high-risk B-cell acute lymphoblastic leukemia (HR B-cell ALL)
On September 8, 2020, my youngest baby Paige was diagnosed with high-risk B-cell acute lymphoblastic leukemia (HR B-cell ALL) at Children's National Medical Center in Washington D.C. This diagnosis came after two weeks of visually noticing a change in Paige's behavior. By that point, she had been suffering from a high fever (102-104°) for two weeks after being misdiagnosed by Patient First Urgent Care. She had extreme fatigue, complaints of sore muscles, and literally not wanting to do anything. But this discovery happened by chance.
At the beginning of this two-week process, Paige had fallen in dance class and hit her mouth. Her lip swelled upon the initial trauma to her face, but it immediately went back down to normal size, and she didn't complain about the pain after that. I kept checking in her mouth just to make sure everything was okay and became startled after two days because the gums around her top four front teeth became very swollen. Initially, I wasn't sure if it was because she had fallen or because three of those teeth were loose. But that all changed three days later.
On the third day, Paige woke up with a big black spot on her gums right next to her front left tooth. She said it didn't hurt, so I left it alone for a day. The next day she woke up with a full-on abscess. This prompted the first ER visit.
After driving straight to the hospital in D.C. from our end-of-the-summer Delaware beach vacation, Paige was seen by an ER doctor and the on-call dentist. The dentist removed the tooth, cleaned out the abscess, and didn't think Paige needed an antibiotic even though she had a fever for over a week. The ER doctor said she did, so she was put on Augmentin for the weekend. We were told Paige's overall well-being should improve, and we were to continue alternating between Tylenol and Motrin for her fever. Her mouth improved, but unfortunately, her fever didn't. She became even more lethargic than she already was, wasn't eating much, and her fever shot to 104°. I called the ER every day to keep her file updated with her progression. After day three of calling, we went back to the ER.
The doctor from this ER visit wanted to do a full work-up on Paige. They did bloodwork and X-rays to rule any and everything out. After the first round of bloodwork, they gave her an IV because she was dehydrated and said they wanted to do more bloodwork. At this point, we were concerned but not too worried. We assumed she had an infection in her blood that would require her to be admitted for a few days for a more intense antibiotic, and then she would come home. That was not the case. After being in the ER with her dad for several hours (only one parent could go back due to COVID), around 9:15 p.m., the doctor came back to Paige's room and asked her dad to step into the hallway to discuss her results. He explained the difference between healthy white blood cells and the excess white blood cells in Paige's body. Normal is 15,000; Paige's was 232,000. This indicated cancer of the blood and leukemia, but further testing would determine which kind. He then explained Paige would undergo three surgeries within the next 24-48 hours ― getting a port placed in her chest to administer the first round of chemo, having a bone marrow aspiration, and having a spinal tap. She would become an inpatient for the next two to four weeks. My husband then shared this information with me, and the next chapter of Paige's leukemia journey began.
So far, Paige has been an inpatient nine times, received more than 19 lumbar punctures, been to the ER six times, received in-home IV chemo 12 times, and is still going through her rigorous treatment journey. She is a fighter, and we know she will make it out of this victorious and stronger than ever. Please continue to pray for her as she continues this uphill battle to recover from HR B-cell ALL.