Spotlight a Survivor: Langerhans Histiocytosis - Jacob and Lindsay's Story

Despite 14 hospital stays last year, three-year old Jacob is brimming with energy, mischief and charm.

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Jacob Blum

Surprise, Arizona
Langerhans Histiocytosis
Transplanted in 2022
Many thanks to Phoenix Children's Hospital and The American Society for Transplantation and Cellular Therapy for helping us share Jacob's story.
 
 

If asked to design an ideal life -- a life of maximum joy – few of us would imagine mothering, single-handedly, a blended family of nine children: 2 biological, 5 adopted and 2 foster children, many with serious medical issues. But for Lindsay Blum, the Arizona mother of three-year old Jacob Wyatt Blum, this life is her dream.

Lindsay is a registered nurse with a background in oncology medicine. “I usually have children… in need of significant care. I love being a nurse and couldn’t see myself helping others in any other way,” says Lindsay. A single mother since her divorce from her biological children’s father, Lindsay has adopted and fostered her large family on her own. She’s helped by her older children, especially daughter Paige, 20, who is studying to become a social worker and is already a certified rehabilitation provider.

When asked about her motivation for forming such an exceptional family, Lindsay responds with a laugh, “I always knew I wanted to help more children than I physically gave birth to. Honestly I never envisioned my family would have nine kids, but we’ve made it work.”

Over their years of fostering and adopting, Lindsay’s family has helped five children through transplant: one heart transplant, three liver transplants, and one BMT!

When Jacob -- the bone marrow transplant recipient –first arrived, at eleven months old, he was already in treatment for Multifocal Multisystem Langerhans-Cell Histiocytosis, which often progresses to leukemia. He was so fragile that, in early 2021, his medical team broached the possibility of hospice. Lindsay was radically opposed, “I was speechless when they said hospice. I said no, we are NOT there yet.”

Ultimately, Jacob’s care was transferred to Phoenix Children’s Hospital, where, in 2022, he received a curative bone marrow transplant. Because Jacob is of Native American heritage, they were initially concerned about finding an unrelated donor. “Many people in the Native American community don’t donate, because traditionally they don’t give away part of their body,” explains Lindsay.

Jacob’s first matching donor backed out, but a second donor was quickly found. “It wasn’t hard to find a second match, which shocked us and the team,” recalls Lindsay. “And it was a strong match, 9 out of 10!”

Lindsay found ways to honor Jacob’s Native American lineage during the transplant. “I’ve stayed closely connected with Jacob’s biological family, even following his adoption. Jacob’s grandmother, or ‘Gola,’ as Jacob calls her in their native language, was able to coordinate a medicine man to come bless the cells before Jacob was infused. He said prayers for Jacob’s healing and acceptance of the cells. It was a very touching moment.”

Despite 14 hospital stays during the past year, three-year old Jacob is brimming with energy, mischief and charm. “Jacob loves to feel the wind in his hair! Anything that gives him movement (like a swing, or the bouncy house) is fun for Jacob,” says Lindsay. “He loves when we go for car rides with the windows down. And he also loves playing on his learning tablet.” Paige is amazed at all Jacob has gleaned from the tablet’s educational videos. “He now teaches me things! He taught himself the alphabet in sign language, and then he taught me!"

Paige and Lindsay make managing complex medical needs look not only doable, but enjoyable. “My older children did all this with me, they wanted to be a part of this, this was a unanimous family decision,” explains Lindsay. “We love knowing that the children we have brought into our family aren’t sitting somewhere alone or unloved. They are here, getting love and attention and the joy of living somewhere safe.”

‘I have you ‘could easily be the motto of the beautiful Blum brood, which, in addition to Jacob, includes: Paige, 20; Daniel and Tyler, both 18; Marina, 14; Eamon, 9, (who had a successful liver transplant in 2019); Leo, 3, (Marina’s biological brother and Jacob’s partner in toddler crime); and two foster children, a two-year old girl, who received a liver transplant while under the family’s care, and a seven-month old infant girl, born prematurely, who is oxygen-dependent.

Life in this household is anything but simple, and yet the family operates with an undeniable joie de vivre. Lindsay says, “I give of myself to my kiddos and to the foster children I care for. That is my passion and where I find my joy.

 

Phoenix Children's Hospital, in collaboration with Mayo Clinic Arizona, is the only pediatric bone marrow transplant program accredited by the Foundation for the Accreditation of Cellular Therapy (FACT) in the Phoenix Valley. The program has maintained a 1+ rating through the CIBMTR for 5 years in a row and our survival rates are in the top 10% nationally. We offer novel therapies, participate in local and national clinical research, and have an experienced multidisciplinary team to care for patients and families throughout therapy and survivorship.

The American Society for Transplantation and Cellular Therapy (ASTCT), formerly known as the American Society for Blood and Marrow Transplantation, is a professional society of more than 2,200 healthcare professionals and scientists from over 45 countries who are dedicated to improving the application and success of blood and marrow transplantation and related cellular therapies. ASTCT strives to be the leading organization promoting research, education and clinical practice to deliver the best, comprehensive patient care.

 

 

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