The doctor came in and said “we ran the results twice and something is off. You need to go to the VCU Emergency Room tonight, you don’t need an ambulance but you need to go soon.” Leaving the urgent care facility my head was spinning. We made a couple of phone calls, kissed our daughter, Piper, goodbye, and headed straight to VCU.
The urgent care doctor gave us no indication about why we needed to go to VCU so promptly. She also didn’t tell us that she had made a call to the oncologist on call to be expecting us. We waited for hours in our emergency room bay. So much blood was drawn. Holden had bandages and wraps all over - he had an IV that they covered with a small sock to stop him from messing with it. The Emergency Room staff were all very friendly and checked on us frequently. We watched TV and stayed positive for most of the visit - until a doctor came in, closed the curtain behind him, and sat down.
At this point, we knew something was very wrong. I remember being frozen as I heard him say “blood cancer.” My eyes welled with tears and I stared blankly ahead. We were told we would be admitted and we would know more as further testing came in. We were later rolled upstairs, greeted by nurses wearing full face shields and smocks (this was pre-covid times so the sight was a true shock and terrifying). The memories that are most vivid that night are being rolled in and seeing the “crib” that looked like a tiny jail cell with metal bars and holding my baby down for what seemed like hours so that vial after vial of blood could be drawn.
The upcoming days were a blur of tears, consultations, and procedures. After the initial shock wore off we began to befriend all of the nurses and staff on the 7th floor. As the days in the hospital went on our daughter would visit and we were all together in our room trying to keep things as normal as possible. Piper introduced Holden to everyone as Baby Hoho and the name stuck. Over the next 6 months, Baby Hoho was welcomed to the 7th floor dozens of times and always had tons of visitors with smiling faces.
Through our time in treatment, we were introduced to a few different cancer organizations. We were connected with LeAnna with Our Amazing Fighters and she wanted to come and meet our sweet Baby Hoho. She came to visit on one long hospital stay and brought coffee and sweet surprises for Holden (and a couple for Piper, too!). LeAnna was always checking in on Baby Hoho and offered to help whenever she could. Holden had an emergency hospital stay in July 2019. Our family was supposed to be at the beach and we had to make some tough decisions about splitting our family up during this week. Holden was so sick with an infection in his hickman line (where he received all his chemo, blood transfusions, and other medicines). He would only sleep when held and Josh had to Holden him 24 hours a day. LeAnna was there to offer to stay with Holden so Josh could have a couple of hours to go home, eat, walk the dog, and shower. This respite time from the hospital was critical and we are forever thankful that she would offer to step up in this time of need.
Our sweet boy finished treatment in August 2019 and is a thriving four-year-old now. He loves cars, dinosaurs, gymnastics, and swimming. As we are nearly 3 years off treatment he now only visits the oncologist twice a year. As we transition into “normal life” and no longer feel like a “cancer family” as often we still feel supported and cheered for by LeAnna and Our Amazing Fighters. Holden sleeps with his blanket from LeAnna nightly and we often think of her extreme kindness during such a dark time in our lives.
On March 6th 2019 I decided to bring Holden to an urgent care facility after work to be assessed for the flu and strep throat. I explained his symptoms: low-grade fever on and off, runny nose, tired - all seemed pretty common for a virus in a 9-month-old baby. The doctors and nurses came in frequently to check on us and to update us as the results came back negative. On a whim, Josh thought to mention “Our family has a history of blood cancer.”
They asked for more details and we explained that Josh, Holden’s father, had Acute Myeloid Leukemia when he was 19 years old (13 years prior). The doctor decided to draw blood from Holden to be safe. While waiting for the results Holden developed petechiae all over his body (these are busted blood vessels that are prevalent when your platelets aren’t functioning properly or are low).