Did you know that every day in the United States 43 children are diagnosed with a form of pediatric cancer? Here is the story of how nearly 2 years ago our daughter began her battle with cancer.
On April 1, 2021, Haven James (age 4 1/2 at the time) and her mom, dad, and two sisters were in Iowa for Easter Weekend to spend time with her family that lives in the Des Moines area. That evening, Haven spiked a fever and also started to develop a high heart rate, and out of an abundance of caution, her mom Laura, decided to take her to the local pediatric emergency room to get checked out. The ER staff ordered some routine labs to check for signs of an infection, and within an hour the head physician of the ER came in with alarming news - Haven’s hemoglobin was critically low (4.2), and her other lab values were also dangerously out of range. That doctor dropped another bombshell on Laura - based on Haven’s extremely irregular lab results, she was concerned that Haven may have cancer. At that point, Laura was told it was a 50/50 chance that it was cancer, but they would need to do more tests to confirm. Due to COVID restrictions, Laura and Haven were alone in the ER, and Laura had to call her husband/Haven’s dad, Tim, and break the awful news to him.
Haven was immediately admitted to the pediatric oncology unit at Blank Children’s Hospital and began blood transfusions while awaiting further test results. By 11:30 am on April 2 (Good Friday that year), the final lab results had all came in and Haven was officially diagnosed with B-Cell Acute Lymphoblastic Leukemia (ALL). The doctors all told Laura and Tim that while this was a terrifying diagnosis, that Haven was “lucky”, because this was the most curable and treatable childhood cancer, and if your kid is going to her cancer, this was the one you would want them to get.
The first step in Haven’s journey was getting her back to the Chicago area to start treatment. Since she was so sick, the only option was a medical flight. The evening of Good Friday, Haven and Laura boarded the medical flight and made their way to Chicago, where Haven was admitted straight to the oncology unit at Lurie Children’s Hospital. On Monday, April 5, 2021, Haven had surgery to put in her port, had her first bone marrow biopsy, and began chemo. She spent the next 8 months going through 5 rounds of chemo, all consisting of a combination of IV chemo through her port, intrathecal chemo (injected directly into her spine), injections given to her at home, oral chemo, and high dose steroids.
In December 2021, she began maintenance chemo, which will last for a total of 18 months and will conclude in June 2023. Maintenance chemo includes daily oral chemo at home, check-ups and labs at Lurie every 4 weeks, and IV and intrathecal chemo every 12 weeks.
Since her original diagnosis, she has lost her hair, had 5 total hospitalizations (including spending 2 holidays in the hospital), made dozens of trips to the Lurie ER for fevers and other illnesses and complications, she has has received more than 10 transfusions of blood/platelets, and has had hundreds of needle sticks in her port, arms, and spine. Throughout all of this, she has been an absolute rockstar and she rarely complains about anything that she has gone through!
Haven is so fortunate to be able to attend school and live a relatively normal life at this point in her treatment. She loves being in kindergarten at Eisenhower and just adores her teacher (Mrs. Natt) and all of her classmates! She has two big sisters that are also at Ike with her - Avery (3rd grade) and Dylan (2nd grade). Eisenhower faculty and families have been such a huge support system for our family since the very beginning, and we are so blessed to be part of this amazing school community!
Thank you to everyone who is working hard to raise money - and shave heads - for St. Baldrick’s to help raise money to support other kids who are battling cancer like Haven!
Thank you for supporting Haven 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, you're supporting research to give all kids with cancer a better chance for a cure.