Honored Kid

Henry Siwek

Henry Siwek Kid Photo

Location

Lincoln, CA, US

Diagnosis

Acute lymphoblastic leukemia (ALL)

Date of Diagnosis

February 2016

Status

Angel

Treated At

UC Davis Children's Hospital

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My Story

I got diagnosed with a rare form of B cell ALL at age 3 months. With the support of some amazing nurses and doctors I was able to achieve remission after my initial 35 days of treatment, but there was a long road ahead. A two year treatment plan composed of high dose IV chemotherapy, LP’s, bone marrow biopsies, and multiple lab studies to evaluate my blood counts, as well as regimen of steroids, oral chemotherapy and antibiotics at home.  Through my battle with this disease , I had many bouts of neutropenia and chemo treatment had to be held or postponed, infections, and complications that led to line infections and removal and replacement of three central lines.  An unfortunate complication occurred around 18 months of age , which was caused by a neurological condition with an unknown cause or etiology but would further progress to a more severe debilitating form as my treatment continued.  I had fought a long and hard battle with leukemia and completed treatment in February of 2018. I was still getting outpatient physical and speech therapy but was still having admissions for acute fevers and infections. In May of 2018 , I got ear tubes placed because of the frequent ear infections that I was having, almost every two weeks. But a major event occurred in mid June after I was drowsy and un-arousable at home, a slew of tests done in the ER along with EEG’s, MRI and LP, showing severe brain atrophy, lesions on the brain and a predisposition for epilepsy.  This outcome had left me with no chance of a cure as this was irreversible brain damage and hospice care was initiated. I was able to spend the next few months at home with my family. I even got my first set of hearing aides in September to help with the hearing loss stemming from the multiple infections, chemo and blood transfusions. Sadly, my neurological status worsened and I had suffered respiratory failure five days prior to my third birthday.  Thank you for supporting me and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation. 

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