Our Mayush was born in the spring, in late March, and brought light to each room she entered, touched every guest who passed by, and met everyone with a smile, laughter, kindness, and peacefulness. Maya was Ben’s young sister. Ben was born a year before Maya, who managed to catch up to any age gap in the verbal, social and motor skill aspect. They grew up as twins.
Maya was the best partner for everything, and her matureness surprised us all time and time again. Her creativity and imagination were endless.
Maya loved to sing, dance, jump, build, read books, play with dolls, knead dough, draw, cook, eat…
Maya never saw a doctor, and never got sick. Maya did not catch fevers, did not vomit, nor did she complain of pain.
At two years old and ten months, we detected a blue mark under her eye. The next day it disappeared, and back again. We noticed that she sleeps more, eats less, and that there is swelling in the neck under the left ear. We took Maya to a pediatrician who said it was nothing. Two days later, we went to see a specialist who said it was nothing as well. The next day we were still not quiet and went back to the doctor and asked for general checkups. Everything turned out fine and no abnormalities were detected. A few days later we turned to another specialist who agreed to receive us at 9PM, and we told him: "you’ll tell us that the ears are normal, and that there is nothing in the throat, that the blood tests are normal and maybe she's recovering from something viral. You’ll tell us she's not complaining, and does not look sick… But something is wrong. Something is going on in her body. “
The doctor examined Maya and said:
"I did not see any abnormal findings, but I am attentive to the parents and how they feel, and if you are not calm, go to the hospital outpatient, where you will be examined."
We were surprised, but immediately told ourselves that even if it was an allergy, lack of vitamins or mono disease, it was better to do the tests and understand what was going on.
At 7am the next day we showed up at the outpatient department. We were not accepted. They said we had no appointment and if it was urgent, we should go to the emergency room. We were not received there either. We then went back to the outpatient and insisted that someone see her.
It's hard to explain how, but in the few hours we were at the hospital Maya looked different, she seemed off, sleepy. They finally agreed to examine her, but it was too late in the evening to get her to ultrasound and CT, so they asked us to get admitted and do it in the morning.
The next day Maya went in for imaging. When we returned to the room, an oncologist was waiting for us:
'Hello, I'm a doctor in the oncology department. Your Maya has cancer, neuroblastoma. She is in stage 4, at high risk. It is a Metastatic disease, apparently spreading with bone marrow involvement. We'll put Maya in for a biopsy tomorrow, but we can 't wait for the results and she's going to start right away. The disease is very widespread, and Maya is in real danger of death at the moment. "
Stunned, shattered, tearful, devastated, and without a moment to grasp the horror, we moved on to the oncology floor. We started reading, asking, and trying to get to know all the new lingo we had never heard of;
Cojec protocol, port, line, sterilize, counts, platelets…
Maya within days became a resident of the oncology department. Every morning she waited for the playroom to open. Asked when she will go home and if Ben misses her. Making new friends and roommates, enjoying the moment, and always maintaining her radiant joy and smile.
We deepened our knowledge and realized that in Israel, there wasn’t all the equipment and all the treatment options that the world outside has to offer. After days and nights of research, we decided to move Maya’s treatment to MSK where we were under the impression that had the most experienced care and the biggest chances of saving Maya.
Within a few weeks we uprooted our lives and moved to New York to be near the hospital. There, for nearly a year Maya underwent surgery, chemotherapy treatments, radiation, biological antibody treatments and radioactive treatments.
In between and while undergoing treatments, Maya still enjoyed life in New York. The smile never left her face and every chance she got we visited the park, Starbucks, Central Park, Bryant Park, the Bronx Zoo and Coney Island Beach.
Maya was sedated dozens of times for imaging and different tests. Stabbed hundreds of times with injections and the line / port connection and went in and out of the hospital.
But Maya was happy. Always.
Suddenly, when she was feeling well, just before another chemo treatment, Maya's blood pressure was abnormal, and a red light turned on. We were immediately sent for a set of scans. A few hours later, in the evening, the doctors announced that there was an outbreak of the disease. And it is not clear to them how Maya kept on dancing, running, and jumping, because it seems that the bones in her body are in a very bad condition, and at this point nothing can be done.
"What do you mean nothing can be done ...? So, what ...? What? What should we do...? What will happen ...?” We were shocked. Such a statement could not be comprehended.
The doctor who treated Maya with the utmost dedication told us with great sorrow that Maya had two to three weeks to live. He promised he did everything he could and everything the medicine world had to offer. 'She's so good, and happy and full of joy I do not want to overload her with aggressive treatments that will not help her at this point, and will only weaken her body... Let her go well...’
Maya passed away two weeks later at the age of 3 and eight months, in her home in Israel, by her mother, in bed, clear and happy, sure she was only going into a short nap and will immediately wake up to play again.
Ways to volunteer:
Help us diagnose on time!
As a family of a patient, we would be happy if you could share with us your story about your child’s symptoms till diagnosis. This information will assist with raising awareness to neuroblastoma, and support early diagnosis, which can literally save kids’ lives.