Eva is tough as nails, very stubborn and determined, but incredibly thoughtful and kind. She loves people fiercely, and always lends a helping hand. Her hugs are the absolute best, and her giggles can improve anyone’s bad mood. Through it all, she’s been so brave and positive, and we are constantly amazed.
Eva was diagnosed In April of 2020, right at the beginning of the pandemic lockdowns. We feel so lucky to live within an hour of Boston Children’s Hospital and Dada-Farber, where Eva is treated, and we were able to begin treatment right away.
After a week of pretty high fevers and a wide range of symptoms, Eva had been seen by every NP in our pediatrician’s office. At nearly 2.5 years old and with a twin brother, bruises are common in our house, so we didn’t notice that hers were more pronounced, or quicker to form. As the days went on and her color got worse, we kept bringing her back in to be seen. Each time we were assured that it was probably just a virus, she was COVID tested several times, and ultimately it was the development of petechiae that led to a complete blood work-up at our local Emergency Room. After a few hours there, we were rushed by ambulance to Boston Children’s; the ER doc didn’t want to say anything without confirmation from Boston, but he knew then it was leukemia.
Well, being a cancer family during a pandemic has made things both easier and harder. Easier because everyone else in the world was taking the same precautions as we were: masking, hand-washing, social distancing, and staying home. Harder because everyone around us became a possible vector for not only normal illnesses but also COVID. Our circle shrunk down to just a handful of trusted people, both Eva and her brother were pulled from daycare immediately, and we went into illness-prevention mode as a family unit.
In addition to worrying about her getting sick, we also had to watch as the induction phase made her all but unable to walk. For almost a month she had to be carried everywhere, as we worked on strengthening her leg and core muscles that had withered away during a month of intense in-patient treatment. She has learned to run, walk, hop, and dance all over again, but she still tires easily and often struggles to keep up with other kids her age (including her twin brother).
Eva was switched to the high-risk arm of our protocol after the first month of treatment because, despite being in remission, there were minuscule amounts of leukemia cells still found during a standard bone marrow transplant. These residual cells meant that she would not be able to avoid some of the more harsh chemotherapies, as we had hoped. Eva has had hundreds of doses of chemo administered by mouth, into her port (she refers to her port access as her “push” since the butterfly needle is pushed into the port in her chest), and into her spinal fluid to prevent leukemia cells from hiding there.
Eva’s Dad has become a stay-at-home parent to manage her treatment and to care for Eva and her brother (since we don’t feel safe sending them into a group environment), while her Mom goes to work each day. Our lives are completely different than they were pre-diagnosis, although much of that has as much to do with being a cancer family during a raging pandemic as it does with leukemia. We are now active in supporting other families in our area with similar diagnoses, and host blood drives for Boston Children’s Hospital as a way of paying it forward: without those blood products Eva would not be here today, and we will continue to do everything we can to make sure there’s stock on the shelves for other kids.
No cancer treatment road is easy, and she has had to endure so much, but we are thankful every day for how her treatment has progressed thus far and we would love the chance to document this moment in time so we can be sure she sees it reflected in our home as she grows. She’s so young, and while we look forward to a day when cancer isn’t at the forefront of our lives, we also don’t want to forget what we’ve done together.
Since Eva’s session, she has relapsed for a second time, this time in her CNS. After what we thought was a fully successful bone marrow transplant from her twin brother, we are back to battle the beast for a third time, this time with CAR-T as our expected treatment path. The photos from TGHP simply remind us of her strength and vitality and capture our family and support system without whom this road would be even more challenging.
Hope Session by Charlie Little Photography | Instagram
Amazing location: Tommy’s Place