4 year-old Baily Bennett battles rare form of non-Hodgkin lymphoma

 

Baily Bennett, a 4 year-old boy from Tacoma, Washington, is battling advanced stage anaplastic large cell lymphoma, a rare and aggressive form of non-Hodgkin lymphoma that accounts for only about 3% of all lymphomas in adults and 10% of all lymphomas in children.

The story is every parent's nightmare. It began is April of this year when Baily's mother, Heather, took him to the pediatrician because she thought he had a cold. Just a few hours later, they were sent to the emergency room to investigate a large mass  that was taking over his heart and left lung. After tests and an overnight stay in the PICU of Mary Bridge Children's Hospital, the Bennett's learned that the mass was a tumor. Through surgery, the cancer was diagnosed as advanced stage anaplastic large cell lymphoma, and, at just 3 year of age, Baily was started on an intensive chemotherapy regimen.

Though the tumor did initially shrink in response to the regimen, it enlarged again. Now Baily is enduring an even more grueling chemo regimen and is preparing for an allogeneic bone marrow transplant, which he will receive at Seattle Cancer Care Alliance. Since Baily's siblings are not matches, he will need to receive marrow from a matched unrelated donor from the Be The Match National Marrow Registry.

Heather Bennett, Baily's mother, shared with the Blood Cancers Examiner some of the challenges her four year-old son faces, as he endures all of the treatment.

One of the most difficult things to do was to take Baily out of preschool. He is with Mom and Dad all of the time now, but he says that there is no place he would rather be. He realizes there are a lot of things that he cannot do any more that he loves; zoos, petting zoos, church group, preschool, train store, library, even riding his bike can be hard for him because of how weak he is. He tells me that  "it's okay, mom, I know I can’t do that because I’m sick.” and it breaks my heart. This is his “normal” life now and he has accepted it.

Heather wants to advise parents of small children to be alert to signs of cancer, and lymphoma in particular:

Don't dismiss enlarged lymph nodes in  your child's neck. Baily began carrying himself differently a while before he was diagnosed. Much of what I read online was dismissive of swollen lymph nodes in children. It never occurred to me that  he might have cancer. If you notice anything different at all, it is best to take your child in to see the doctor as soon as possible.

As the Bennett family prepares to relocate to Seattle for months in order for Baily to receive his life-saving transplant,  Heather also emphasized how she is trying to keep things as normal as possible for her two other children, her 8 year-old daughter and 2 year-old son. "We are strongest when we are together," she says.

Having positive attitudes and lists posted on the fridge of adventures to take the kids on will keep us going on the right path. Making sure that they know how loved they are and how important each of them are will keep us strong.

What does Baily say about all of this to his family?

I  will never leave you. I will get better!

To help the Bennett Family: The Baily Fund was founded to help cover costs associated with Baily's lymphoma treatment and bone marrow transplant. All donations are anonymous. 

For more info: Baily Bennett's CaringBridge site, Childhood Non-Hodgkin Lymphoma, Join the Be The Match National Marrow Registry