn to work together,” Dr. Mageed added.

That means the risk of infection will be extraordinarily high so Lilly—and her mom—will be relatively isolated from friends. She won’t be able to attend school or eat certain foods.

A need for donors

Ten years ago, Lilly’s chances of beating aplastic anemia were about 50 percent, Dr. Mageed said. Today, the bone marrow transplant has an 80 to 90 percent chance of wiping out the disease, in great part because scientific advances allow for more precise matching from bone marrow donors.

Lilly’s new bone marrow is coming all the way from Europe. While strict rules prohibit contact with the donor for at least one year, Lilly would like to meet her one day so she can say “thanks.”

There are 10 specific markers used to determine compatibility and Lilly’s donor matches on all 10, Dr. Mageed said. None of Lilly’s immediate family members were suitable matches, but from among the approximately 23 million people on bone marrow registries throughout the world, a near-perfect match was located for Lilly.

Lilly’s plight has increased her family’s awareness of the need for bone marrow donors. They feel lucky for Lilly but are quick to point out that matches for non-Caucasian patients are much less common. So her family and friends are encouraging others to check out the online registry, Be the Match.

Tom’s employer is organizing a drive to get more people to sign up as potential donors, spreading the word that participating requires only a quick swab of the inside of your cheek.

“A well-matched donor decreases the risk for serious transplant complications significantly,” Dr. Duffner said. “Every effort to grow the worldwide pool of potential donors increases the chance of finding a well-matched donor for all patients.”

Lilly’s experiences over the last two years have convinced her that she’d make a good hematologist some day. “That’s a blood doctor,” she said. “There were only two kids in my class who knew their blood type. I was one of them.”

That news warms the hearts of her doctors.

“Lilly is a very bright girl,” Dr. Mageed said. “She asks questions. We give her honest answers.”

You can follow Lilly’s journey on Facebook: Lilly vs. Aplastic Anemia. The pediatric blood and bone marrow transplant program is part of our nationally-recognized hematology-oncology program and accredited by the Foundation for the Accreditation of Cellular Therapy, which means we meet rigorous quality standards for patient care and cell therapy treatments. Be the Match by registering on Lilly’s special page.

 

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Comments (9)

  • Lily and Family, we will be praying for you all during the transplant time. Our own daughter Bree had a bone marrow transplant at Helen DeVos. Dr. Duffner and Dr. Mageed are good hands to be in. God Bless

  • Thanks for posting this information about Lilly’s aplastic-anemia, I find it very interesting and informative. I have been Lilly’s child care-giver since she was about 3 mos old. I love this little lady as if she was my real grand child.

  • Meg –

    I missed my last appointment and didn’t get to see you, but I think of you often and wonder about Lilly. I so appreciate this update and send my thoughts to you all. I’m around there often and hope to run into you! I hope all goes smoothly!

  • We will be praying for Lilly and her family. My granddaughter who is 8 yr’s old was diagnosed with Neuroblastoma this past september and spend’s alot of her day’s at the Helen DeVos hospital having chemo.They are the best and have the best Doctor’s. Amazing how strong and brave Children can be. Lily and my Emma are in good hand’s. Maybe by chance they will meet if they are on the same floor. Emma will be admitted for round 3 of chemo Nov 13th. for 6 day’s. Emma has had good result’s and we pray they continue as We will add Lily to our chain of prayer to have the same result’s. God Bless Lilly and the family.

  • Hi Lilly, I am a nurse here in Grand Rapids. My son Ian is an ER ICU doctor in San Diego. 20 years ago he had A plastic anemia and a bone transplant like you are going to have. He went through med school and he married two years ago and now has a baby boy. Attitude makes a big difference. Stay positive and we know it will be difficult but you can do it with God’s help.

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