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.
Chana was diagnosed with ALL in December of 2022. Before her diagnosis, she stopped crawling, and walking and kept crying each time from pain.
She has had many spinal taps under full anesthesia, 2 months of continuous 24/7 chemotherapy IV infusion, frequent chemotherapy, and blood work.
Before her diagnosis, we would travel twice a year to take our kids to the ocean. Since her diagnosis, we have been home and always within proximity to the hospital in case of emergency (which has occurred many times). We finally got clearance to travel with Chana. This is the first time we are leaving our home since our daughter’s diagnosis. We would love beach photos to celebrate this occasion!
Tenzin was diagnosed with ALL just after he turned 8 years old. Tenzin presented with frequent bloody noses, lethargy, vomiting, swollen lymph nodes, and anxiety.
The symptoms all came at different times and by the time he was diagnosed, it made sense. He was unable to hold down water the day he was diagnosed so I took him to the ER. He had been to the pediatrician and ER previously and was diagnosed with an ear infection, virus, and then para influenza 3 before diagnosis of leukemia.
Tenzin was admitted upon diagnosis to the PICU and then oncology unit. He has been admitted for lengthy stays 7 times. I have been unable to work at this time as he is not able to attend school full-time and requires other therapies.
As a single mom of two boys, we struggle to balance treatment, finances, and the emotional challenges of a diagnosis. Tenzin lost so much of his childhood and control at diagnosis. He deserves to be recognized for everything he has been through.
Anthony was diagnosed with Acute Lymphoblastic Leukemia in January of 2023 at 3 years old. Before him being diagnosed, he was in a lot of random pain. Every little touch on his body seemed to hurt him. He started walking with a limp and was lethargic and just overall not himself. He was in physical therapy for an ankle injury. We had already been to his pediatrician where they did x-rays of his both legs from his femur down to his ankle to check for any fractures. Everything was normal. His therapist recommended we go back to the doctor to get some blood work done. She was worried he might have some bone deficiencies or rheumatoid arthritis.
We went back to his pediatrician who sent us to get lab work done. Never in a million years did we think this would be the outcome. I got the call from his pediatrician saying that we needed to pack a bag and go to the ER and talk to a hematologist to run further tests. She was so vague. We had no idea what was going on. We went and ran more tests and one of the ER doctors finally told us what was going on. He has Leukemia.
We were admitted and were in the hospital for 2 months. He had a port surgically placed in him. He started his treatment journey with IV chemo, spinal chemo, and steroids. Our stay was extended because he developed severe stomach issues. We had many consults from infectious diseases, pediatric surgery, and GI doctors who all ran many tests. The pain was so bad that he was on a morphine drip. They never found anything wrong and concluded that the treatment was just upsetting his GI and causing slow motility. After 2 long months, we finally got to go home.
Since then, he’s had many clinic visits, ER visits, and admission stays. He’s endured many IV and spinal treatments, some allergic reactions, and illnesses. We are now in the maintenance phase where we don’t have to go to the clinic as often and mostly do oral treatment at home. There are still ups and downs but overall, Anthony is doing well.
This has been very hard on our family. With every admission stay, having to separate from our other kids to be there with Anthony. Every time he catches a fever, having to leave in the middle of the night and head to the ER. Having complications with his treatment set us back. His diagnosis has forever changed our lives.
William was diagnosed with ALL on 9/23/2023. He had what we thought were constipation symptoms. As the days progressed, he lost his appetite, didn’t want to walk, and started throwing up.
William has already had one surgery, 3 rounds of infusion therapy, 3 rounds of chemotherapy, and is on daily steroids and symptom relief medications at home. It’s been hard juggling his care and maintaining some normalcy for our other children.
I was supposed to start a new job and William was going to go to an amazing daycare. All of that changed the day he was diagnosed. I’m now his primary caregiver, and my husband works his butt off to support our family. We try to keep life as normal as possible for our older children and it’s all very difficult.
Camilia’s a sweet and sassy girl. She has the most beautiful soul and personality. She’s so caring for everyone else regardless of how she’s feeling. She has a beautiful smile and the most caring heart. She is a girly girl. Loves pink, glitter, and attention. Loves baking, she has baked since she was 3 years old. She also loves makeup and getting her nails done.
Camila was diagnosed with cancer on 08/13/2022. Before her diagnosis, she didn’t want to eat and complained of headaches and dizziness. Also, she was getting bruises anywhere on her body.
This has made us stronger, we have learned to trust and leave everything to the one who died for us. We have come closer to each other and appreciate life a lot more.
Thank you to The Lumen Room for donating their studio space!
